Life Changing Cancer

A Celebration of Life

2007-07-23T11:23:00.001-04:00

Words and even pictures cannot capture the beauty and blessing of this last weekend. Friday night friends, family, loved ones, students, gathered to remember and celebrate Lynne. Rather than call it a wake( which Lynne would have hated) I chose to call it greet and eat. I greeted and received so many hugs from folks that my arms are still tired but my heart is still full.

Lynne's celebration service was indeed a celebration. Through singing, reading poems, sharing, laughing, and crying Lynne's life was remembered and celebrated, her death was also sadly mourned. Below are pictures from both events that is a small way capture the wonder of the time.

Our friend July Medeiros created an amazing visual tribute to Lynne. Photos were contributed by good friend Kim Ramsdale.
Even the corners held images of Lynne's life. Here she is with the kids.
Our dear friend Maria looks at the photos of the first 40 years of Lynne's life.

Lynne's mom Eunice read the 23 Psalm and many joined along with her.

Lucy and friends Emily and Eli sing along.
The choir lifted their voices to "You Raise Me up"!!!
Lucy opened the service with one of Lynne's favorite poems by e.e.cummings.
Rob and Jessie played along with a singing a long of some of Lynne's favorite gospel songs.

Even I got in the mix singing "Draw Me Close"

Nathaniel found a smile (so did Lucy in the background). Many of their friends came, ran around with them outside, ate cookies with them, and a few even brought them special stuffed animals to help their sad heart.

After about an hour of the service Nathaniel climbed on my lap and asked if it was going to be over soon!
Over 600 strong gathered over the two days to celebrate and remember. Thanks to all of them, thanks to all of you!!!

Now what???

Much love, Patty

The Boston Globe Article

2007-07-20T06:39:00.000-04:00

Hello Friends. So much to say, so little time. Life has been a blur these last few days grieving Lynne's death and preparing to celebrate her life today at the "greet and eat" and tomorrow and the Memorial Celebration. For those of you at a distance I will post pictures of the events. Until then... please check out the wonderful tribute in the Boston Globe today written byJ.M.Lawrence.

You can find it online at:

http://www.boston.com/news/globe/obituaries/articles/2007/07/20/lynne_dahlborg_professor_at_suffolk_university_at_60/?page=full

Your support and care has helped Lucy, Nathaniel and me through this transition and I trust will continue to do so.

Much love back at you!
Patty

You can help!

2007-07-17T19:57:00.000-04:00

As you might imagine it was not easy to share the news of Lynne's death with Lucy and Nathaniel. It is hard to believe that I just told them yesterday when they returned home from camp. It feels like weeks ago - my body exhausted yet my heart feels relief and a sort of peaceful sad feeling. Lynne went so peacefully, she was radiant, surrounded by such love and care.

About a month ago Lynne and I spoke about the possibility of her writing letters to the kids, sort of a final gift that they could keep and reread whenever they needed to. Her time went so quickly that she never got to write them. I know Lucy and Nathaniel have wonderful memories

of Lynne and these memories will sustain them... yet I had an idea (of course!) that though it won't replace letters from Lynne - it might help them remember her in the days, months and years to come.

You can help! I know all of you who write on the blog have been touched in many ways by Lynne, you may have stories or memories yourselves that sustain you. I am asking any of you who wish to write a letter to Lucy and Nathaniel about what Lynne meant to you- how you knew her, a story, a memory whatever feels right for you. I will put these letters in a book that in the future the kids can read them and be helped to remember not only how special Lynne was to them but how special Lynne was to so many of you. I so want the silly kids in the picture to find their smile again.

From the bottom of my heart... thanks.

Please post the letter on this blog, or email me at pakogut@aol.com .

May your hearts be open to respond. In many ways it is a final gift you can give to Lynne for all that she has given to you.

Love to all,

Patty

She rests in peace...

2007-07-16T09:59:00.001-04:00

June 18, 1947 - July 15, 2007

Our dear sweet Lynne left this life for her next adventure last night at about 7:45 PM. She was surrounded by love and song and prayers and tears. It was a peaceful passing. I will write more later for all of you but I just wanted to pass on this news and let you know than we will be celebrating her live with:

Visiting hours: Friday, July 20 from 5-8 PM

Memorial Celebration: Saturday, July 21 at 11:00 AM

North Congregational Church
United Church of Christ
38 Plymouth Street
Middleboro, MA 02346

So much gratitude to all of you for all your support, care and love these last months. In lieu of flowers, gifts can be made in Lynne's memory to the Memorial Fund of North Congregational Church.

Patty

A Sacred Sad Time (from Patty)

2007-07-13T17:00:00.000-04:00

I had another blog ready to post with funny stories about these photos but instead I must tell you that in the last 24 hours Lynne has declined. Her nurse Mary (who we love and who has been such a blessing) said that she has days, maybe just one or two. Saturday I had "the talk" with Lucy, today I had "the talk" with Nathaniel. He said, "Maybe Mamma Lynne can bring a cell phone and call us and tell us what heaven is like."

We are sitting vigil. I played her some of our favorite songs, "So Lucky" by Lucie Blue Trembley and "You take my breath away" by Tuck and Patti. I tried to sing along but I have this big knot in my throat.

Those of you who have been with us through this, sit and remember all the gifts that Lynne has given you, say a little prayer of thanks and then go and give your child or spouse or partner a hug, a nice long one when you really stop and hold on long enough so that you can feel their heart beat on your chest and you can feel their breath on your neck - feel their life force beating with yours and say thanks - never take it for granted because ..... well ... do I need to say more?

Hold Lynne and all of us in light and love as she transitions to the next place.

For all of you ... I say thanks!
Patty

Final Gifts (from Patty)

2007-07-09T18:58:00.000-04:00

My father once said, "Don't wait until I am dead to send me flowers!" His comment has always stayed with me and on occasion I have remembered and sent him flowers for a birthday or for father's day. They have always been appreciated. The sad thing about our culture is that often we wait until a person has died to lavish them (or their caskets) with flowers, to speak eloquently about them at the funeral or memorial service, to appreciate all the love and joy we received from them. Yet we miss (or don't take) the opportunities to appreciate our loved ones, to offer them our gifts before they die, while they are alive.

I have been thinking a bit about "Final Gifts" these days. For one, because a friend Jamie gave me a book by that title (Final Gifts - understanding the special awareness, needs, and communications of the dying by Maggie Callanan and Patricia Kelley) and it is giving me a lot to chew on and second, because of the way all of you in our home community and out there in blog land have been showering Lynne with gifts both tangible and intangible. Your words are like flowers and our rooms and hearts are filled overflowing. (I know that sounds kind of corny but that is the sort of mood I am in!)

I am still reeling (in a good way) from a gift we received this weekend. The church choir of North Congregational Church (the church where I am pastor) came by and sang to Lynne in our living room. Twenty voices strong sang "You raise me up" by Josh Groban. It was wonderful! For the seven years we have been in Middleboro Lynne and I have sang alto in the choir together. Lynne always said that when she sang with the choir, she would feel the presence of God, the spirit of worship. And so the choir sang and sang and sang. After the song was finished the choir said nervously that they were sorry about the mistakes and in a week or so they would really get it down. With tears in her eyes Lynne responded, "I didn't hear any mistakes ... I only heard the voices of angels." What a gift the choir gave to Lynne.

Some day at a memorial service all our eyes will be filled with tears as the choir sings "Your raise me up!" What a day it will be to celebrate a woman whose life has touched us so deeply. Yet until that day I want to offer Lynne all the gifts I can - companionship, a hand to hold on a stormy night, an ear to listen, a laugh, a reassurance that I will take good care of our kids and I will promise to make sure they floss! Like my dad said, "don't wait to offer your final gifts" - not just to Lynne but to to anyone who has touched you, helped mold you, nurtured you, loved you.

As I write Lynne is resting. The hospital bed will come tomorrow and we will set it up in a downstairs room. She is getting too weak to make the trek up and down the stairs. Home health aides will start coming tomorrow as well. Friends and folks from the church are scheduling time to be here to help and so I can get out and get the kids where they need to go. Her body is slowing down but her smile seems to be getting bigger and brighter. She is filled with grace and peace (most of the time). She will still laugh at my feeble attempts at humor and just for laughs, if you ask her who is the president she will say, "Hmmmm ... Geraldine Ferraro?"

I hope Lynne feels well enough to post soon, if not I will keep you up to date. Keep the prayers, good thoughts and kind words coming. There are no words that can express the depth of our appreciation for all that you have done. Love and bunches of flowers to you all!

Patty

A Post from Patty (still in Ptown)

2007-07-04T08:34:00.000-04:00

A couple of days ago I was talking to Lucy on the beach about Lynne and the ever changing state of her disease. Lucy replied, "Mom, the only constant thing is change." I told her she was right and asked where had she heard that? She said her Karate teacher Sensi Joe had taught them that. With the gentle Cape Cod breezes I offered up a prayer of thanksgiving for all the "teachers" in our "village" who are helping raise Lucy and Nathaniel.

I am glad for Lucy that she has some ability to roll with change because Lynne's state continues to change, on a daily and sometimes an hourly basis. Since her last post, we have remained in Ptown, we moved to a wonderful cottage looking out on the bay in North Truro. Since Lynne's challenge with pain at the end of last week we have been able to get it under some control. The on-call nurse Ginny (old friend, long story) came out to the Cape over the weekend to see Lynne, get her pain under control, ease our anxiety, etc. It was good and Lynne felt more relaxed and able to just enjoy being here. Mostly Lynne is resting/sleeping these last days. Some because of meds, some because of her liver starting to be unable to process the toxins in her system. Ginny said, "Lynne has really moved into the next phase of this process."

With all this we have had some wonderful moments. Lynne got me up in the middle of the night to watch passing storm outside the huge sliding doors. It was awesome to see the power of nature, the lightning, hear the thunder yet feel the safety of this little cottage, holding Lynne's hand. She wakes up to watch the moon, see the stars most every night. She says this place makes her feel happy, at peace. (Thank you sooooo much Brian and Marianne.)

Our friend "Aunt" Bev has been with us this week which makes it easier to keep the kids busy and enjoying this place. They have been to a ranger program at the National Seashore, have learned new painting technique from Donna (old friend, long story), picked up shells at the beach, ate ice cream at Ben and Jerry's and lots more stuff. With Lynne their hugs are more tender, their voices are more quiet, their hearts are more open. We are all aware that these moments together are precious.

Today, some of us will go see the Forth of July parade here in Ptown (we will be thinking of all our friends serving hot dogs and watching the Middleboro parade today as well!) Lynne is planning on conserving here energy so she can stay up till 9:00 PM to see the fireworks right outside our little cottage overlooking the bay.

Thanks for checking in. Lynne sends love and gentle hugs. I know she wishes she could write some (perhaps soon) but now she just needs to rest. Blessings to all.

Patty

A Night Out

2007-06-29T10:37:00.001-04:00

Finally, a day/night when I felt well enough to venture into the exciting world of Provincetown (Ptown) night life. Patty, and our friends Maria and Robbyn, went out to hear Kate Clinton do her comedy routine - "Climate Change" -last night - the early show, at 7:00 - at a club in Ptown. For those of you who don't know this town, I can tell you that there's lots of activity here on summer nights, from the endless parade of people watching people, to the many shows, street theater and concerts. One year, we were walking down Commercial Street at about 8:00 at night, and a car full of tourists rolled down their windows and asked, "Is there something special going on in town tonight? The street is really busy." We laughed and said "It's like this every night in the summer."

Kate lived in Massachusetts - as a teacher, in fact - before she took her humor on the road, so I've been to see many, many shows over the years. So, being able to see her this week felt like a special treat, and being able to laugh long and loud an extra wonderful part of the package. Her humor is mostly political, and I won't try to remember any of her great lines, but she did have a section about "Things I hope never to do again before I die." Examples I remember . . . sitting on the tarmac at Newark waiting for permission for the airplane to move, enduring a 21-month presidential campaign. Like me, she turns 60 this year, so we definitely share "generational humor," and perhaps she is thinking about her mortality too because of this milestone birthday.(She's a comedienne, and I don't mean to project my situation onto hers, it's just something I thought of . . . )

Patty, in her irrepressible fashion, managed to speak briefly to Kate before the show, and tell her my story, so after the show, I got a couple of hugs and kisses and Patty took this photo of us together. I love the photo, and it was great to get out of the house and see the activity of Commercial Street. I'm pleased to report that the new wheelchair travels much more smoothly than the first we had. (Patty is still smarting from the responses to my comments about her speedwork with the first wheelchair.)

Those of you who haven't seen me in a while will notice that I'm decidedly jaundiced, and that I've lost a lot of weight. Both of those are part of my new reality. The bilirubin that creates jaundice is draining through the stents, I think, because the jaundice doesn't seem to be worsening, but clearly some of the bile is not draining. I'm struggling with my digestive system, too, both with nausea and constipation. Yuck! For the last few days, the pain has been pretty manageable.

I'm glad we are here, and I've enjoyed the change of scenery, and Patty and the kids have enjoyed the beach and town.I have not made it out of the house before last night, and that has been disappointing, but it is what it is. My life is winding down.

Pain, pain go away...

2007-06-27T09:24:00.000-04:00

I have been suggesting that Lynne write a post to update all of our blog community of friends. She reports that she will blog soon! Besides being away in Ptown trying to relax and enjoy ourselves, Lynne has been dealing with trying to manage her increasing pain while not getting too "loopy" (her word) with all the pain medication. We are working on that.

It has been bittersweet being here. So many of the things we used to enjoy as a family, Lynne doesn't feel well enough to do, so she sends us all off to the beach, settles in for some quiet time - but the beach isn't quite the same with out her. Last night we went to one of our favorite restaurants in town, Napi's for Eli's birthday (11 yesterday). Lynne had planned to save her energy so she could go (she and Eli have a special connection) but as it was time to go, Lynne just couldn't. She needed to stay back and rest.

As I was there with the crew I was remembering all the meals Lynne and I shared at Napi's, with kids and without. It was sad to for all of us to not have her with us, but ever sadder to contemplate the possibility that we may never dine out at Napi's again....

So what to do... enjoy every moment. Enjoy the warm sun, enjoy what Lynne feels well enough to do, enjoy the memories we are making, feel all the feelings...

Thanks for checking in - keep the prayers and good thoughts coming.

Patty

Managing the Pain

2007-06-21T09:27:00.000-04:00

Thank you, thank you, thank you, to each and every one of you who responded to Patty's pleas for birthday wishes, and for sending your love and support. It was a special treat to hear from some of you that I hadn't heard from ever before. Your stories enrich me and give me a better sense of who "we" are. I do like the idea of this "blog family," and the fact that you all are touched by my story. And mostly, I love the sense of connection and community. Our widespread belief that we are completely separate from each other is so wrong, and can cause us so much pain. Recognizing our connection and our ability to truly support each other contradicts that sense of aloneness and can provide healing to body, mind, and spirit.

So, I'm now "officially" 60 years old; a new decade! Weird. There have been many times during the last year when I wasn't sure I would live to see this milestone. Now that I have, it feels a little anticlimactic, but turning 60 surely beats the alternative!

Last weekend was tough. I just had no energy, and there was so much going on that it was difficult to participate. In fact, much to my disappointment, I stayed home from the Saturday night birthday party. I hated to do it, but I just couldn't muster the energy, even to imagine being with all of these folks I love and who love me. Sunday I made it to the family party, but only after arriving early and taking a two-hour nap into the beginning of the party.

This week finds me feeling better, with more energy to carry some of my weight around the household, and better able to enjoy friends and family, books and movies. Mary, the hospice nurse, felt that a lot of what happened late last week and over the weekend was due to the pain, and so we've been strategizing about how to get "on top" of it. We've increased the dosage on my pain medication, which seems to be working, much to my relief. I can't believe what a difference it makes! The pain I feel is not a grab-my-side-and-moan kind of pain, but rather an ache in my abdomen that doesn't let up, and leaves me wanting to close my eyes, nap, and withdraw from life. Not sure I've ever felt anything like it before. The fatigue is definitely a big part of it.

We have begun to pack and otherwise prepare for our vacation in Ptown. We leave Saturday for two weeks of sunshine and salty air. I will be taking my laptop, so I'm not planning a blog vacation, although having access to the internet is always an open question.

That's my update for now. I am definitely feeling better, happily so. Love and thanks to each of you.

Blog Readers Unite!

2007-06-18T10:13:00.000-04:00

Shhhhh... today is Lynne's 60th birthday so I was thinking... wouldn't it be great if everyone who reads Lynne's blog today (or tomorrow) writes her a special birthday greeting, wish, blessing, hope, prayer, gratitude, or appreciation. Lynne is such a gift to us, on this the anniversary of her birth let's offer her our gifts. Let's go, what are you waiting for!!!

Her main squeeze,
Patty

Illness, Death and Community

2007-06-14T17:22:00.000-04:00

Carrie's mother died last Tuesday night of gallbladder cancer. Carrie has a blog about her life, her mother's illness, and caring for her father until his death earlier this year, and there is a link off to the right of this page. In caregiving her parents, Carrie has been loving, devoted, and attentive. I've never met Carrie, who lives in Canada, and I probably won't meet her, but I have developed a deep connection with her over the last six months, since we discovered each other through the internet.

First, a tribute to Carrie's mom, and to Carrie. I honor Carrie's hard work over these past months, and mourn with her the loss of her mother. I haven't been in her shoes over all of this time, but I am moved by her example of love. Carrie, please know that your grief is shared.

How did Carrie and I get connected? I have a "Google search" daily for any new entries on the web for gallbladder cancer, and so when Carrie began to blog about her mother's diagnosis, I was connected to the blog, and wrote a comment. I did so because one of my goals in establishing my blog was to reach out to others who could use the links to resources and information that I gained. Carrie wrote back, and we began to read and post on each other's blogs regularly, and then I created the link here to her blog. During the winter, I wrote about the loneliness of having a rare cancer. I think that loneliness can extend to caregivers and others who love someone with this rare disease, gallbladder cancer. Connecting with Carrie has been a piece of this; connected with someone deeply and personally affected by the cancer, and sharing our experiences using this inherently impersonal and mechanical format, the internet, to create a warm and personal connection.

Carrie, I salute you. Thank you for sharing your journey with me and with others who read your blog, and your comments on my blog.

A brief note about me. Patty's post from earlier today explained a lot. Mostly, things bubble along pretty much the same. I have had more pain in the last 10 days or so, but the hospice nurse, Mary, is doing a great job of helping medicate my pain. When I'm comfortable and reasonably pain free, I feel better to do other things. I have a big weekend coming up, with two parties to celebrate my 60th birthday (which is technically Monday). Again, many thanks to all of you who support me and those of love me with your words, deeds, prayers and ongoing love.

A new wheelchair

2007-06-14T11:28:00.000-04:00

Okay, so many of you got a good laugh at the thought of me pushing Lynne in her "transport chair" down the bumpy roads of Provincetown to the point of her saying "Patty (bump, bump, bump) could you slow down (bump, bump, bump) a bit ... I am starting to get (bump, bump, bump) nauseous." Well, to solve the "bumpyroad/fastpushing" problem we got a new wheelchair, one with a big slick back wheel for our next trip to Provincetown (this time with kids and a few friends.) We will be leaving next Saturday and hopefully will be able to stay two weeks. Mary, Lynne's hospice nurse, will be transferring her care to the local Ptown hospice so if Lynne needs anything while we are away she can get it.

Life these days has gotten pretty simple around here. Supporting Lynne as she attempts to find the right combination of drugs to keep her pain at bay and the right combination of food that she can keep down. We make outings to Rosie, Lynne's massage therapist for Reiki and reflexology. We are catching up on all the TV watching we missed out during our busy year. Lynne says that watching TV helps take her mind off her aches and pains.

Lucy and Nathaniel are out of school so that adds another challenge for the household, but so far ... so good.

In the midst of all this day to day stuff I am aware of my deep sadness at the thought of a future without Lynne, I am aware of the pain I feel for the kids who in time will lose a mom... I am keenly aware of the tenderness in the hearts of so many of you who have touched us with your kindness, support and care.

This is a holy, sacred time for all of us. Through the bumpy roads, tender hugs, pregnant pauses ... holy, it is holy. Thanks you for joining us on this journey.

Patty

Life Lessons

2007-06-09T11:57:00.000-04:00

Over the last year, I have been contemplating various life lessons that I found myself revisiting since the diagnosis of gallbladder cancer, and I had such a vivid example of one this morning, I just had to write about it. I believe that each of us comes into this life with lessons to learn, whether small or large, practical or profound. I suspect we may bring these lessons into our very existence as we begin our lives, but it's also possible to imagine them as challenges to our maturity that we bring to our adult selves as we begin to live independent lives. I also believe that life presents us with many opportunities to learn the lessons, so that many of us in mid-life sigh and think "this again!" as we see what challenges a new situation brings.

One of my life lessons has been to learn that I am truly lovable, and to contradict a deeply held belief that I am unlovable. Now, before those of you who know me pull out a list of things you think are lovable about me, know that these lessons, these challenges, just are, come from some deep place within us, and sometimes fly in the face of a more objective reality. I know that I have many lovable qualities, but, deep inside, there is a place of me that has simply felt unlovable. What's the best way to learn this lesson? To let others love me, and in the last year, I have experienced such an outpouring of love and support that moves me to tears and so contradicts this belief that I have about myself. Now, I don't know that I needed to get terminal cancer in order for this belief to be so thoroughly contradicted, but I do know that I've never before had such a consistent and persistent series of contradictions. I have felt the love of family, friends, colleagues, acquaintances, and even strangers. An example of this occurred about a month ago when my massage therapist called to say that she'd been talking about me with another client, who wanted to pay for 4 reflexology treatments for me. This client believes in the reflexology so deeply that she felt it would help me, and want to me it possible for me to get some treatments. At other times in my life, I would have refused, but instead I gratefully accepted. And the reflexology treatments have been wonderful.

Another life lesson has been to learn to ask for help, and not to assume that I can or should do everything myself. I came into adulthood strongly self-reliant, so much so that it was difficult for me to ask for help, even when I really needed to. This year, and particularly this past spring when I was still working, I understood that folks wanted to be helpful, and that I simply couldn't do everything I had done before. So, I asked colleagues to pick up a bowl of soup for my lunch, or to run to the drugstore to pick up another set of "sea-bands" because I'd left the house without mine. And any sense of false pride that had prevented my asking for help simply slipped away. We need each other, and relying on each other and asking for help is an important piece of that. I'm reminded of the poem that Jamie posted in the "comments" section last time about how we need to see our connections with each other, and to be willing to lean on and love each other.

Another example of folks reaching out to me to fill a need is that of my quilt tops. Several decades ago, I had pieced together quite a few quilt tops, but never had time to finish quilting them and putting the layers together to make them usable bed covers. A few weeks ago, some of the women in the church asked me if they could take the quilts and tie the tops so that my family would be able to use them. I said yes, and they delivered four beautifully tied quilts this week. We envision that Patty, Lucy and Nathaniel will each have a quilt for their very own, to use or to put away.

A third, but by no means last, life lesson that I have struggled with relates to both of those. In my self-reliance and perception as unlovable, it's hard to lean on others and see myself as genuinely part of a community. And yet, on an intellectual level, I have felt that the breakdown of community in American culture has been a profound loss, and I have mourned that loss. On an emotional level, I have also felt in myself a deep longing to be a part of a community, to be held by a circle of loving individuals who care about me and my well-being, and who also care about each other and the larger world we live in. I have consciously created community with other mothers in our "baby group," formed when we were expecting our first children, and still going strong. I have sought community by looking for others who have seen themselves on a spiritual path, as I have envisioned myself on. I now belong to a church community which existed before my arrival and will continue for many, many years past my death, and I value the relationships, care, and active concern we share for each other.

So what happened this morning that made me think about all of this? I woke just before 8:00 to the sound of voices in the garden to the side of our house. Unknown to me, Kim, a friend and parent to one of Lucy's classmates, had organized a "weeding party" on this Saturday morning, and had recruited kids and parents to come weed my garden. I did need to have weeding done, and I have mentioned it to folks who have asked what they could do. I'm not capable of doing it myself right now. Kim saw a need and met it. With almost a dozen pairs of hands, they cleared out a lot of weeds, and now the garden is even more lovely. And in a single, simple act, they contradicted my beliefs about myself and life and reinforced a much most positive vision of our interconnectedness. Yes, I am lovable, and my garden deserves TLC from strong backs and willing hearts, and yes, it's okay to ask for help with the unglamorous job of weeding the flower gardens. And yes, communities both temporary and permanent can be created when folks come together with a task, a desire to serve, an urge to reach beyond ourselves.

Garden Spring Flowers

2007-06-05T17:56:00.001-04:00

What gets me through my days? Lots of things, including the love and suppport of friends and family, my trust in the universe that everything will be okay as my life winds down, and the delight I feel in my garden.

My spring garden has lots of perennials and perennial bulbs, which means I have to do nothing except weed and perhaps water a little. And with little energy to do gardening this spring, I have appreciated the enthusiasm of my garden. I love watching new flowers open, and breathe in the fragrance of the flowers.

My poppy is a vibrant red that brightens up the whole garden.

The fish are active in the water garden, eating and laying eggs (I think). The greenery is water celery, whose roots survive even our hard New England winters, and which grow quickly once the weather warms.

This looks a little messy, as I favor the "cottage garden" look that lets things grow where they planted themselves when they seed themselves. I do plant the perennials and they don't move around the garden, but some will seed themselves from year to year. In the foreground are the peonies, with fat buds not quite open yet. Farther back is a bearded iris, and my red poppy.

This is my tree peony, with its enormous white blossom, It opened a little earlier than the others, and was stunningly beautiful. I planted the tree peony about six years ago, and it bloomed for the first time last year. I guess they are fairly exotic and can be hard to grow.

A white "traditional" (herbaceous) peony, incredibly fragrant.

My pink "traditional" peony, also very fragrant.

I also have bearded iris, and siberian iris blooming in the yard, profusely, and other flowers coming along. By the end of June, most of the show is over, except for any annuals that get planted, and any summer blooming bulbs I get into the ground (and I do have some ready for a friend to plant). My raspberries are full of flowers and newly developing fruit which we should be able to enjoy in a few weeks.

Life bubbles along in its new rhythm. I was pleased to hear the hospice nurse say on Monday that she thinks my energy and overall state have been pretty stable over the month she has been seeing me. I still wish I had more energy, but I'm grateful to make it through days when I can do some productive things and feel a part of my family. I send love and gratitude to each of you who reach out to me.

Mourning my Losses

2007-06-02T16:13:00.000-04:00

Patty and I just returned from a few days in P-town, the little trip without the kids that Patty mentioned in her post last week. We had a tiny little one bedroom unit on the harbor in Provincetown, able to watch the tides come in and the boats rock gently on their moorings. On Friday we had an early morning thunderstorm, and a one again in the late afternoon, which we could watch from the couch in our living room. It was sweet and relaxing and felt like being out in the weather without being out in the weather.

While we were there, we hung out in our room, reading, napping and relaxing. Patty did more, walking on the street and running errands for us. An expresso bar is right near the unit we were in, so Patty had lots of coffee to drink, and in the mornings she bought us cinnamon donuts at our favorite little shop on Commercial Street.

Because I'm experiencing shortness of breath, I knew I wouldn't be able to walk up and down Commercial St., one of our favorite things to do while there. We had arranged for hospice to get us a wheelchair, and Patty wheeled me down the street on Friday, so I could check out the shops and we could order a little lunch at our favorite burrito place. I couldn't eat much, but it was fun to share our lunch on the back deck, overlooking the harbor. I still don't have much appetite, or hunger, so when I eat, it tends to be just a small amount.

Riding in the wheelchair was okay, but I'd like to order some better shock absorbers! The street was not smooth, and so my ride was bumpy. Also, at first, Patty was pushing me so fast I began to feel motion sickness! Once she slowed down and avoided the potholes, the ride was much more pleasant!

Another day, we drove around P-town, checking things out, including two rental units we've arranged to spend a week in with the kids later this summer. They each look really special, and like they will be special places for our family for the week, but they raised my anxiety about my energy in 4-5 weeks and how much I'll be able to do or not do.

When we got home from our excursions, it was time for a nap. I've been sleeping 2-4 hours during the day, in addition to the 8 to 10 hours I sleep most nights.

I finished a few novels, read the newspaper each day, checked out some magazines, and generally spent a lot of time on the couch reading, and then watching TV at night.

I mention all of these details to say this is my life these days. Lots of naps, lots of reading, a little moving around, but not too fast or too much. Bringing my current state of low energy to a place I have loved and delighted in enjoying makes me aware of how much I've lost. I'm not the person I was; I don't have enough energy to fully enjoy being in a delightfully different location. I feel the cancer taking its toll on my body and my energy and delight in life. I am mourning all that I have lost.

What does it all Mean? . . . The Dream

2007-05-29T14:07:00.000-04:00

Since my diagnosis of gallbladder cancer a year ago, I have wondered at the meaning of my disease, of any disease for the person affected. Although I haven't written about meaning in the blog before, the question of meaning has been a persistent one. Last year, newly diagnosed, I wondered "Why me?" and "Why have I gotten a cancer with such a poor prognosis?" I have been acutely aware that with a diagnosis of a cancer that was more treatable, with better statistics for long term survival, I would have thrown myself into making sure that I was one of the survivors. But under all of this, the question about meaning.

One year ago today, the last night I was hospitalized after my surgery, I had a dream, a dream that offered hope and that framed a lot of this past year of struggle with my diagnosis and my disease. Here is my dream:

"In the dream, I woke to a pain in my side (like a pain I'd felt before since the surgery), but the pain was more focused and so both less and more intense. I was being encouraged not to move, but to lie still while I was ministered to. Then I was introduced into a 'chamber' (like a showroom with glass windows, or an old fashioned room with large stone chunks making up the walls, feeling almost medieval). In the room, four other beings lay as I did in a hospital bed that was more than a hospital bed. Each of us appeared radiant, transparent. To our right side, a small decorative decanter/glass beaker held this radiant spot of pain, some ethereal organ. Mine was damaged, so I was participating for healing, but the others had offered their small organs as sacrifice to others. They had known at the beginning that they were offering five days of their time to lie absolutely still, in this transcendent place. The dream did not offer a promise of healing of the body to me and to others who would come along in need of healing. Rather, the feeling of the dream is that we all want our suffering to be meaningful. We don't want to suffer without meaning.

In the dream, this time spent in holy, voluntary sacrifice offered peace to all and a promise that our suffering has meaning. Not what it means. But that it has meaning."

The dream brought me such peace. I have never doubted that it was divinely inspired, and that God was speaking to me of not being alone on my journey, but joined by other beings who sought to be of service. And, while I think a lot about the meaning of my suffering, I also remember that whether or not I know what it means, I don't doubt that it has meaning. I still wish that life had dealt me a different hand. I didn't choose to have cancer, never envisioned it in my life's path, and wish I were dealing with different life challenges at this point. But there it is. Given the hand dealt, my choice is how I deal with it, and how I make meaning out of this terminal diagnosis, this end of life coming before I'd ever envisioned it.

Our First Kiss

2007-05-26T07:29:00.000-04:00

I realize that this title might seem out of place in Lynne's blog but please bear with me. This week a friend encouraged Lynne and I to get away for a couple of days. I said to Lynne, "Your energy may never be better than it is right now. So let's go." With a few calls Lynne and I have reservations for a few days later in the week at a great place called Angel's Landing in Provincetown, MA.

As I have been anticipating getting time away with Lynne I have been flooded with all the memories we have made in Ptown. Well ... our first kiss was overlooking Herring Cove back some 18 years ago. Then there was meditating in the dunes (she was heavily into meditation at the time. Mostly I sat there with a peaceful look on my face thinking ... did I just get bit by another mosquito?) Before kids we used to camp in Ptown for weeks at a time, after kids we still camped in Ptown for weeks at a time. Independent of each other both kids wrote essays at school this year about there favorite place ... yet, they both were about Ptown. Nathaniel wrote: "My favorite place is Ptown. The ice cream is as tasty as cotton candy. The cotton candy is as tasty as ice cream." Lucy wrote:"I fell in love with Ptown and this is why, the ocean and gulls singing in harmony and the fragrant seawater. I saw many people so happy and worry free. I taste my Ben and Jerrys ice cream cone. I feel so safe like I am at home."

I have so many memories of sitting on the beach with Lynne - me ready to leave and Lynne wanting to stay and soak up every last ounce of the day. Lynne taught me that it really is okay to eat ice cream every night (in fact Lynne's rational for camping was we saved all that money so we can eat at great restauraunts and yes Ben and Jerry's) I remember biking for hours with Lynne in the dunes, feeling free and light and then sitting on the Post Office steps drinking ice coffee watching the world pass by. I remember romantic dinners with Lynne at the Mews, Lorraines, Cafe Edwidge and so many other places.

Many months ago when we were planning our summer vacations we decided (surprise) to go to Ptown. We have a place for the first two weeks in August. The same friend that suggested we get away now convinced us to rent a big Ptown house with her family in the last week in June. I hope and pray that the Lynne, the kids and I will be able to enjoy more time together there this summer. But around here we are living a day at a time and trying to capture precious moments where we can find them. So in few days Lynne and I will be heading out to Ptown. We will be leaving the bikes at home and we are bringing another set of wheels and a full supply of Oxycodon.

After Lynne's diagnosis last summer in Ptown we found a print of an ocean scene with the words: "The cure for anything is salt water; sweat, tears or the sea." It hangs in our bathroom. I look forward to going back to smell the sea, to let the tears flow, but mostly to make some more memories with Lynne to carry me through in the days ahead.

Feeling Sad

2007-05-24T17:26:00.000-04:00

Today's feeling is sadness, just general sadness about my current state and the things I've lost over this last year. Today is the one year anniversary of my diagnosis for gallbladder cancer, and I'm remembering my innocence going into the surgery that revealed the cancer. The doctors explained to me the many things that could be causing my bile duct to be blocked, but I never attached to cancer, or tumors, and I never saw that as my path. That left me feeling even more blindsided by the diagnosis, and by what the surgeon found when he opened me up.

I went into surgery around 2:00 p.m., and it was expected to last a few hours. When I woke up in the recovery room, the lights were dim,, it was mostly shut down, and I could see by the clock on the wall that it was almost 11:00. The recovery room nurse was cranky with me, and refused to answer my questions. I knew something had gone terribly wrong because the surgery lasted so long. All she was allowed to tell me was that the surgery was successful and they had relieved the blockage, and the surgeon would talk to me in the morning. Apparently everyone thought I'd be knocked out all night from the anesthesia. Instead, I spent the night awake a lot of the time, moving in and out of dozing, feeling incredibly anxious, and deducing that whatever they had discovered, it was really bad. I don't remember my exact thoughts, but I know that I couldn't wait to talk with Patty and find out what she knew. I knew that the doctor would have talked with her after the surgery, although it turned out they talked by phone because she had headed home when the surgery took so long. I had my cell phone in my room, but decided not to call her until morning.

At 6:00 a.m., I called and Nathaniel, the early bird in our house, answered. He got Patty on the phone, and I told her she HAD to tell me what the doctor had said. "He wants to talk with both of us in your room this morning," she said. "I've been awake all night speculating on the worst. Nothing you can tell me can be worse than that," I responded. And so she told me that I had cancer, either of the bile duct or gallbladder (the doctors wouldn't know which until the pathology report was back). I was stunned, but still knew that it was better to know than to not know.

That night was my "dark night of the soul," when I had to face my worst fears and realize they were undoubtedly true. After my speculation, alone in my hospital bed, knowing was better, but the news was still incredibly painful.

So today is one year past that dark, painful, unexpected day. I feel sad, remembering. I am amazed on many levels that I'm still alive to write this, and to remember, and I'm sad that I'm so sick at this point that I'm not able to enjoy life with any sort of normal energy. Outside my house, it is the most beautiful time of the year, with all of the spring bulbs and early perennials I've planted over the years producing their colorful blooms; red tulips, pink and white bleeding heart, my yellow water iris in the water garden, purple columbine, white ground phlox, many colors and textures. I am grateful to see them appear with so little effort on my part this spring, and I'm painfully aware that this will be my last spring of soaking in their beauty. And I am sad.

Feeling my Anger

2007-05-22T08:35:00.000-04:00

Out of the waiting, something has bubbled up . . . my anger. I realized in the last day that I don't want to be a poster child for dying well. That's totally apart from the fact that I don't want to die at all. Yes, part of me accepts that that is the hand dealt, and that the pace of things has picked up as the cancer has spread. It's no longer last September, when I received a clean scan and felt great, rather it's mid-May, now almost one year following my diagnosis, and the cancer has spread. Is spreading.

So, part of me does accept what's happening with my body, and part of me is just plain angry, screaming, shouting mad, that death is what's up. I always thought I would live well into old age; there's longevity in my family, and my parents, in their 80s, have always taken good care of themselves and are doing very well. I have been healthy all of my life, avoiding many of the problems that beset us as we age . . . no heart disease, no diabetes, no "female problems," no high blood pressure. I didn't even have my first surgery until I was well into my 50s, and then it was elective surgery. When they take my history at the hospital for each of the [many] procedures I've gone through in recent months, I often joke with the nurse that I was a very healthy person before I got cancer. So, being this sick, being terminally ill, is inconsistent with my internal view of myself.

And the part of me that doesn't accept this is just plain mad that I am faced with an aching body that doesn't respond as it should. I read novels, watch TV, remember what it was like to really worry about intimate relationships, work, negotiating the world successfully, and those all feel so far away. Instead, I am focused on what my body will and won't do in any given moment, or hour, or day.

Following a link from one of respondents to Leroy's blog, I found a website constructed by friends of a woman who died last year of ALS, Lou Gehrig's disease. I haven't read the whole site, but this poem seemed to speak to the limbo I easily find myself in these days, waiting . . . for words, for insight, for guidance about how to be in this new state.

Poem #2

Waiting

Pale morning light on my walls.
Nothing calls.
Purpose no longer clear.

My name no longer present on the roster of life.

Mind swirls in floodwaters of pain.
Grasping for something stable.
Nothing, nothing solid within reach.

What do I call onto my canvas?

No image arises.
Blank, stark, whiteness glares back.

Awful waiting game.

Tired of the nothingness.
Do I pull the plug?

Standing,
miserable in the dark, rain.
Shivers rattle confidence,
Cold seeps through me.

No bus arrives at scheduled time.
Where is the ride
that will take me home?

Ilene Kouzel August 23, 2006

The anger, the not-knowing, even the waiting, are just some of the stops along my journey. It seems to me that my task now is not to get too attached to any of them, but rather to be open to the journey and to what I can learn from the varied stops, starts, pauses along the way.

A quick check-in about my physical state. I'm feeling a little better each day, and hoping that continues. My energy is still not what I would like, and I feel as if I'm trying to discern what the "new normal" is and will be. I keep reminding myself that today I am just one week past my last internal interventions, and that my body is still adjusting. My appetite is still not normal, but is slowly improving, and I'm trying to eat more to build up my strength.

As always, thanks to you who read and comment to my musings. Thanks for being with me on this journey. Your company helps me feel less lonely.

Comments? Let's try this

2007-05-18T19:37:00.000-04:00

For reasons I don't understand, my last post doesn't have the little "Comments" box at the bottom. I'm going to try making this entry, to see if a comments box appears so folks can respond to "Waiting for the Words."

Waiting for the Words

2007-05-18T18:07:00.000-04:00

Since I began this blog many months ago, quite a few of you have asked me where I find the words, things to write about, things to think about. I've responded that ideas and topics just come to me, sometimes at odd times, sometimes when I'm casting about for something to write. For these last few days, I've been looking for the words, and since they still haven't come, I thought I'd share that with all of you. And of course only someone who loves words would choose words to express how she doesn't have any right now!

I can feel that I'm in transition, and that the form of that, and the words I use to describe it, haven't come into full focus yet. My body has changed, with the stents to keep everything flowing, and my awareness that the chemo seemed to have no effect at slowing or shrinking the tumor. My expectations about each day have changed, as the spring semester is over, my grades have been turned in, and I would next be expected to return to campus in late August. My relationship with my body has changed, and I'm not sure what I can expect it to do, as it recovers from all of the procedures of the past two weeks, and I assess what I can expect in terms of available energy. My spirit is struggling to come out from under the debilitating effects of the chemo, that seemed to leave me not myself. I am reading some spiritual books and materials again, and waiting for insight about this phase in my life. My mind may have changed the least, except that I do not feel troubled much by "monkey mind," reminding me of tasks undone, and things to plan for. And I still enjoy reading a good novel, and have been moving quickly through quite a few lately.

I am thinking about living and dying, about mortality and how dying is a part of life, even though we don't like to talk about it much. And how do we make the most of each day of living, whatever the length of time left? We have been talking with hospice in our home, and they have shared important, useful information and asked questions, some of them hard.

What's next? What will I have the energy for? There are many questions without answers, although I guess there were more words in the questions than I thought when I began to write this post. I invite you to join me in the exploration of the issues raised by this new phase of my life, as I continue to search for the words to express some of my internal process.

Procedures, Plumbing & Being tired of Doctors!

2007-05-16T08:27:00.000-04:00

Yesterday was my last scheduled day for "procedures" to keep my plumbing flowing, and I am happy to say that I'm home and feeling good, despite all of the poking and prodding about.

My first appointment, at 11:30, was to have the stents to my liver checked, and the external drain pulled (which wasn't a definite until my bilirubin was checked - it was down - and the doctor had gotten a good picture about what was happening internally.) The interventional radiologist went in to be sure that the stents at my liver had cleared the bile, and that all was flowing. He decided he needed another little piece of stent, and inserted that, and then, FINALLY, withdrew the external drain. He was a funny, chatty guy who talked with me quite a bit during the procedure. I was under "conscious sedation," but they had definitely not over-medicated me, and I was pretty aware of everything. It did hurt some, but was very interesting, to see the little bile ducts in the liver. After he was done, they hustled me by ambulance to the other "campus" of the hospital, where the urologist was to do his procedure. It would have been nice to have it all done in one building, but it clearly wasn't meant to be.

Originally scheduled for 3:30, I didn't get into the OR for the bladder stent until nearly 4:30, and so it was 7:00 before Patty and I were home. I slept most of the way home in the car, exhausted from the day, and then dozed through two hours of TV before we all went to bed. I slept well, woke without pain, and I'm looking forward to today.

I'm tired of writing about my physical state and this appointment and that doctor, so I'm hoping my next post will be on different topic. Finally, with the doctor/procedure appointments behind me, and, hopefully, with things stabilized, I can concentrate on enjoying the spring weather, and think about what else I want to do with myself. It's nice to ask myself: "What do I want to do today?"

Back from the Hospital

2007-05-12T11:01:00.000-04:00

I've been home almost 24 hours now from the hospital. We returned to some beautiful late spring weather - warm, with soft spring breezes, and many more spring flowers having "popped" open in our yard. I'm so happy to be home. It felt good just now to sit next to the water garden, watching the birds and the squirrels and the fish, listening to the sound of the water, and feeling the sun on my skin. My garden is such a source of joy right now; new flowers blooming, buds beginning to form. The dogwood tree we planted in honor of Lucy's birthday is full of showy white blossoms, and colorful tulips have popped up here and there. And, a very exciting development, in only the second time since I planted it seven years ago, my tree peony has a flower bud. I'll have to take pictures and post them soon. For today, there are just words to express my delight.

I am feeling good. I don't have much pain, and what I have is associated with breathing deeply enough to keep my lungs clear of liquid. A few days on my back in the hospital, and the doctors were worried about the possibility of pneumonia, so I'm working hard to keep my lungs working as efficiently as they can.

For four days, three nights, I was hospitalized. As you know from Monday's post, they were planning to keep me overnight on the day of the procedure, wanting to watch and make sure they didn't stir up some problems that would create infection. I did run a fever Tuesday night, so I was glad to be there. The procedure was through "interventional radiology," and its purpose was to insert a stent at the liver where it drains into my jejunum (because of my surgery a year ago). The procedure was considered successful, but they could see another blockage just "around the corner" in the jejunum (part of the top of the intestines), and were unable to insert a stent because of the bile that had backed up and some swelling. So, when I came out of Tuesday's procedure, they said they wanted me to rest on Wednesday, then do it again on Thursday. And of course doing it again Thursday meant keeping me there Thursday night for more observation.

And here's a surprising note about my hospitalization: I was on the oncology floor, which seemed to me to be very quiet, and except for the night I ran a fever and they were drawing blood and giving me antibiotics, I was able to sleep! It was amazing. I slept for 5 hours straight each night, and then got in additional time. I'd never heard of someone actually sleeping at night in the hospital!

The external drain is still in my side, but stoppered, as it were. If there's no indication I'll be needing it, it will be removed this Tuesday, and then all of my stents will be internal! (A really good thing!) Also scheduled for Tuesday is the replacement of my bladder stent. I'm hoping they can do both of these and still let me go home Tuesday night. That's my order, at least! If all goes well, I'll be done with these medical procedures for a while.

I'm a little fuzzy brained from the narcotics, so I don't know if I'm being overly detailed in all of this. I can say I'm relieved by the way the week went, despite the hospitalization I didn't initially anticipate. My biggest medical complaint this morning is the development of thrush, but I have a prescription and hopefully we can start knocking it out. (Thrush is a yeast infection in the mouth that we are susceptible to when we are hit with heavy duty antibiotics.) I've discovered there's a difference between things tasting funny due to thrush, and tasting funny because of chemo. Hopefully, I'll be able to get more food into me today!

So, that's my fuzzy-brained check-in. Thinking of all of you with love and appreciation as I've read all of your comments to my post and to Patty's this week. May we all enjoy a weekend of wonderful weather wherever we are. Love to all.

Update from Patty

2007-05-09T19:45:00.000-04:00

Just want to update everyone who is checking in to get an update on Lynne. It is Wednesday night and Lynne is still in the hospital. During the procedure to place a drain in her liver the docs discovered that the tumor was causing an obstruction in the bowel and it needed to be attended to as well. So she will have a procedure tomorrow to place a stent in the bowel to open up the bowel passage. Meanwhile Lynne has been fighting a fever, they don't know the cause but are giving her antibiotics and Tylenol, also she has had difficulty breathing because of yesterdays procedure - so they are giving her heavy duty painkillers and that seems to help.

I could go into much more detail but I am pooped and it is time to get the kids to bed. Keep sending prayers and good thoughts our way. We want to get Lynne home to enjoy these beautiful spring days. Hopefully as soon as tomorrow.

Blessings to all of you who have been supporting us all these weeks and months. I means more than you could know.

Peace,
Patty

Change of Plans

2007-05-07T20:41:00.000-04:00

I am going to the hospital tomorrow for a procedure, but not to replace the stent to my bladder. My backed up bile is seen as more serious (by me as well as my doctor), and they were able to get an appointment for the insertion of a stent to drain the bile from my liver. Ideally, this stent will be internal, and drain the bile into my intestines. If the doctor can't accomplish that, then he will put in an external drain. The kicker is that they want to keep me in the hospital overnight after the procedure to "watch" me and be sure everything has gone well.

I am not eager to spend a night in the hospital, but trust they will spring me as planned on Wednesday morning. When I went in with a blocked bile duct last May, I ended up spending 10 unplanned days in the hospital. I trust that won't happen this time, but my anxiety is up.

So, this is a quick post to report on the latest medical news. Now I'm off to bed to sleep well, I hope. We all know that getting a good night's sleep in the hospital is next to impossible!

Tonight at 8:00; Living with Cancer with Leroy on Discovery channel

2007-05-06T18:34:00.000-04:00

Tonight, Sunday, May 6, at 8:00 EDT on the Discovery Channel, there is the documentary with Leroy Sievers and Ted Koppel, followed by a "town meeting," all called "Living with Cancer." With the documentary and the town meeting, it's 3 hours long, but I'm pretty sure that the documentary is first.

Here's a link to Leroy's post about the documentary, from two weeks ago, and here's another link to the Discovery Channel's web page about the documentary.

I'm sorry I took so long to post this reminder, and I hope everyone will be able to watch - or at least tape it to watch later! For those of you in other parts of the U.S., I assume this show will air tonight, and I hope you can find it on your TV!

I've been tired today, but otherwise okay. My jaundice is increasing, which is worrisome, and I'm eager for the doctors to figure out how they will relieve it. So far, they've ruled out an endoscopic procedure, which doesn't surprise me, but they are still puzzling it out. I am still scheduled to have the bladder stent replaced this Tuesday. So that's a quick update on me. Thanks for all of your responses and words of support. I appreciate them more than I can say. My love goes back to each one of you.

The Cancer is Spreading . . . and a Decision is Made

2007-05-03T09:24:00.000-04:00

Finally, yesterday the radiologist report was in on Monday's CT scan, and I talked with both the surgeon, Dr. M, and the oncologist, Dr. J, about the results. While I'd been waiting for the results, I'd been moving toward some decisions about further chemotherapy. There's a lot of blunt and not-so-easy-to-take information in this posting, so sit down and catch your breath before you start to read.

So, the "okay" news is that the tumor in my abdomen is almost the same size as it was two months ago, which is to say larger than we'd like, and still impinging on my "plumbing" in a number of spots. The "bad" news is that there are signs of metastases to my lungs; they are still small, but they have grown in the last two months, while I've been on this aggressive chemotherapy treatment. That fact, along with the bilirubin and CA 19-9 numbers, suggests that the cancer is doing its thing without being slowed or impacted significantly by the chemotherapy.

The biggest short-term concerns are the areas in my abdomen where the tumor is impacting the function of vital organs. I'm scheduled to have the stent to my bladder replaced next Tuesday (apparently they are good for 3 months, and then need to be replaced). Hopefully, the urologist, Dr. D, can replace the stent with one larger in diameter, to increase the flow from the kidney. The second concern is my bilirubin, which had doubled in a few weeks over the last month. (And Patty reports that I'm glowing a little yellow these days; some days I think I can see it, others I can't.) Dr. J contacted a GI specialist yesterday, who will review my file and see what kind of stent he thinks can be inserted to relieve the back-up of bile. So, I'll have two medical procedures in the next few weeks to take care of my symptoms.

All this week, I have been thinking about my scheduled chemo appointment for Friday, and about being infused again with the two drugs, Gemzar and cisplatin. And my body was revolting. It made me feel sick to imagine putting myself in a situation where I would lose another month of my not-so-long life. Because, that's what I feel about the last month. I haven't been to work in a month, but have had others cover my classes. I have graded papers and made up the final exams, which are being proctored by others on campus. And I will calculate the final grades for students, which are due next Wednesday. But this was not how I wanted the semester to end, nor how I wanted to spend the last month, mostly horizontal and feeling awful. Thinking about all of this, I had decided before talking with the oncologist that I would not do the chemo again.

After encouraging me to try another round, Dr. J suggested that I try to biologic agent, sorafenib. I had looked up the side effects the night before and they looked a lot like the ones I'd already been through; fatigue, hand-foot syndrome, loss of appetite. Dr. J says the side effects have been less intense for patients who have tried this regimen, but I said I need a break. So, we left it there. I'll deal with the medical stuff first.

Dr. M, the surgeon, who has been so forthright and helpful all along in this process, said he understood my decision to forgo further chemotherapy, and that it makes sense to balance quality and quantity of life. He explicitly said that he does not think that receiving additional treatment will extend my life at all, and he also said that, barring some unexpected medical development, he could see me around for another 6 months, give or take 3 either way. I was actually happy to hear a number at this point, since the cancer is on the move, and I wanted an honest assessment of my medical state.

As a result of all of this, Patty has made a call to hospice, to initiate contact with them and see what services they offer and when it might make sense to use them. But don't panic! I feel good today, I'm up and about, and going to have my sparse locks trimmed this afternoon, in the hope that I won't lose much more hair since I'm off the chemo.

Know that I am feeling really good about this decision. Already today, 30 days post the last double infusion, I feel my energy and appetite to be stronger, and my spirits are good because I'm allowing for the possibility that I can have a good quality of life in the time remaining. The chemo simply wasn't allowing for that. If I sound matter of fact about all of this, it's because I'm on the other side of the decision, and not feeling conflicted. I've spent a lot of time and energy processing all of this over the last 10 days, and this feels like the most life-affirming thing I can do right now. For those of you who know me and love me, this may be hard to read, but all I can say is that it feels right. Keep those prayers and good wishes coming! And yes, do balance your knowledge of the new reality with prayers for a miracle. Miracles happen!

The Meltdown that Didn't Happen

2007-04-30T19:40:00.000-04:00

Last week, my blogger friend Jeanne (the "assertive cancer patient") emailed me and some other cancer blogging folks to suggest that we all blog on the same topic during the same time. Her choice of first topic was "Meltdowns," and you can read her introductions to the topic on her website here. I'm not mentioned there, because I wasn't sure I wanted to take on the challenge, even though I was having a meltdown-worthy week, as you know if you regularly read this blog.

Should I start with a definition? I think a meltdown is an emotional boilover, when suddenly everything reaches a point greater than we are capable of bearing. Have I had meltdowns in my life? You bet. Have I had meltdowns since my cancer diagnosis? You bet. What tends to trigger me, though, tends to be something besides the medical news, as if I can process the medical news internally, and then an emotional event throws me over the edge.

Why didn't I have a meltdown about all of the really hard medical news I was getting? Practically speaking, perhaps because no one emotional event threw me over the edge. In addition, it's hard to meltdown in a house with an 8 and almost-11 year old. Too hard to explain afterwards!

Plus, I think it's harder to meltdown while on chemotherapy. At least the drugs I'm taking seem to flatten a lot of my experience, make it hard for me to fully feel what I'm feeling. How can you meltdown when things are less than fully felt? Not easy.

One thing I am sure about is that those of us with cancer are entitled to our meltdowns, to those times when we feel simply overwhelmed by all that is happening and has happened to our bodies, minds, and spirits. Cancer can take over all of our lives so readily that it's hard to remember life before cancer. And folks who encourage us to always feel upbeat and chipper despite painful treatment, dire diagnoses, and the exhaustion of the disease, do themselves and us a disservice. We feel what we feel, we process information in the way we do, and while prayers and good wishes help us feel supported, they can't change our diagnosis and lived experience. Sometimes the best thing someone can do is express concern and ask if there is anything they can do. That simple question has spurred me to think of things simple or complicated that can be helpful as I live in Cancer World.

Reading my blogging friends posts about melting down, I see that they are talking about melting down in public, about things getting really out of control with the medical treatment providers. That makes me feel really lucky, because I have consistently good and responsive treatment, even if I wish that my oncologist were more willing to do a few things differently. I haven't had any public meltdowns in a long time (since before cancer), so I don't have dramatic stories to share as they do.

So, I didn't have a meltdown last week, and maybe I will, maybe I won't this week. I can feel in my body the resistance to going through the two-drug chemo routine again, as I feel that I lost the two weeks after that infusion to excruciating fatigue, and now it seems that the chemo didn't work. But, I had the CT scan yesterday, won't get results until tomorrow, and somehow, in the next few days, given the information I have, I need to decide what treatment option makes the most sense as we proceed. It feels like a very difficult decision to make with incomplete information - Where is that crystal ball when you need it? - and I'm not sure how these next days will progress. Stay tuned for the next installment!

Optimism and Hope

2007-04-28T11:31:00.000-04:00

Thanks for all of your suggestions, thoughts, prayers, anger for and with me, and general support since my post mid-week. I've certainly been up and down this week emotionally, as I processed the medical information and its implications for the future. And the truth is, gallbladder cancer is aggressive and dangerous, and my diagnosis and overall prognosis haven't changed since last May. I have Stage 4 gallbladder cancer, and it is a terminal diagnosis. I keep hoping for more time, and maybe I'll still have it, but the truth is, no one knows what the future holds.

We talked with the oncologist, Dr. J, on Friday, and he is eager to see the results of the CT scan, scheduled for this coming Monday, but we won't have the radiologist's report until Wednesday or so, and then at the end of the week, I'll meet face to face with Dr. J. The CT scan could provide some surprising good news, in which case we could consider going on with the current chemo. However, I'm liking the idea of stopping the chemo and trying the biologic agent he mentioned last month, sorafenib. It's not a chemo, so doesn't have the same side effects, and maybe I could regain my appetite and energy, and actually be able to do some things I would enjoy.

Regardless, I will undoubtedly have some medical procedures to try to bring things under control. I am currently scheduled to have the stent to my bladder replaced on May 8, and I'll go ahead with that if I don't do chemo on May 4. If my bilirubin continues to climb, we'll have to do something to drain the bile. If I'm not on chemo, my body should be able to tolerate these medical procedures better, and maybe I can regain some of the weight I've lost in the last four months.

So, why am I feeling optimistic and hopeful? Truthfully, I don't know. I think a lot of it is my temperament and my desire and inclination to see things in a positive light. I don't think I'm in denial; I spent a lot of time this past week feeling very sad, and internally processing the new information. It wasn't what I wanted to hear, but it's what was, what is, and I can't change it. And I guess I return to where I started. The news hasn't been good about my diagnosis from the beginning, and nothing has changed that . So, I'm left with the choice of feeling miserable about the situation, or just accepting what is and moving on, trusting that I will have more time to enjoy my family, my friends, the things I love to do, like gardening and baking and silk painting and scrapbooking. The truth is that none of us knows our future, nor how many days are left in our lives.

Not-so-Good News

2007-04-25T15:24:00.000-04:00

So far, this has been a tough week in the medical news department. On Monday, we learned that my bilirubin has doubled. That's not good, because it suggests that the chemo is not shrinking the tumor enough to impact the place where the tumor is pressing against my bile duct bypass. At some point, having bile build up is uncomfortable, and then dangerous. This is the condition that brought me to the hospital last May.

Then, today, we learned that my CA 19-9 numbers have doubled, to around 4,000. That's also very bad news, and a further indicator that the chemo is not working. So, I'm scheduled to talk by phone to the oncologist, Dr. J, on Friday, to go for a CT scan on Monday, and then to meet with him on Friday, May 4, when we'll re-evaluate the treatment plan.

On top of all of this, the latest infusion of Gemzar has sent my hair falling out at a more rapid rate. Folks don't often lose all of their hair with this drug, but at this rate, I'm soon going to have very sparse locks. So, on Friday morning, we go to the wig place so that I have a wig as an option if I continue to lose my hair in birdsnests-full clumps each morning in the shower.

All in all, my spirits are pretty low with all of this news. The bad news has been offset by some glorious spring weather, and the sight of spring flowers finally beginning to appear. Still, this is my life that's gradually being measured by this test and that, and I don't like the news. At all. Please keep your prayers and good wishes coming. I certainly need them this week.

A Successful Day at the Hospital

2007-04-21T11:03:00.000-04:00

This is an update on yesterday's two appointments at the hospital - one for chemo, and one to have the port inserted. The amazingly good first news is that my blood work was good. The numbers were slightly reduced, which is expected for someone on chemo, but were "excellent" in the eyes of the chemo nurse, especially given how I've been feeling. Dr. J, the oncologist, said it must just be the chemo itself leaving me so wiped out.

With good bloodwork, we proceeded with the infusion of Gemzar, the only drug for them to administer mid-cycle. I'm hoping with just the one that I will not be as wiped out over the next two weeks, when I go back for the whopping dose of the two. (And even then, Dr. J said he would reduce the dosage by 15-20% to help alleviate the side effects.) I was grateful for the saline and sugar infusions I got with the Gemzar, since the surgical procedure scheduled for the afternoon meant I had had nothing to eat or drink since midnight. And I was thirsty!

After the chemo, we went down a few floors in the building to day surgery and I was prepped for the insertion of the port (Port-a-Cath). We got to see Dr. M, my favorite surgeon, and to update him on my state. We are all now most worried about my liver, and the bile flowing from it. Dr. M created a bypass in May which has worked fine, but the tumor in my abdomen is pushing against it, and may be restricting the flow of bile. Everyone thinks I'm a little jaundiced, and my bilirubin reading was up two weeks ago. We didn't get the results from yesterday's bloodwork on the bilirubin, but if the bypass gets blocked, I am looking at a stent to keep it flowing.

The insertion of the port went really smoothly; I was in and out in no time, and without any soreness until a little later in the afternoon. Dr. M said he was able to insert a "small" one, so once it's healed, it probably won't even show in my ball gown! (Very funny since I can't even remember when I would last have worn something of that description!) But, lovely that he was thinking about me and how it would look. I do wear bathing suits! With a 12:30 appointment for pre-op, we were on the road by 4:30, and that included time to wait for a chest x-ray following the procedure to make sure everything looked good.

So, next chemo day, my port will be used to draw blood, and to infuse the drugs, which apparently makes it all go much more easily. Today, I feel good (yes, it could be partly the steroids to fight the nausea), and I'm enjoying our seasonably warm weather and bright sunshine.

Where is the Exit from Cancer World?

2007-04-18T16:00:00.000-04:00

Today I'm feeling better, my second good day since the last infusion, and I find myself awash in feelings. Some of them are generated from within, some in response to external events.

Last night, I woke in the night thinking about chemotherapy, side effects, cancer, lack of appetite, all of the things I struggle with now, and wondered, "Will I ever be able to think about other things in the middle of the night?" I am so tired of cancer, of being thrust without my consent or volition into this space that runs my life and leaves me exhausted. Where is the exit from Cancer World? I want to get off this roller coaster now!

Then, I think of the 32 people who died at Virgina Tech this Monday at the hands of another, who died without notice, without warning, without a chance to say good-bye to loved ones, and I wonder again. Is it better to know that death is knocking, and to have time to ponder its meaning, to begin one's good-byes, to take stock of a life lived, or to go suddenly? I am sure that the families of those who died Monday wish they had had time to say good-bye, but to be in the position of the one about to die? I don't know, and there is probably no answer. We don't get to choose. But I began this blog by asking "If you had six months or a year to live, would you want to know? How would you live during that time? What would you do?" And these events, and my approaching 11 months since diagnosis benchmark, have brought the questions back.

It seems that periodically on my journey I cycle back to these initial questions. This diagnosis of gallbladder cancer and all of the attendant miseries of treatment have left me exhausted, physically and mentally. I miss the person I was. On days like today, when I feel good, I have a clearer memory of who she is, but most of the last two weeks, I have felt frail, sick, weak and barely functional.

On Monday, I was on hold to speak to Leroy on Talk of the Nation during his appearance, but they never picked up on my call. Elizabeth Edwards called in, and so she got a bit of air time. I was glad to hear her talk briefly about her experience, and also about the politics of funding for cancer. There was a question about mortality that was dealt with briefly, and I wanted to talk about it. Why is discussion of death and dying such a taboo in our culture? Why is it so hard to get others to sit and just be with their own mortality, and that of another? Last summer I was so hungry to find others who would join me in this conversation, and slowly, they did materialize, but I was frustrated by the lack of guidance and process and support. The other topic I wanted to chime in on was about funding for research and treatment. This disease is affecting so many people, and the government is not fully supporting the work that needs to happen for breakthroughs to occur, and more people to live!

And on the show, people in remission from cancer and currently struggling with treatment, were all eager to talk. Where do we take our stories? Who will listen? In Cancer World, it seems the other residents of the moment are the most likely supportive folks, but why can't we share with the larger world the challenges of our journeys? Why is it so hard to get the media to focus on the lived experience of those of us with cancer? (This was also a topic on Monday, and even Leroy the journalist said he thinks this is an area that journalism doesn't have quite right. )

So, I'm frustrated and tired, and wanting to get my ticket punched and leave Cancer World. I want my normal life back! I want to enjoy food again, have energy to work, delight in the noises of children without getting irritated, I want my body to work the way it used to. I can't take any of it back, and I didn't ask for it, but I am really tired of it all now.

Information on Ports

2007-04-17T09:38:00.000-04:00

Just as I was preparing to have a port (or port-a-cath) inserted on April 2, one of the other cancer bloggers I read regularly wrote about having her port removed. She even has a photo of what hers looks like, and commentary by a surgeon about the process of inserting and removing ports. If you feel completely in the dark about the whole procedure (as I was), her post is worth reading. That appointment was canceled as we revisited my whole treatment plan, and now I am scheduled to have the port inserted this Friday, April 20. And the best part of the new appointment is that my favorite surgeon, Dr. M, will be doing the insertion.

As I mentioned, my fellow blogger spends some of her post quoting from "Orac" a blogging surgeon/scientist, who writes about ports, and I'm going to borrow from her approach and include some of his information as well.

Orac begins, "In cancer, the goal is different [than in dialysis]. It's shorter term, and the tools used are less permanent. The goal is to give the patient durable vascular access that allows chemotherapy to be given, usually over a few months. Some chemotherapeutic agents are very harsh on the veins, and because of that it's highly useful to place a catheter in a large central vein with high flow. . . . "

Then he describes the port itself: "Finally, there are totally implanted ports (like the Port-a-Cath), where the entire assembly is implanted under the skin, and the port is accessed through a resealable diaphragm using a special needle inserted through the skin. These can be left in place for months or even years and tend to be the first choice for chemotherapy. Unless a patient is thin enough that it's possible to see the outline of the metal part of the port sticking up under the skin, they're basically invisible."

Here's his description of why a patient would want the port inserted: "If you're a cancer patient who needs a prolonged course of chemotherapy, your port is your friend. Your blood can be drawn through it (and you will need frequent blood draws). You can get your chemotherapy through it without painful needlesticks and burning out of veins. As I said before, injecting chemotherapy in to peripheral veins can be quite painful for some drugs, and a port will eliminate that problem. These two things alone can go a long way in improving a cancer patient's quality of life. It is true that ports aren't without their complications. They can become infected and require urgent removal. They can clot, necessitating treatment with clot busting drugs. Sometimes they can cause a clot in the large blood vessel in which they are placed, leading to arm swelling and even facial edema, not to mention urgent removal of the port. There can be rare misadventures where the port catheter breaks and goes flowing off in the bloodstream, requiring angiography to fish it out. However, on the whole, ports do far more good than harm, and, before radiologists started doing these procedures (which they are doing more and more) general surgeons were the ones who put most of them in."

And finally, speaking as a surgeon, he comments that "It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there."

Before I read Orac's post, I didn't know that radiologists were sometimes inserting ports, so when they called me to schedule this new appointment, I said I wanted a surgeon, and I wanted Dr. M. (The chemo nurse, with 25 years of experience, had mentioned that he puts in "superb" ports!) It will be good to have a familiar face before the procedure, and to update him on my state overall. This procedure is done under "conscious awake" sedation, not general anesthesia.

The plan for Friday is to have blood drawn and tested first thing at 10:00 a.m., and to hope that all of my blood numbers are high enough for chemo and then the port insertion. I'm scheduled to have just the Gemzar infused (not the cisplatin), and then, my appointment for the port is at 12:30. The kids are on school vacation this week, and my good friend Sandy is going to accompany me to the appointments while Patty keeps track of the kids.

Today I was going to go into Boston to teach, but just couldn't muster the energy, so my classes are being covered again. Next week is the last week of classes, so things are wrapping up, and I have lots of papers to grade still. I'm glad the semester is ending, as being a full-time faculty member and a full-time cancer patient has been very challenging over these months.

"My Cancer" with Leroy on NPR

2007-04-15T14:49:00.000-04:00

This past week in his blog, Leroy Sievers has been mentioning that he will be on Talk of the Nation on NPR (National Public Radio) this coming Monday, April 16, from 2:00-3:00 talking about his blog "My Cancer" and asking people to tune in.

If you can listen, please do. I will be listening, and will try to call if they are taking calls from folks not in the live studio. Leroy has been an inspiration to me over these months as I've written my blog and struggled with my cancer diagnosis. If you won't be by a radio then, the show may be available for podcast, to listen to later. The Boston affiliate of NPR is WBUR, at 90.9 FM.

Leroy has managed to create a national community of those struggling with a cancer diagnosis and treatment by honest, vulnerable, challenging words that brought those affected by his words together in a virtual community of love, support, and learning. Leroy has just had some excellent news, that there is no evidence of disease, and he's trying to figure out where to go from here with his life, anticipating a future that seemed unlikely at best just months ago. He doesn't believe the cancer is gone, just lurking, but the absence of tumors means he can think about the future differently.

In anticipation of the show, this past Thursday I received a phone call from one of the NPR folks working on this show, named Ari; I was called because I've been a regular poster on his blog. He had emailed me the day before to ask if he could call. For a short while following his phone call, it looked as if I might be heading the Boston studio to be a long distance "live" contributor to the show, but they must have found other folks, as I didn't hear back from him.

I told Ari that I thought Leroy has a unique ability to speak to the universality of the cancer experience, and to broaden his experience so that it relates well, and speaks well, to others. He is astonishingly vulnerable in his posts, despite being a male journalist, and has shared the challenges of chemotherapy, the pain post-treatment, the awful waiting to hear the news from tests, and even how it feels to hear "bad" news about results, and then get a phone call the next day saying it was a mistake, and no new tumor was found. So, I said good things, will say them when I call in Monday, and think them about Leroy, but it looks like part of my "15 minutes of fame" will not participating on Leroy's ToTN show tomorrow.

Leroy also mentioned this week that the documentary about his journey with cancer will be aired on Discovery Channel on May 6. I'm going to mark my calendar, and I'm sure I'll have more to say about it as it's closer.

Yesterday was a good day of consistent energy (my body's birthday present to Patty, perhaps?) and I treasured the day. Today I'm more tired, and just finished a post-church nap. Friends at church were praising me for listening to my body this week, but I have to say that my body didn't give me a lot of choice. It told me what I could and couldn't do, and I responded dutifully. This week I'm hoping to be back in the classroom, but I've already thought of some adjustments to my teaching day to make it less taxing energetically. Thanks to all of you who encourage me to keep taking it easy, and who remind me of your love, prayers and support.

On the Virtues of Sitting Still

2007-04-14T11:42:00.000-04:00

Yes, I've been sitting still and resting a lot because of the chemotherapy, but, inspired by Philip Simmons' book Learning to Fall: The Blessings of an Imperfect Life again, I want to say a few words in praise of slowing down, sitting still, and discovering our own internal quiet rhythm. I am also happy to say that on this Saturday morning (Patty's birthday!), I find myself rejoining the world of functional adults. I was up and making her breakfast waffles (which turned into pancakes, but that's another story) and was able to stay focused without needing to lay down. That feels like an accomplishment!

Simmons is in a unique position to discuss the virtues of slowing down and sitting still, because his illness, Lou Gehrig's disease, took away over time his choice about movement. The disease robs the body of an ability to use the nervous system, and over time, results in a shutting down of voluntary and involuntary muscles. In this wonderful book, Simmons weaves his own experience with observations of nature and spiritual teachings to share his reflections and what he has learned as his body has slowly stopped obeying his will. I mentioned in an earlier post that our church book group has been reading and discussing this over Lent (and we're not quite done yet). I missed Wednesday night's discussion because I lacked the energy to sit through the discussion, but the focus was on sitting still, slowing down, and finding that place inside that would dictate our rhythms more if we just let them. At one point, Simmons point out that "our challenge is to do nothing in the midst of our doing, to let our actions issue from a still center, to find within ourselves what T. S. Eliot called 'the still point of the turning world.'"

Sitting still is about being quiet and more than that. It's tuning in to ourselves, and finding what nurtures and speaks to us.

Before I was diagnosed with gallbladder cancer, I was a too-busy professional adult and parent, like so many in our culture. One thing I have remembered in these months since my diagnosis is the virtue of sitting quietly, and for me, observing nature is a valuable way of recharging and getting in touch with that still point.

From the time I built my first water garden, about a dozen years ago, I loved to sit by the water, watch the fish, listen to the sounds the water makes rushing and flowing, and just being quiet inside. No lists, no worries about what was undone, just quietly sitting.

Today the sun is shining and it is warmer than it's been (maybe 50 degrees?). I just sat out by the water garden and took these pictures. The fish are stirring, bringing their bright orange, yellow, white and black movements to the water. The water has cleared, and I can see a snail making its slow path, and occasionally a lazy frog swimming through the water. Watching them, I can allow myself to think of nothing else but being there, alive, noticing that spring is finally beginning, and that life goes on.

This week on gray, stormy days, I sat inside and watched the birds flying and eating at the bird feeders. The greatest delight was to see that goldfinches have shed their winter coat, and grown a beautiful lemony yellow spring covering. They were bright spots of color in a dreary gray-brown backdrop. The cardinal would come and add his bright red color as well.

I hope each of you will consider the virtues of sitting still and finding your center, whether it is in meditation, nature, or some engrossing quiet activity that takes you out of yourself. And please don't worry that I'm overdoing it today! It's about time for my mid-day nap!

Happy Easter! - a little late

2007-04-11T18:29:00.000-04:00

This evening, 8 days after the last chemo infusion, finds me feeling marginally better, with enough energy to at least begin a new post about Easter. We took some good photos of the kids celebrating Easter, and I wanted to share them.

One of our tradition is coloring eggs, and I still had energy on Saturday morning to color with the kids. Here's Nathaniel, being an 8-year old boy, and Lucy, looking charming and holding the basket of eggs.

Another tradition is an Easter egg hunt at Nana's house. We fill the plastic eggs that are so readily available with candy, and the kids hunt all over the yard. Great fun! Nathaniel searched with cousin Deana, and Lucy searched with cousin Brian.

What would Easter be without flowers? With our unseasonably cool spring, my hyacinths are just beginning to come up, and so were not blooming on Sunday. My Lenten rose, which is related to my Christmas rose (see post of January 29), is up but not showy. Hopefully, it will survive tonight's forecast snowstorm (yes, really, on April 11) and continue to open up.

Those are some photos and some memories. Thanks to all of you who send prayers, healing thoughts, good wishes and reminders to listen to my body. I'm doing my best to take it slow and let the chemo do its work. I do hope I'm on the upswing energy-wise until the next infusion. This week has been tough.

A Short Post on Fatigue . .. O/_/\_

2007-04-10T09:21:00.000-04:00

So, that's me, reclining, which is all I seem to feel like doing these days. This last round of chemo has knocked me for a loop, and after being upright for a little bit, I just want to lay down. The oncologist and the oncology nurse both assure me this is within the range of normal, that the new chemo drugs are very strong and can knock out your blood cells, leaving me tired and listless.

If I don't start to feel peppier by the end of the week, they will draw blood, see if I'm anemic, and if I am, do an infusion. So, there's a plan.

In the meantime, I'm staying home from work, too tired to imagine getting myself to work and then teaching, and my very supportive colleagues, Mary, Graham and Chris, are covering my classes.

Life goes on, but I'm living it in a prone position for the moment!

Fatigue . . . and other side effects

2007-04-07T18:36:00.000-04:00

I'm tired, bone tired, today, and I'm sure it's the chemo and nothing more. The chemo nurse told me that a few days post infusion I might feel "flu-like symptoms," aches and pains like the flu. I don't feel achy, but I've felt increasingly tired and sleepy yesterday and today. I don't feel like moving, but resting doesn't really revive me, either. I remember Leroy, in his blog last fall, referring to a tiredness, a fatigue, that no sleep can resolve. I didn't feel that degree of tiredness during my first chemo regimen, but I surely am now.

The good news? Unlike with the first chemo regimen, I can drink cold beverages, a great relief, and stay hydrated more easily. My appetite is marginally better, and I feel less vague nausea. Don't know how that will change when I stop taking the steroids, but I guess the danger of nausea and vomiting is greatest for the first three days.

The other good news? We went mattress shopping this afternoon, to replace our 10 1/2 year old mattress, and it was a good shopping to do when you just want to lay down! I checked out the mattresses and Patty talked with the sales guy. I've seen the chiropractor the last few weeks for a sore spot in my back, and this week he asked me how old our mattress was. I had to confess that we bought a new TV and a trip to St. John before the mattress! At the store, they weren't busy, so it wasn't difficult to make a decision, and we will have our new mattress and a new twin mattress for Nathaniel's bottom bunk delivered next week. Resting on the job, mission accomplished!

Thinking about your comments this week, I wanted you to know that I love the suggestion of the tumor "melting, melting!" like the Wicked Witch of the West in Wizard of Oz, and even incorporated it with a new visualization that came to me. In it, the tumor shifts from being the fierce Portuguese Man-o-war I've seen since this new tumor invaded my insides, to a jellyfish blob like we see on Cape Cod beaches later in summer. Those clear jelly blobs easily dissolve in the sunlight on the beach, so this one is doing that, and melting!

I loved the music and suggestions for "Shrink that Tumor!" Lucy made up a cheer, but she can't remember the words from day to day. They are always entertaining, though, and I try to get her to chant it at least once a day. Any other rhythm or song suggestions still accepted!

And about my post on mortality this Holy Week, I was deeply moved by the sharing of those of you who resonated with what I had to say, and who could find words to articulate your own journey. Your stories and reflections enrich us all.

The waiting for Easter is almost over. May your day tomorrow be full of celebration and joy, family and friends, love and sunshine, and the wonder of life renewed.

Some Thoughts about Mortality for Holy Week

2007-04-05T15:36:00.000-04:00

Before I share my thoughts on this topic, I want to reassure you that I'm not feeling gloomy or sad today, and in fact, I've had a little "steroid energy buzz" that led me to sort through some clothes in the closet to give away. I'm about ready for a nap, so it's not an excessive buzz, but except for nausea and vomiting first thing this morning, I'm feeling good. But this post isn't about my physical state; I just wanted to provide that reassurance.

On the Christian calendar, Holy Week marks the last days of Jesus' life on earth, including Maundy Thursday (today) which commemorates the Last Supper, and Good Friday when we remember the crucifixion. Then, the joyous day of resurrection is celebrated on Easter. Easter is an upbeat holiday, both spiritually and secularly, and so many of us love to celebrate Easter, but may skip over the more serious days leading up to it. But these days of Holy Week are somber and call for inner reflection. Since I've been doing a lot of that over past months, it fits my state of mind to think about mortality during Holy Week.

From a book of daily readings by Madeline L'Engle that I treasure comes this poem, which I read on Monday of this week before meditation.

From St. Luke's Hospital (2)

If I can learn a little how to die,
To die while body, mind, and spirit still
Move in their triune dance of unity,
To die while living, dying I'll fulfill
The purpose of the finite in infinity.
If God will help me learn to die today,
Today in time I'll touch eternity,
And dying, thus will live within God's Way.
If I can free myself from self's iron bands,
Free from myself not by myself, but through
Christ's presence in this simple room, in hands
Outstretched in holy friendship, then, born new
In death, truth will outlive the deathly lie,
And in love's light I will be taught to die."

(from Madeline L'Engle, Glimpses of Grace, p. 80)

"To die while living, dying I'll fulfill / The purpose of the finite in infinity." What is the purpose of our short finite lives, spiritually and philosophically speaking? Our purpose along a stream of time that goes back farther than we can imagine and into the future over time we can't conceive of? We can so easily got caught in thinking that life is meant to be easy, to be happy, to be successful (however we define that). But what if life is about none of those things, really?

During Lent, about fifteen of us from church have been meeting in a book discussion group to talk about the book "Learning to Fall: The Blessings of an Imperfect Life," which I've linked to almost from the beginning of my blog. In our discussions, I've talked with the group about my experience since the diagnosis of gallbladder cancer of taking on my mortality, and wondering about the purpose of life. That has included wondering whether or not we humans may be just plain wrong about why we are here. It's a heavy notion, it's difficult to articulate. In his book, Simmons comments on this idea, in a wonderful chapter entitled "Mud Season:"

"Before my illness I, like everyone, had always spent much my time in the mud, only I didn't know to value it. Mud seemed only to block my way. I had spent my life in pursuit of knowledge and happiness, only to find out that both were overrated. For what is knowledge without faith, and what is happiness without sorrow? The path to resurrection lies through the mud because only through pain and sorrow do we grasp the necessary truth offered in the Ninetieth Psalm" [which he quotes from, but I won't; it's about our mortality].

On a much lighter note, the question makes me think of the greeting card sold in alternative stores that says "What IF the hokey pokey is what it's all about?"

I have no answers these questions, or solutions to my ponderings. I do think that life is much more complex and mysterious than many/most of us think, and certainly than I have thought most of my life. We so easily look in all of the wrong places for what will be most deeply fulfilling, and then feel surprised when we are still unsatisfied. In the last 10+ months, I have made quite a few changes to my life, in response to my diagnosis, my energy, and my shifted sense of priorities. I still miss some of the things I used to find quite satisfying, and I'm also finding a new sense of peace with this slower pace, with more time for contemplation, and for the opportunity to connect with others that my disease, and this blog, have provided.

Holy Week offers us the chance to think about our mortality, and how we live our lives. Whether or not you identify as a Christian, the fact that this one man chose to give his life for others, and then, in his resurrection, founded a whole new religious faith based on love of neighbor and God, is a powerful teaching. In the stories of his last days, we hear the human Jesus struggling with his destiny. Since my diagnosis, I have resonated many times with these words of Jesus, spoken in Gethsemane on the night before he died, "My Father, if is possible, may this cup be taken from me, yet not as I will, but as you will." So many times in these months I have wished not to be sick, not to have gallbladder cancer, not to have a terminal diagnosis. Slowly, I have come, if not to fully accept this diagnosis, at least to accept that this is the hand dealt now, and my choice is how I deal with it.

May the deep lessons of Holy Week touch you this year as they have me, and may you find, emerging from the mud of this somber week, that Easter is especially joyous.

"Shrink That Tumor!" - New Chemo Regimen

2007-04-04T20:25:00.000-04:00

I had my infusions of the two new chemo drugs today, and tonight I'm doing okay. In fact, I feel better than I have after the previous three infusions (of oxaliplatin), and I was worried about feeling worse because there were two drugs instead of one. I found out that the decadron they infuse as an anti-nausea med is a steroid, and some folks get a bit of a buzz from the drug. I definitely didn't notice any such thing the other times! Since the new chemos are more likely to cause nausea, I also have some decadron to take orally over the next few days.

We had a long day in Boston, arriving around 10:00 to have blood drawn and a urine sample taken. My urine had been discolored, and I wanted to have them check for bilirubin in my urine. (This would not be a good thing, because it would mean that the tumor is messing with my bypass that delivers the bile from my liver.) They lost the first sample, and I gave them another one later, and the final word was no bilirubin in my urine. Good news. The color was blood (from the stent) and there was no sign of infection.

My bloodwork was good, and we moved toward the infusions, but it was 12:30 before they began. I had infusions first of cisplatin, and then the Gemzar (gemcitabine). The second drug is more likely to cause soreness in the arm. Despite that, I handled the chemo into my arm pretty well. Since my port appointment for this past Monday was cancelled, I have rescheduled. More details below!

We were finally finished with the infusions at 4:00, and then I saw Dr. J, the oncologist. He says that this chemo regimen is more likely to mess with my blood counts, so rather than an infusion every week for two weeks, with a week off, he's suggesting two weeks between infusions, with only the gemcitabine on the mid-infusion.

In two weeks, then, on April 20, I'll go for an infusion of the gemcitabine, and that afternoon, I have an appointment to have the port surgically placed by my favorite surgeon, Dr. M! It will be a long day, but we'll have taken care of the port finally.

I have coverage for tomorrow's classes, so I can stay home and sit in my favorite chair, which tends to be all I feel like doing the day after chemo. And if I have some extra energy, I'll grade some of those overdue papers!

At the end of this long day, I realized how much we need to shrink that tumor so that I can worry a bit less about my innards, and gain more time feeling good and able to live my life. So - new motto - "Shrink That Tumor!" No more messing around - We want you out of there! If any of you think of a good song, or hip-hop rhythm to go with the sentiment, pass it on! Thanks as always to those of you who read and respond and send loving, healing energy.

Images from St. John - Vacation!

2007-04-02T19:38:00.000-04:00

Ah,, St. John! Warm days, pleasant nights, lots of sun and warm water. . .

These photos aren't in any particular order, as downloading them in order is more challenging than it should be. . . .

There was live music many nights at the pavilion at the campground. Here the steel drummer showed Lucy, Nathaniel , Judy, and Patty how the drum works.

On the top right, Lucy and I are standing at Ram's Head, a beautiful cliff arrived at by a one mile (HOT) hike. The view, as you can see, is stupendous from the cliff, and we were glad to have made the hike. You can also see that the southern part of the island is drier and has cactus growing!

Below is Lucy drinking the coconut milk from a coconut (okay, we bought it at the local supermarket!), which was one of her goals for the trip.

Lucy and Nathaniel made friends with twins from Canada, Eric and Adrianna (and it turned out they had played together six years ago, too!), and they all had a great time with this half-broken air mattress.

One tradition on St. John is to drive down island to Vie's Chicken Shack and get her garlic fried chicken. Or, if she's out of chicken for the day (which can happen easily), you can eat conch fritters, meat sauce over beans and rice, or a hot dog (Nathaniel's choice). The food was good, and it was fun to drive across the island to her shack.

When we walked to Cinnamon Bay Beach from our campsite, we walked a path that emerged like this onto the beach - beautiful!

When we drove our friend Judy, who vacationed with us, to the ferry, we took a few pictures at this scenic site.

Photos from vacation! Next post on other matters, although there's no news since Friday. Stay tuned!

Medical Developments this Week

2007-03-30T20:53:00.000-04:00

Where to begin? It's been quite a week in the medical department, and I haven't posted because I wanted to have something more concrete to say.

It started Tuesday, when Patty called Dr J, the oncologist's, office to see about my latest CA 19-9 numbers; they always take a few days more than the other bloodwork. So, here's the bad news; my numbers had tripled! From around 768 on March 6, my numbers had climbed to 2,099. Ouch! So, we were worried, and the doctor was concerned about getting a fuller picture. He and I hadn't met face to face since February, and he wanted me to come into the office this week. I made an appointment for this morning, and his nurse, Sue, also let us know that they would cancel the port appointment until we had a plan for moving ahead.

We met with Dr J this morning, and I told him I'd done okay since the infusion last week. My biggest complaints are still lack of appetite, nausea, fatigue, and this week, constipation. The implant - spot - in my side has been sore, and feels bigger and harder, which is really, really worrisome. If that tumor is growing, what's happening inside? As we talked about my side effects, and our vacation, Dr. J commented that I'm very positive about everything . . . He also said that he's concerned that the current chemo regimen is not working. (I share that concern.)

He presented us with a few options. The first was to try a pill that's a biologic agent, called sorafanib. Some folks get good results, but it can take a few weeks to kick in. The second was to shift chemo drugs to a combination of gemcitabine (Gemzar) and cisplatin. They are both delivered by infusion, so no pills. There have been more studies of these two drugs with
gallbladder cancer, and some folks have had good response to them. The third option was a less aggressive chemo drug, taxotere.

Because I've been concerned about the tumor growing, I wanted to go for the most aggressive treatment, which is the two-drug chemo combination. So, we're going to do an infusion next Wednesday (both drugs), and then again the following week (just cisplatin), then a week off. Somewhere in there, I'll have the port put in, since the Gemzar is difficult for veins to tolerate. I just have to wait to get a new appointment. Have I mentioned that I am powerfully tired of doctor and hospital visits?

My head is spinning a bit tonight with the intensity and all of the changes in plan over the last few days, but the new treatment feels right. I don't want to give either of the tumors any more time to grow than they've already had! Thanks for your continued prayers, good wishes, and, from some of you close by, soup deliveries! It means so much to feel that ongoing support and love as we continue this cancer ride.

Ten Months and Still Here! The Winter Tumor.

2007-03-27T09:28:00.000-04:00

This past Saturday, March 24, marked ten months since the major surgery that revealed that I have gallbladder cancer. The diagnosis sounded like a death sentence . . . rare, incurable cancer . . . many folks live only two to six months post diagnosis . . . we don't know how your disease will progress . . . stage IV cancer, with "distant" metastasis . . . if you take this trip to the southwest you need to watch out for a recurrence of jaundice, for other evidence of spread of the disease and seek treatment immediately . . . yes, it would be a good idea to know where the closest hospital is as you travel . . .

Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).

And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?

Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.

With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!

Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:

"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."

"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.

Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.

Peace Prayer of St. Francis of Assisi

2007-03-25T14:32:00.000-04:00

Since my diagnosis of gallbladder cancer, I have found that I have been drawn to the prayer commonly known as the Peace Prayer of St. Francis of Assisi. While he was born in 1182, the prayer itself didn't appear in printed form until 1912, so it seems likely he didn't author it. Still, it has such a powerful message, I'm not surprised that it is so popular. Here's the prayer:

Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;

O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.

For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.

I so appreciate how the words turn around our normal expectations about the way to live and be happy, and to thrive. We can think that the meaning of life, having a full life, is all about us and getting what we want and believe we need, when often life is most deeply about reaching past ourselves to see how we all are connected and need each other. The words feel very healing to me.

Brugh Joy, in a workshop I attended, told a story about St. Francis that spoke deeply to me. Francis was born to wealth, and, while he wasn't always happy to be wealthy, he avoided unpleasant situations and people for much of his young life. But God was speaking to him, and at some point, he realized that he needed to do what he most feared. Brugh saw this as an example of a person challenging his shadow, that disowned part of ourselves, by doing the thing we most fear, by facing the thing that most challenges us. So, the story goes, Francis sought out a leper, whom he feared, knowing that the disease was highly contagious, and he put his hand into the wounds of the leper. In doing so, he faced his deepest fear and found himself transformed. After that, he was not the same man. Brugh used this story to illustrate how we can be transformed by facing our fears and doing the thing we fear the most. While I have no illusions that I'm like St. Francis, dealing with cancer, having a life threatening diagnosis, and being faced very powerfully with my mortality has certainly required me to face some of my deepest fears. And I'm still struggling with all of it . . .

For Christmas last year, I asked Patty to give me a mobius bracelet of the St. Francis Prayer. (A mobius bracelet has no beginning and no end, because a twist in the metal keeps the circle - and the words - going; see illustration at top of this post.) I had discovered them for sale on Healing Baskets, a website that sells custom made baskets for folks who are sick, including those with cancer. My friend Mary sent me a basket last summer, and it was filled with special wonderful items to heal and soothe and support (bath salts, a pad to warm in the microwave, ginger candy, and so on), and when I ordered a basket for a friend last fall, I discovered the mobius bracelet with the St. Francis Prayer. I like silver anyway, and the silver bracelet is just $75.00. So Patty gave it to me, and I've worn it most of the time since Christmas (except when we were in St. John, because I didn't want to worry about losing it).

Wearing the bracelet, having the first part of the prayer there and available to read through and meditate on is a wonderful soothing exercise. I love the prayer, I love my bracelet, and when my illness has me really down and worried, I feel better remembering the prayer.

Day Two of New Chemo Cycle

2007-03-24T10:49:00.000-04:00

I'm doing much better so far with this chemo cycle, and felt much better yesterday following the oxaliplatin infusion yesterday, and beginning the two weeks of Xeloda tablets.

The chemo nurse, Linda, sensed my anxiety when I arrived, and we talked about what happened last time, my worries that I would leave again feeling so awful I could barely walk, and my concerns about the lingering side effects. Dr. J, the oncologist, called from Wyoming, where he was lecturing to medical students, and updated me on the details of the changes in my chemo regimen. He ordered a calcium/magnesium infusion before and after the oxaliplatin, because it seems to offset the impact of the drug on nerves (neuropathy), and that did seem to make a big difference yesterday. He also reduced the oxaliplatin dose by 20%, and the Xeloda dose by 33%, so I'll be having a bit less of both chemos through this cycle.

When I left, my legs weren't hurting, as they were last time, and I didn't have numbness in the back of my throat. And today I don't have as strong a sense of my body just being completely out of whack as I did. I did still have trouble with pain in my arm when the infusion was about 3/4 complete, so I asked Linda to stop it. So, we stopped using the one arm and went to the other, and went to a larger vein in my arm, near my elbow for the end of the infusion. Linda was upset because she thinks that the oxaliplatin is just too tough for arm veins to tolerate, and that they should establish a policy that everyone receiving the drug has a port.

Anyway, after going to a second vein yesterday and having everything slowed down as a result, I'm ready for a port. Linda must have ordered it right away, because I got a phone call from the "line coordinator" soon after I got home, and I have an appointment to have it inserted on Monday, April 2, with my appointment beginning at 6:00 in the morning (Yeow!). Since I don't want to do another infusion without a port, I'm glad we have a plan. The port is inserted surgically in the chest below the collarbone, and provides easy access for the chemo infusion. And because this is a larger vein, the soreness with arm infusions just isn't an issue.

I also had a good conversation with Linda about my problems eating and my lack of appetite. After talking with her, I feel as if my problems have been normalized. Lots of people with various forms of chemo have lack of appetite, food tasting funny, decreasing appetite as the day progresses, and other odd things about eating, it seems. We talked about drinking as much as I can so as not to get dehydrated, about eating frequently, expecting to be able to eat less at a time than I used to, and just dealing with what is but eating as much as I can. I've lost 15 pounds or so in the last two months (some of it due to the stomach virus), and Linda said I need to stop losing weight and regain at least some of it. So, I feel normalized in my experience and challenged to keep getting more nutrition into me. She also gave me a book with recipes especially attractive to and useful for patients on chemo. It has lots of soup recipes, which I'll have to try when I have energy. I've been realizing that liquid food like soup tastes especially good to me.

On the subject of losing weight, I had something very funny happen to me while teaching on Thursday. I was wearing a pair of my favorite stretch corduroy pants, which are very comfortable, and I'd walked from the train station to my office without incident. However, when I was teaching, talking, and raising my arms to write a lot on the board, I began to realize that my pants were beginning to fall down. I slipped behind the big media center and hiked them up, and then found I had to do that repeatedly. Fortunately, they didn't end up around my ankles, which would have been beyond embarrassing, but it was a struggle to focus on my lecture, answer student questions, and keep up my too-loose pants!

So, that's my medical update and my medical state for today. It's a relief to feel more normal than I did last time.

This week was hard, with a need to focus intensely on work before I felt rested from traveling, and with my anticipatory anxiety about yesterday's chemo. So, I'm glad to be on the other side of all of that, able to nap today and tomorrow, and ready to get back into the rhythm of our daily routines. My continuing thanks to all of you who read this and follow my journey, and who post your words of love, support, and humor!

Home

2007-03-21T13:48:00.000-04:00

We've been home since late Monday night (a day and a half ago), and Patty and I are back at work, and the kids back at school. Our trip was wonderful, and so relaxing that I didn't even compose any blog entries in my mind! Things have been busy since our return, with unpacking and work, so I've been waiting for inspiration on posting. What a delight it was to return and read all of the comments after my last post before we left. I felt well supported and prayed for! I haven't downloaded any pictures from our vacation, but should have some ready by my next post.

While we were away, we swam, snorkeled, sat (or played) on the beach, and generally relaxed. It was wonderful to be away, and to put down all of the details of daily life. Since we were camping, we went to bed early, and read for a while in our tent, and got up with the sun in the morning.

Since we were camping, we had a few camping challenges. The sand fleas and mosquitoes really LOVED Nathaniel and Lucy, and we had some nights with lots of complaining about itchiness and trouble sleeping. We finally figured out how to spray the insect repellent around the tent, tie all of the little ribbons (no zippers in this tent!), and minimize the bugs. And, we had a resident lizard in our tent. We kept encouraging it to eat lots of fleas and mosquitoes, but it had trouble keeping up with the volume.

The beauty of camping at Cinnamon Bay Campground in St. John, USVI, is that the beach was just minutes from our tent. We could roll out of bed and check the water, go for an early swim, stake out some shady territory on the beach, and go back to our site for breakfast. We visited some other beaches and did some hiking, but the kids like staying put once they had made friends, and so we stayed close to the tent many days.

How have I been feeling? Not as good as I would like. I still feel side effects from the oxaliplatin, especially cold sensitivity (but not to cold foods). The warm Caribbean water gave me goose bumps, but fortunately, we had bought a wet suit for me, so I could snorkel without freezing. When I took my cold shower (they don't heat the water at the campground), I was the only one yelping through the cold water as I quickly showered. And the appetite thing really has not improved. My appetite is best in the morning, and diminishes as the day progress. Some days, I can't eat any dinner, although I did discover that baked potatoes sit well. I thought my appetite would return this long after my last infusion, and I could regain some of the weight I've lost. One fun thing about being in the Caribbean is that it was easy to buy Ginger Beer (non-alcoholic), which was zingy and gingery, and tastes like the ginger drink that Tia described how to make in a comment a few posts back. Yummy!

This Friday, I go for my next infusion, and I've had conversations with the oncology nurse, and others about the side effects I'm still feeling. I just hope that means the chemo drugs are still working against the tumors, and that the tumors have not taken advantage of this vacation to grow!

So, pictures and more information soon. For now, back to work!

I Didn't Know I was Worried . . .

2007-03-08T21:40:00.000-05:00

This really is my last post before we depart for vacation. Honest!

I finally talked with my doctors today, and after talking with the urologist, Dr. D, I realized I was worried about the stent keeping things flowing between my kidney and bladder. Yes, Dr. M told me Monday that the kidney looked better, and I thought the kidney looked better, but it still didn't look normal, and I knew from the urologist that if this stent didn't work, the next step would be more drastic. They would create a stent in my back into the kidney, and the urine would drain into a bag, completely bypassing the ureter and bladder (for that kidney, but not the other one). I really don't want that kind of stent! I would do it if it meant keeping the kidney, but I really don't want it . . . It's not as if this stent is great. Sometimes I feel it, and it's uncomfortable. But if it's working, that's good.

So, when Dr. D looked at the scan today and said the kidney looked better, despite the failure of the urine to drain completely, I was relieved. He also said that when the stent is replaced (which they plan to do each three months), he could put one in with a slightly larger diameter, to help drainage. He had a plan, he wasn't worried, and I was relieved.

Later today, I talked with the oncologist, Dr. J. He listened to my story of side effects, and proposed that we cut the dose of both of the chemo drugs. He suggested we try that before going with a port. "Why have the additional procedure if you don't need it, and the lower dose gives you fewer side effects?" he asked. I had to agree that fewer procedures sounded good. So, a lower dose of the oxaliplatin to help with the exhaustion, funny numbness in the back of my throat, and tight muscles in my calves that I experienced last time. A lower dose of the Xeloda to help avoid hand-foot syndrome. I'll go for my next chemo treatment on the Friday after we get back.

For now, I'm on a chemo holiday, and feeling more like myself with each day that passes. Yea! You all have wished me bon voyage, and have a great trip many times over, and I appreciate that. I did think, while meditating this morning, that I also wanted to ask for continued prayers and healing energy. Please don't stop! I feel the support, and the prayers, and the positive energy, and it sustains and nourishes me when things are tough.

That's it for now!

In The Chemo Room

2007-03-07T14:01:00.000-05:00

I have been drafting this post since my last chemotherapy, almost three weeks ago. Before I head off for this much-anticipated vacation, I figure I should post it. When we return, I'll be anticipating another round of chemo, and the information will likely change. So, for those of you wondering if I haven't left yet, the answer is "not yet," but in two days. And thanks for all of the warm wishes and good thoughts following my last post.

Some of you reading this blog know more about receiving chemo treatments than I do, but lots of you who know me have asked me questions about receiving chemo, what it's like, what happens, what the two different chemos are like, etc. So, I thought I would share a few of the details I've observed and experience in my two rounds. Those of you who have been there, feel free to comment on your own experiences!

In addition, I'm remembering that Leroy (of Leroy's blog at NPR) was interviewed and filmed in the chemo room for a special scheduled to appear this spring on TV. Last December, he had a fellow journalist write in his blog about her observations in the Chemo Room, and those are worth reading if you have no prior experience. The documentary will be on Discovery Channel, and whenever it will be, I should get a heads-up from Leroy's blog, and I can mention its air date when I learn of it.

The Chemo Room at Beth Israel Deaconness, where I go for chemo, is a great big room with a nurse's station in the center, and chairs that can recline all around the outside wall. Most of the chairs can be curtained off, if need be, although I haven't felt the need, and so I've been able to observe lots of other folks receiving their chemo treatment who are also not behind curtains. As Elissa Rubin, the journalist mentioned above, notes, folks are dressed in street clothes. I would guess the only reason to be in a hospital jonny would be because you were already admitted to the hospital. Some folks even dress up for the trip to this hospital, reminding me of my favorite aunt, Win, who still loved to dress up and wear a stylish hat when flying on airplanes before she died early in this decade.

The session starts with checking in with the chemo nurse, Linda, and possibly the oncology nurse, Sue, who may come by. This last time I talked with Linda about slowing things down from the first session (where the infusion took about 2 hours), and she agreed. She put the IV in, and gave me decadron IV (anti-nausea med), then benadryl (because I'd had a hive during the first session), and she brings me a pill of anti-nausea med, whose name we can't remember. When it's time to actually begin the infusion of oxaliplatin, the chemo nurse and one other person come together to confirm the dose and medication and that I'm the patient it's designed for. This last session, they did slow down the infusion, and I think it took more like 3 hours. But I think it was still too fast, given how I felt after. But I get ahead of myself.

Patty and I bring along a bag of snacks and things to do, but there are also volunteers coming around offering food. Does that seem strange, that someone would eat during chemo? I thought so, at first, but then found that snacks and a lunch tasted pretty good during the time I was sitting there (having already been pumped with anti-nausea meds). After lunch, they came by offering ice cream, and I remembered readily that eating ice cream would not be a good idea, so both Patty and I declined. I find that I like listening to music with my iPod, sometimes I'll pick up a good book (if i have one), sometimes Patty and I will chat, especially at the beginning. And I watch people, the others in the chemo room with me.

On my last visit to the chemo room, there was one man who seemed to be dozing through his infusion (I was envious - Does that make it go faster?), one woman who came in to receive platelets (they were very yellow, and Patty could read the bag), and another woman who received transfusions, two, of blood, while she was there (the blood was easy to spot from across the room, with the big "O" on the bag). Sitting next to me was a man receiving oxaliplatin also, plus one or two other drugs. He looked like an old hand at this, and had a port in his chest for the infusion. (A port is inserted as day surgery, separate from the chemo, and means that when something needs to be inserted (chemo drugs) or withdrawn (blood), a new IV doesn't need to be started in the arms or hands. Apparently a lot of folks have trouble with their veins, and I have also heard that the port can ease the infusion. Since I had a rough round with infusion #2, I will be learning more about that.)

So what happened during the second infusion? I guess it was just too much, too fast, and somehow my body couldn't tolerate it well. I've already written about how I came home and spent the rest of the day in bed, and also about talking with Sue last week about the possibility of doing some things to make it easier next time.

I still haven't touched base with the oncologist about the next infusion and whether or not to do a port (I'm leaning toward yes), and with the urologist about the stent. But my CT scan pictures did arrive by FedEx yesterday, so I got to see for myself. I could see those funny little plastic loops at either end of the stent, and that my kidney looked less swollen than last time. I feel that I'm heading to vacation feeling about as good about my current state as I can. And after vacation, stay tuned for updates on future chemotherapy!

So Far, So Good - No Sign of Cancer Spread

2007-03-05T19:48:00.000-05:00

This morning was my long-awaited CT scan to see if the tumors are responding to the chemotherapy. Patty came with me, as I'm still feeling less than my usual self following the stomach virus, and a lot of the morning was uneventful . . . banana flavored barium, CT scan, request for DVD of the scan, blood drawn, waiting for the DVD of the scan, only to be told that their DVD burning machine was broken. So, I came home without the pictures, which was frustrating.

But this afternoon, as promised, Dr. M called, with a draft of the radiologist report and his own reading of the scan. The radiologist thinks things look the same; Dr. M thinks the tumor in my abdomen may be slightly smaller. In any event, it's not larger, which suggests that the chemo is having an impact. With gallbladder cancer, it's not unusual for a response to be modest. These drugs were developed for other cancers, and the doctors are just trying them out on those of us with this rare - "exotic" - cancer. Dr. M said that the stent seems to have relieved some of the backup in my kidney, but that the kidney wasn't completely normal.

Of course I would have rather heard that the tumor had vanished, but this is at least modestly good news. And with this news we'll head out of town on Friday, ready for this much anticipated vacation!

Appetite

2007-03-03T03:05:00.000-05:00

Not having had an appetite for much of the last six weeks (chemotherapy), but especially the last three days (stomach virus), I woke up during the night thinking about appetite, and writing a post on the subject. Also, I was talking with Tia last night, and we were commiserating about the lack of appetite, and how hard it is to eat when nothing tastes good.

Where does our appetite come from? Most basically, it's an element essential to human survival, ensuring that we get the food and beverage needed to sustain life. Why does appetite change? Illness, certainly, and as so many of us know, the treatment for cancer known as chemotherapy. With so many of us in the U.S. struggling to keep our weight under control, when faced with a dizzying array of possible, delectable things to eat and drink, it's a bit strange to be thinking about appetite and lack of it. But for those of us with cancer, and those of us undergoing chemotherapy, lack of appetite is very real. It's not just nausea, although that's part of it, it's that even when we eat, things just don't taste that good.

For most of my life, I have loved to eat. I love the smell, texture, taste of food, and I enjoy cooking and baking. My first extended period of detachment from the joy of eating came in 1995 when I contracted dengue fever after a church mission trip to Nicaragua. (At least I assume I had dengue fever, although it was never confirmed by a lab.) Fever, nausea, vomiting, diarrhea, lots of the same symptoms of a stomach virus, but it just didn't quit. I was pretty sick for three weeks, and got better only slowly. As I recovered, I found I was only interested in "white food" - potatoes, pasta, bread, bland food. I would watch others eating, and would remember, distantly, enjoying eating, looking forward to meals. It took a long time for my previous relationship with food to return. My experience with chemotherapy is more like that experience with food and lack of appetite than any other I've had.

In researching this post, I learned that there is a scientific journal called Appetite. The research areas for publication cover a wide range of topics, including "behavioural nutrition and the cultural, sensory, and physiological influences on choices and intakes of foods and drinks. It covers normal and disordered eating and drinking, dietary attitudes and practices and all aspects of the bases of human and animal behaviour toward food." Who knew scientists were interested in all of those things? Clearly, anything I can say on the topic is very limited!

There's also a book about food and eating called Appetite, by Nigel Slater. He reflects on our relationships with food and food preparation, and also seems to include some recipes. I never heard of this book before, but it sounds interesting. However, in the table of contents, there is no mention of "chemotherapy" and appetite. So, that's no help!

So what can those of us on chemotherapy do about our lack of appetite? Doctors can give us anti-nausea meds (and they do), and I guess there are even drugs to stimulate appetite (I heard a doctor prescribing some to the person next to me in the chemo room). But I'd like to stimulate my appetite without drugs, and make sure that I am getting the nutrition I need to support my body's functioning and fight against this cancer that endangers my existence.

One book that specifically focuses on what those with cancer can do about loss of appetite is Return to Wholeness by David Simon. He's an M.D. with an ayurvedic perspective, so he talks about a drink to stimulate appetite (equal parts gingerroot juice, lemon juice, honey, and water with a pinch of black pepper; how do I squeeze juice from gingerroot?), and some natural ayurvedic shakes and soups. I remember reading this section of the book last fall, when my appetite was normal, and thinking I probably wouldn't need his suggestions. Was I ever wrong! Now that I've rediscovered it, I need to try some of his ideas.

I began this post this morning, and now I'm ready to put it on the blog. Over these hours, I've experimented with trying to eat more. I woke up thinking about homemade blueberry muffins, so I made them. They were good, but didn't taste quite right. Then I tried a half-banana, a drinkable yogurt, and some reheated mashed potatoes. (I decided to return to the "white food" approach to diet!) So far, so good. Thanks for reading my ramblings on this topic!

A New Month on the Calendar

2007-03-01T17:48:00.000-05:00

It's March! When the calendar turns to this month, spring is on the way. So what if snow is forecast for tonight, the end of winter is in view! A new month for me also means a new month of surviving, and thriving, despite the cancer and the chemotherapy. Last weekend I officially passed 9 months since diagnosis. Last summer, after my diagnosis of gallbladder cancer, I was hoping I'd live to see another spring, but I had no idea what state I'd be in when spring arrived.

This last day has left me dealing with more mundane health issues. I have a stomach virus, most likely the norovirus. Nausea, vomiting, diarrhea, the whole picture. The "good" news, in a mixed up way, is that Patty got it first, a few nights ago, so when it happened to me, I didn't think it was a side effect of the chemo. I just assumed I had a stomach virus. Even the Boston Globe had an article today about how widespread the virus is in the area.

For those of you who worry about me, yes, I am staying hydrated. Lots of flat gingerale, and a little chicken broth, a few crackers, half a banana, some water. And yes, I did call the oncology nurse today to touch base with her about how I was feeling and what I should do. She told me not to worry about lingering symptoms unless they continue into tomorrow. I've spent the day in bed, warm and snuggly, napping, reading, napping some more. And visiting the bathroom a lot.

So, it's a new month, and a week from tomorrow we get into an airplane to fly to St. Thomas, USVI, and then a ferry to St. John for 10 days. Every bright day with blue skies reminds me of the warm, sunny weather there, and all of the sunshine oriented things we will be doing. Every cell in my body is eager to soak up the warmth and the Vitamin D (except you bad cancer cells; no warmth or vitamins for you!) I guess it's pretty clear that I'm really, really looking forward to this vacation.

Off Chemo for Now

2007-02-28T12:50:00.000-05:00

Yesterday, I talked with the oncology nurse, Sue, about my very hot and sore feet. She told me to go off the Xeloda. (I know from the discussion boards that folks can end up with very painful sores on hands and feet with Hand-Foot Syndrome, and I guess she was trying to help me avoid getting worse. If you read this link to more information, you see that what is happening is that the drug is leaking out the capillaries in my feet and irritating them and the surrounding tissue. Weird.)

So, I'm mostly relieved, and a little anxious about the impact on my tumor. But I am pleased to begin de-toxing from the drugs three days early. Already this morning, my feet felt a little less hot and a little less sore. I'm working at home today to give them a break, and plan to be back on campus tomorrow.

Sue and I also talked about how hard the last oxaliplatin infusion was, and I told her I want to do some things to make it easier next time. I told her what had happened, and she commented, "So, you toughed it out." I guess she's right, I did. I just wanted the infusion to be done, so I didn't have them stop earlier or slow it down. Anyway, they can infuse first with calcium and magnesium (I think that's the combination), and that seems to improve the tolerance for the drug. To ease the pain in the arm being infused, they can put in a port in my chest, so that the drugs are going directly into a large vein, not a small one. She said - and I've read - that the port can make a difference.

So, this coming Monday I go for the CT scan, and we see what's inside. I'm hopeful and optimistic that there's some good news there, although this is indeed an unpredictable journey.

To all of you who wrote about "Make no comparisons," I do indeed find it easier to ignore the opinions of others since turning 50 and settling into maturity. But even from that easier place, there are moments of falling back into that old place. Thanks for your sharing and your cheerleading!

"Make No Comparisons" - Brugh Joy's Spiritual Lesson #1

2007-02-26T12:27:00.000-05:00

Since my post of Feb. 20, I've been thinking about how I couldn't stop comparing myself to others, knowing that other people on chemo have a hard time, or an even harder time than I am. It brought to mind some spiritual lessons I keep learning over and over again. I know it's human to compare our experience to others, but it's not always that helpful.

When I was taking workshops with W. Brugh Joy, I read his book Joy's Way: A Map for the Transformational Journey. An Introduction to the Potentials for Healing with Body Energies. In the third chapter of the book, Brugh describes a cosmic experience of a woman who came to talk with him about her challenges in life. A few months earlier, she had been walking along a beach, saw an iridescent light, and heard a booming voice deliver three injunctions. She thought she was going mad. The voice said, slowly and repetitively, "'There are three injunctions for you. Pay attention to them. Make no comparisons; make no comparisons. Make no judgments; make no judgments. Delete your need to understand; delete your need to understand.'" (p. 59)

Today I want to share some of my thoughts about the first injunction: Make no comparisons. Like many spiritual lessons, I feel that I have been learning and relearning this lesson for decades. My comparing myself to others on chemotherapy is an example. I feel that the reality is that my task, my spiritual work right now, is to be present to my experience and to see what it has to teach me. I can empathize with the experience of others, but making comparisons is not useful (human, but not useful).

In his book, Brugh makes a few useful points about this injunction. He says "The tendency to live in ideas about reality isolates the mind from the true reality of the physical level . . . self is - the self is true, without question - but ideas about self may be true or false, . . . If the individual insists on holding on to ideas rather than harmonizing with what is, pain must follow." In these words, I hear him saying that believing things about ourselves, in comparison to others, isolates us from the truth about our self. I hope I'm not making this too ponderous, because it's a lesson that has really served me.

For some of us, perhaps many of us, this comparison comes in looking at our physical attributes and judging them as wanting in comparison to friends, family, societal ideals, etc. Brugh gives an example of this for himself in his book by talking about his dissatisfaction with his physical appearance for years. I was doing this in a small way when I felt overdressed for the weather on Feb. 20, and didn't like what I saw was the way others were seeing me. For much of my life, I have judged my physical body by cultural standards and found it wanting. Now that the calendar year says I will turn 60 if I live until my June birthday, I can get caught less in that, but it's still there. Last fall, I saw an old friend whom I hadn't seen in perhaps 20 years, and a mutual friend commented back to me that she thought I looked old. Well, we are the same age, but I have let my hair turn gray. I haven't completely accepted my aging body, but I do recognize that making comparisons with younger bodies accomplishes nothing. Aging is something we baby boomers don't always do gracefully, I fear.

On a spiritual level, making comparisons can mean seeing others as more spiritually evolved than we are, and feeling hopeless to achieve what someone else has achieved. For me, with my gallbladder cancer diagnosis, there is this desire not to be facing the challenges I have. I want to live a longer life, I want to see my kids grow up, I even want a less serious cancer if I have to have cancer. But none of that wishing changes the reality. Can I give up those comparisons to the life I wish I had to, to the life others have, to allow myself to benefit from the life I do have?

Toward the end of the section on this injunction, Brugh adds "It is especially important that one not interpret the injunction against making comparisons as an exhortation to live in a state of complacency, where everything that the outer mind sees is rationalized as being perfect or right, without need for change. Complacency is the way of the ignorant." I've never thought of this spiritual lesson as encouragement to accept everything the way it is, without question or concern, but I can see how it could be read that way.

Make no comparisons. Be true to oneself, and be willing to look under the rocks of consciousness to see what is hidden from awareness. Under those rocks lie the possibility of transformation, of true change that allows us to fully unfold into the person, the spiritual person, we were meant to be, we were created to be.

On another day, I'll add Brugh's thoughts - and my own - about the other two injunctions.

Today is a pretty good day for me in Chemo World, as I grade some papers, make up a midterm, and try to stay off my feet with their "hot spots." Three and a half days remaining in this cycle of chemo . . .

Six Cell Rules Broken by Cancer

2007-02-25T20:00:00.000-05:00

How do cancer cells do their thing? Why are they so dangerous? Why can there be cancer in essentially each organ of our bodies? What makes them break the rules of cell existence? I have no answers to any of those questions, and as far as I can tell, the scientists don't know a whole lot more than I do about the origins of cancer. But, since I was diagnosed with gallbladder cancer, I have been trying to acquire a real layperson's understanding of the disease. I just read an article that helped me (although, goodness knows, I didn't understand all of it). Mostly, I really, really learned a lot from a small side box to the article entitled "Hallmarks of Cancer."

The article is in the March, 2007 edition of Scientific American, and it's entitled "Mapping the Cancer Genome," about efforts to begin mapping the genes involved with cancer as a way of learning more about the disease in general, and hopefully, ways to treat it. The project is called the Cancer Genome Atlas Project, and the plan is for it to follow the pattern established by the Human Genome Project, which completed mapping of the human genes about three years ago.

But the sidebar talks about the SIX rules of cell existence that are broken by cancer cells! How do they get away with it? Why don't our natural defenses step in after step 1, or 4, or 6 is broken? In the article itself, the author comments that "Some mutations may disable genes that normally protect against abnormal cell behavior, whereas others increase the activity of disruptive genes. Most cells must acquire at least several of these alterations before they become transformed into cancer cells - a process that can take years." (p. 52)

The sidebar begins by commenting the six abnormal capabilities listed below together give tumors their lethal power to overrun their native tissue and spread through the body.

Here are the Six Cell Rules Broken by Cancer:

1. "Self-sufficiency in growth signaling. Cancer cells amplify external growth cues or generate their own."

2. "Insensitivity to antigrowth signals. Cancer cells become deaf to quiescence cues from surrounding tissue." (I'm a little fuzzy about this one, but I think it means that cells signal each other that it's time to grow or time to stop growing, but cancer cells don't listen to the "stop growing" message.

3. "Evasion of Cell Suicide. Mechanisms that should trigger or carry out a self-destruct program in damaged cells are disabled or overriden." (This is the apoptosis I've been writing about for months.)

4. "Limitless replicative potential. Cancer cells evade intrinsic limits on the number of times a normal cell can divide."

5. "Sustained blood vessel growth. Tumors emit signals promoting the development of new blood vessels to deliver oxygen and nutrients." (This is why one of the most promising new anticancer drugs, Avastin, is in trials for most/many cancers. It was included in the clinical trial originally proposed to me last summer, and I may still add it to the regimen.)

6. "Invasiveness and motility. Cancer cells defy multiple signals and forces that hold a cell in place and prevent it from traveling to - and thriving in - other tissues." (This is the metastasis that is so dangerous to those of us with cancer, where the cells wander about the body until they find a spot to settle, divide, and grow, and become a danger to this new organ.)

Anyone reading this with more knowledge of biochemistry and these statements, please feel free to chime in!

So, today is Day 10 of this cycle, and I felt really, really tired and sleepy earlier in the day, but have felt better as the day went on. I told folks at church I felt "floppy." Now I'm not peppy, but better. I was nauseous a lot yesterday, and had better appetite today. Now I'm on the downward slope of this cycle, and hoping that each day is better than the one before. Twelve days until we leave for St. John! Yeah for sunshine and swimming!

Good News on the Chemo Front

2007-02-23T18:51:00.000-05:00

What a delight your comments have been to my post yesterday about oxalis and oxaliplatin! Mikebel, I don't know you, and don't have any way of contacting you, but I really appreciate the information about oxalic acid, and how oxaliplatin was developed. I didn't know any of that, and I love information! I also love rhubarb, but I'd rather eat it, even without sweetener, than have infusions with oxaliplatin! And I think I'll pass on the spin in the washer with the oxalic acid, Jan, but I get that it's a serious chemical!

So, without wanting to get too excited, I have two reports on the chemo front.

The first is that the "spot" in my abdomen (actually "spot #2" since the first one was removed), is noticeably smaller than it was in January when I had my last scan. It's still there, it's round and hard, but it no longer feels like the tumor that wants to gobble up my insides, or grow to be a grapefruit. Of course, I won't know anything about the more dangerous tumor that's inside my abdomen, out of reach, and endangering some of my internal organs until I have the scan on March 5. Still, it makes sense that if my "spot" is shrinking, so is that nasty tumor inside! So, this gives me optimism that my fight against the tumors is having success! (And after some of the tough days this past week, that's especially good . . . ) Since the surgical oncologist, Dr. M, had mentioned that this might be a reason to keep this "spot," I'm appreciating his suggestion. I can't believe I can actually feel a change in it!

The other report is more anecdotal, me making up a story again. I have acne rosacea on my face, across my nose, and it is an annoying skin condition that produces ugly red spots and blemishes. I have topical medicine for it (metrogel), which may be keeping it from getting worse, but mostly hasn't seemed to do much. However, I've noticed in the last two weeks that my skin is peeling around my nose, and my red spots seem to be slowly clearing up. So, I've decided (here's my story) that it's the chemo, which targets fast growing cells in the body, that has attacked my rosacea and made it much less problematic. (I still say that once a person is in her 50s, she should not have problems with acne of any variety, but this ailment has not listened to my complaints.) Imagine! The chemo may have cleared up my skin!

So, I've felt tired but good today except for my appetite, which is in the pits. I kept thinking about milkshakes, so I finally made one this evening, and have to drink it in very slow sips to warm it in my mouth, but I feel like I'm breaking some rule in a fun way! The thing is, I will have to find something resembling dinner also, because I have to take my Xeloda tonight after dinner. Otherwise, I'd probably just pass on dinner altogether . . .

Thank you again for all of the responses, which make me smile every time I think about them. I so appreciate feeling that we are in an extended, long distance conversation in writing . . .

Oxaliplatin & Oxalis - Day 7 of this cycle

2007-02-22T19:59:00.000-05:00

Now that I'm a week past my oxaliplatin infusion, I'm feeling better. That is one intense drug! I think one of the reasons the water has tasted so bad has been that the drug messes with my electrolyte balance, and makes many things taste funky. Thanks to the many folks who wrote with suggestions about what warm beverages to drink. Some of them I hadn't thought of! I appreciate the support and the thoughtfulness of your suggestions.

But this post is about flowers, of the family Oxalis, with two of them pictured here. From the beginning, I've been struck by the similarity between the beginning of these two words, oxaliplatin, the chemo drug I'm infused with, and oxalis, which is a lovely flower with three lobed leaves. I've occasionally grown oxalis, as a house plant (they are often sold as "shamrocks" in March, with their three-lobed leaves), but even that's not the story I want to tell. I just tried to look up the origin of the word oxaliplatin, and got nowhere. I do know that it's a "platinum" drug, so that explains the end of its name. I don't know about its beginning. So, here's my oxalis story.

When I was 10 and in fifth grade, I participated in the New Jersey State Grange Spelling Bee. Spelling has always come easily to me, and I had won for my school, and went to the state capital, Trenton, for the state spelling bee. "Way back then," in the 1950s, we didn't prepare as intensively as kids do for state spelling bees (if Akeelah and the Bee is any indication), but I think I did some practicing before going. As the spelling bee went on, I was doing very well. Then there were just two of us left standing on stage. My next word? Oxalis, except that the person reading the words pronounced it "oxy-lis." I asked for a definition, learned that it was a flower/plant, asked for it to be repeated (and wished later I'd asked for alternative pronounciations). With the pronunciation, it sounded most like oxygen, so I went with o-x-y-l-i-s. As you already know, I was wrong. The one contestant still standing spelled her word correctly, and won the state championship.

I was happy to win second place in the state, and to get my picture in the paper. When they asked me to say something, I said it was good that people would now finally hear of "Vincentown," the tiny town in NJ where my family was living. I didn't like being from someplace no one had ever heard of. Aren't ten year olds amazing? Like my getting second place was really going to make a difference! Anyway, I always like telling that story, and I'm pleased I did so well, and I've been fascinated by the flower oxalis ever since. And I wouldn't misspell it again, that's for sure! Lucy is a good speller, too, and it's been fun sharing this story with her as she has worked her way through increasingly difficult words.

So, there's probably no connection between this intense chemotherapy drug and these sweet little flowers. But I have better associations with the drug if I think of the flowers. Tomorrow begins Week 2 of this cycle. I'm hoping for increasingly less cold sensitivity, and increasingly more appetite and that food and beverages will taste better.

Today, I Haven't Felt Healthy

2007-02-20T20:18:00.000-05:00

This is about chemo side effects. I don't think my essential health has changed (although I'm hoping that the tumors are being eaten up by the chemo), but I had a rough day today. As I start to write this, I worry about whining, but I also want to share some of this, because I know I'm not alone in experiencing side effects from the chemo.

The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!

In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.

The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?

(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)

The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.

[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]

All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.

The Robin in My Backyard

2007-02-19T13:01:00.000-05:00

Like many folks who have grown up in the Northeast, I have come to see robins as a first sign of spring, as they return from wintering over somewhere warmer and farther south.

This year, I have a robin in my yard that's never left! I like to make up stories about things, so the story I've made up about this robin ("my" robin) in my thinking is that it was lured to stick around this winter when the winter began so mild. I swear I remember seeing it catch worms in the yard up to mid-January, before the weather turned suddenly and deeply wintry. At first, I worried about what she was eating (Yes, in my mind, she's a "she;" see how I make up stories?), and then I noticed that the berries on the dogwood tree in the side yard were slowly disappearing. Next, she discovered the holly bush in the front yard, full of berries, and she would even sing her tuneless robin song from the front yard, as if she had discovered a great treasure. Now, I don't know of any remaining berries in my yard (although she might), but I see her almost every morning at my water garden.

So, here's a photo of my water garden in winter; no robin; she's too smart to stick around when we (or the yard cats) are outside. In order to allow exchange of oxygen/carbon dioxide for the fish in the water garden, I put in a floating water heater. It keeps the ice from freezing the entire surface of the water, and, in addition to keeping my fish (and any bullfrogs wintering over down in the leaves) alive, it provides fresh liquid water for the birds, and cats, other wildlife, and for my robin. And even for a stray bluebird (formally known as an Eastern bluebird).

A few weeks ago, I saw a bluebird at the water garden, and wondered what it was doing this far north when it's so cold. I don't see bluebirds in my yard in the summer, so I was especially surprised to see her there. My friend Richard, who has bluebird houses and loves them, too, showed me a picture in a bird book of about 10 bluebirds tightly packed in a bluebird house in the winter. The book also said that bluebirds stop eating insects in winter and switch to berries. So then I added to "my story" about "my robin," and figured that, like bluebirds, she has shifted from her usual diet of earthworms to berries.

Okay, I know this has nothing to do with my illness, or my current physical state. So how do I feel today? Pretty good, tolerating the chemo well, eating well. But I'm not going out much with the cold air and my recent infusion of oxaliplatin, so I look out the windows a lot and dream of spring and things growing and turning green again. Even though this robin has stayed for winter, and so is not the typical harbinger of spring, she makes me smile and makes my heart happy. I admire her fortitude, her ability to survive and even thrive in this alien weather. I guess her life-fullness gives me hope, makes me happy. So, I share with you her story.

Credit to Patty for going out on this cold day to take this picture. Thanks, Patty!

Later note: I woke up thinking this morning that not everyone who might read this knows what these birds look and sound like, so I've created links to some websites with photos and bird songs, and some links to water garden pictures - in full summer mode, of course!

Day 2 of Chemo - Feeling Better

2007-02-17T17:43:00.000-05:00

Thanks for the kind words of support, on and off the blog, about yesterday's tough day post-infusion. Now that it's evening of Day 2, I feel I can say that I'm doing better. I still have an incredible sensitivity to any cold, and feel best when I'm sitting on my comfy chair with blankets on my shoulder and lap.

I'm less nauseous than I was last time on Day 2, and I think it's because of the sea bands. So, I've been able to eat, and took my morning Xeloda without a problem.

I finished a great novel today, High Country, by Nevada Barr. Last summer when we were in the southwest, we discovered her mystery novels because they were sold in the national park stores. Her main character, Anna Pidgeon, is a National Park Service ranger, and every adventure takes place in a different national park. She does a wonderful job of conveying the ambiance of the parks - I love a novel that conveys a powerful sense of place - and there's some kind of mystery to be solved in each one of them. This book is set in Yosemite, which we were scheduled to visit last summer, but didn't because of my hospitalization. I wish I had seen it! Anyway, if you are looking for a consistent, good new author of mysteries, I recommend her books. I started this one a few days ago, and read it through the infusion yesterday, last night and today, and now it's done. I only have one or two more of her mysteries to read.

One other medical note. My tumor marker numbers were back yesterday. My CEA, which had climbed to 14 or so, has dropped to 9. My CA 19-9 was about 310 last month, and has climbed to 492. so, we liked the CEA drop, didn't like the CA 19-9 climb, but . . . ? The nurse did comment that it's possible the CA 19-9 was even higher in these weeks before the chemo kicked in, and that it's on the way down.

So, dear friends, know that I am doing well under the circumstances, and especially well in comparison to yesterday. Thank you for your good thoughts and wishes of strength and prayers.

Rough Afternoon & Evening

2007-02-17T09:01:00.000-05:00

It's been almost 24 hours, as I write this, since I got my infusion of oxaliplatin yesterday. It's been a rough day for me physically. I just checked the site meter, and I see folks have been checking in. I'm sure some of you wonder how I'm doing since yesterday's infusion, so I wanted to write a post.

The beginning of the infusion went pretty smoothly, but the last half hour or so left my arm was aching, and when it was time to go, I already had pins and needles in my legs, and some trouble walking. And I felt awful. Dozed most of the way home, hoping I wouldn't throw up (and I didn't), and I went right to bed for a few hours when I did get home.

Last night after a light supper, I started a new round of Xeloda, the chemo I take in pill form after breakfast and dinner.

I slept pretty well last night, although my cold sensitivity means that I need to draw warm tap water in order to drink some water during the night. And I have an ache in my shoulder that may require a visit to the chiropractor. Not feeling as healthy and strong today as I was on Wednesday!

I'll take it easy today. I don't have any place I have to be, and nothing I have to do. Actually, that's not completely true, since I have four more batches of papers to grade this weekend. Still, laying low seems like just the ticket for today. I wish I felt better, though.

Simultaneous Truth

2007-02-14T18:41:00.000-05:00

The title for this post comes from my Spring Hill friend, Thom Herman. He may not have coined the phrase, but he was the first one I heard use it. By "simultaneous truth," he meant that two things that appear to be opposite can both be true. I'm in that place with my diagnosis of gallbladder cancer, I have realized.

The first place is understanding the gravity of my diagnosis of gallbladder cancer, and that the prognosis is not good, and that I've already passed more than one of the potential survival deadlines for the diagnosis. I don't deny that it's serious, and I am doing my best to live fully in the awareness of the diagnosis and its significance for my life. I am doing my very best not to live in denial.

Simultaneously, the second place where I stand with my body, my feelings about my body, and my very serious diagnosis, is that I still feel like a healthy person, intrinsically. Yes, I have cancer, and sometime my body, my gallbladder cells, took a turn for the out of control. But, I still feel strong physically, able to live my daily life and do what needs to be done (at least when I don't run out of steam!). I think this is kind of strange, myself, so I'm not sure how it will seem to those of you reading this, but I was thinking about it today on the long drive up to and back from the hospital and my doctor appointments. (Yes, it was a wet, snowy, slushy, rainy, sleety drive, but we made it up and back safely. And Alice, I trust that you and Lexie did as well!) Part of the sense of my innate health was confirmed today by the fact that my blood work came back good again, with all features in the normal range. (This doesn't include the tumor markers, which will be in in a few days, but it's the "CBC" count.) So, my body has held up well under the chemotherapy. Let's hope those cancer cells have been knocked for a loop!

This also impacts the way I respond when someone else refers to my serious illness, my serious diagnosis. Some part of me is surprised to hear that, and then I remember that I do have a serious diagnosis!

Simultaneous truth. Yes, I have cancer, and yes, my natural strong constitution is holding up well under the assault. I seem to have adjusted to the bypass done around my bile duct last May, to the stent between my kidney and bladder, and now my blood has held up under the chemo. My life goes on.

So, with my good blood work, I'll be going in for an infusion of Oxaliplatin on Friday, and will begin another two week round of Xeloda. Then, in a little more than two weeks, on March 5, I'll go in for a CT scan and we'll see if the stent is properly draining my kidney, and if the tumor has stopped growing or even shrunk. One potentially positive note: We told the oncology nurse that sometimes the "spot" in my side aches in the morning if I've slept on that side, and she said maybe that's because the tumor is breaking down. That would be great news!

Stamina-less!

2007-02-12T19:32:00.000-05:00

This is just a quick check-in to say that those four groups of papers to return to my students are finally graded! I'm so relieved that I can return them tomorrow, as my students need the feedback.

One thing I had to figure out about grading is that my energy is all turned around over the course of the day. I've always been a night person, with lots of energy in the evening - my favorite time of day to grade papers! Since I started chemo, my energy is best in the morning, and slowly seeps away as the day progresses. By evening, I'm wiped, and only good for dinner -maybe - and an hour of TV before falling into bed. The stamina I have relied on so much all my life has just left me.

I talked with Tia tonight. She started chemo last week; Oxaliplatin and Gemzar, one drug the same as mine, one different. We compared symptoms and stories. We are both relieved to be doing really well, all things considered.

Tomorrow is my big teaching day, and Wednesday I get to see my doctors in the midst of a forecast northeaster snowstorm. We'll see if this one is more than a dusting, and how the roads are. I trust we'll make it there and back safely, and so will Alice and Lexie, going to Boston for Lexie's chemo.

Life without stamina. One foot in front of the other, and does bed ever feel good at the end of the day!

Stoic? Not me! . . . more about Feelings

2007-02-11T15:19:00.000-05:00

A few weeks ago, Patty shared with me that several people had commented to her that I was being very stoic about my diagnosis. My first response was that they must be folks who are not reading this blog, since I'm right "out there" about the various feelings I've been having in the months since my diagnosis. And, it seems that they were indeed folks who see me in passing, dropping off the kids at school, or smiling in church.

I see myself as anything but stoic about this diagnosis of gallbladder cancer, and I feel lucky to have learned a lot about feelings and how to feel them and move through them many years before my diagnosis. Not that I have it figured out completely, but I am no longer following my early learned pattern of stuffing feelings and having them come out inappropriately every which way. (At least, I hope that's true!)

My "feelings lessons" came from many years of psychotherapy, and many years of taking and helping to run the Opening the Heart workshop (which I talked about in a post in early December (see Feeling my Anger and other Feelings). We used to give a talk on Saturday morning at the workshop that the staff labeled the "feelings talk." Here are some of the things I learned about feelings that have really helped me get through some of these intensely emotional times in recent months, and especially in the last month. (I can't believe it hasn't yet been one month since the Jan. 22 scan that revealed the cancer had spread, and that a new tumor is threatening my existence.)

These last few weeks have been hard. This past week was hard. I keep forgetting that I had general anesthesia Friday a week ago, although the stent that was placed does regularly remind me it's there. On Wednesday this past week, I felt such intense feelings of sadness and anger about having cancer, having a terminal diagnosis, worrying about whether all of my inner parts are working as they should, or the tumor is threatening their functioning. I went to work and spent most of the day with the door half shut because I would cry, work a little, and then cry some more. I didn't like being in all of those feelings, but they were there, and ignoring them would have felt awful, too. Stoic? Not me.

So what have a learned about feelings? A few things . . .

1. Feelings live in the body. They will be there, part of our human heritage, whether we like them or not.

2. We are not our feelings. When we are mad, sad, or glad, we are having feelings, but we are not the feelings. Given a chance to be expressed, and moved through, feelings will shift.

3. Feelings are neither good nor bad, but in our culture, we have distinct preferences for one set of feelings over another. That's why lots of folks talk about "bad" feelings (as in "I want to avoid bad feelings, like being angry") and "good" feelings ("I want to have happy feelings again.") No, I don't usually like feeling sad or angry. But, if my anger is directed at a behavior that is unacceptable to me, it can be a way of setting a limit. And my sad feelings may hurt my heart, but once I have let them be, they can be released, instead of stuffed into depression or anxiety.

4. When we try to shut down on one set of feelings (like sadness), we dampen our response to the world around us, and limit our range of responsiveness. We used to say at the Opening the Heart workshop that our capacity for joy increases as we allow the depths of our pain to emerge. We limit our range of response by shutting down on the emotions we don't like.

5. When feelings are "stuffed," they will emerge, sometime, somewhere, somehow. They can come out in body symptoms, in depression, in sarcasm and ways of relating that hold others at arm's length because we are afraid of being seen, really being seen. They can come out in other ways, too, but they will definitely come out.

For those of you keeping score on my commitment to grade all four sets of students papers I have home before I teach my next class, I have finished 1 2/3 sets, and have 2 1/3 to go before tomorrow is over. The week ahead is my week without chemo, but I see all of my doctors (oncologist, surgeon, and urologist) this Wednesday, on Valentine's Day. (Will they hand out chocolate hearts?) On Friday, I go in for another infusion of Oxaliplatin, and begin two weeks of the Xeloda pills. But today, no chemo! That feels good.

* The images at the beginning of this post are from Learning and Teaching Scotland, available free if used for educational purposes.

I read Lynne's blog too!

2007-02-10T10:19:00.000-05:00

As all of you do, I read Lynne's blog too. Even though we live together, I too eagerly await a post to hear what's going on in Lynne's mind. We talk a lot about life and love and cancer and work and kids' schedules but sometimes "life" intervenes and we don't finish conversations and so reading her blog helps me get a snapshot of her thoughts that we don't always get to in our day to day conversations. I also await people's comments. I do get some vicarious benefit from knowing all of you are out there offering Lynne kind words, support, laughs, and a space just to be. Lynne's cancer diagnosis, as you can imagine, has been hard for all of us in this family, kids included. Sometime when we are all just hanging out watching "American Idol" and cuddling it is easy to forget that cancer is apart of our life and then in a moment I remember and life seems to come crashing down.

It is hard to hear about Lynne's ever increasing aches and pains related to her cancer growth, hard to hear only because there is nothing I can do about it. I sooooo want to be able to do something to make this all go away. My friend Judy and I talk about searching for a magic wand (or perhaps more realistically, a magic pill) that can somehow make Lynne well. We haven't found it yet. Instead, we take it a day at a time. I try to balance the needs of Lucy and Nathaniel, stay fully present to Lynne, have a sermon each Sunday (as well as tend to other church needs)- but most days I just want to take a nap.

I guess I just wanted to say ... I am here, I love Lynne with a passion I never thought possible and this whole situation is breaking my heart.

Musings, Mary Oliver, and Chemo Brain

2007-02-08T19:05:00.000-05:00

Patty tells me that a lot of folks have logged on today for 20 seconds or so, to see if I've made a new post, so it must be time for one. Thanks to all of you who responded to my last post; I knew that some of you were reading, and some of you are "new, online friends," and it's good to hear your voice (as it were, on the web).

I'm done traveling to Boston for this week, and I'm so relieved about that. We're having a prolonged cold spell - don't think the temperature has risen to freezing all week - and getting dressed and walking outside takes a lot of time, effort and focus! And I only have so much focus to give!

I haven't had energy to grade papers all week, so I'm way behind (and I apologized to all of my classes about it this week). Grading is number one on my list of things to do this weekend. I got home about an hour ago, and Patty made me poached eggs (my stomach was rocky today), and a little later, I was looking for the tote bag with papers to grade, and convinced myself I'd left them on the commuter train. I was so mad at myself! A few minutes later I wandered in by my favorite chair, to find the bag sitting there, waiting for me. In half an hour, I had completely forgotten I'd brought the bag in and set it down. Chemo brain!

One more day of Xeloda in this cycle, and then I have a week off. Aside from fatigue and a sometimes rocky stomach, I haven't had any real side effects. And I'm grateful for that . . . I've read lots of horror stories about tough times folks have had with the same chemo regimen I'm on.

I've been too tired to grade papers on the train, as I typically do, so I've listened to a lot of the songs, poems, and readings on my iPod (Christmas present!) The other day I heard a poem by my favorite contemporary poet, Mary Oliver. Much of her poetry is grounded in her observations of the natural world in a poignant, unique way. This poem is bittersweet and beautiful and evocative, so I'll share the last few stanzas here. Entitled "Peonies," the poem begins by describing, in detail, the sight of peonies opening in the spring from tight green buds to fragrant, colorful flowers. She concludes:

"...Do you love this world?
Do you cherish your humble and silky life?
Do you adore the green grass, with its terror beneath?

Do you also hurry, half-dressed and barefoot, into the garden,
and softly,
and exclaiming of their dearness,
fill your arms with the white and pink flowers,

with their honeyed heaviness, their lush trembling,
their eagerness
to be wild and perfect for a moment, before they are
nothing, forever?"

from her book New and Selected Poems, Vol. One

Do you love this world? I do, and that line has stayed with me all week.

It's Okay to Laugh . . . and to Just say "Hi"

2007-02-05T17:34:00.000-05:00

Yesterday after church, my friend Jackie said that she'd been reading my blog, and found herself laughing (especially at the post about my cold sensitivity after the Oxaliplatin infusion). Then she backed up as if to apologize, as if laughing at something I've written is somehow not taking my diagnosis seriously. "Good grief," I said, "I want to be funny sometimes, and if you find it that way, good!" Many of you reading this blog only know me through these written words, and perhaps I do come across as serious; when I'm speaking, I have trouble being funny or making jokes, because folks do take me very seriously. I do have a dry sense of humor, so when I see what's funny in this unfunny situation, I try to make the most of it. Please laugh! And tell me any funny stories you have about Cancer World!

The photo I posted here is of our family at Arches National Park last summer, laughing. A stranger took this picture; we found many strangers who offered, or agreed to take our picture while we were traveling. As we posed, Patty would say, "Think Christmas card!" and I would add "No pressure!" I think it was at this point that we all began to laugh. And, we did select this photo for our Christmas card in December.

About saying "Hi," I want to speak to all of you who have not responded to the blog, and who haven't even sent me an email on the side. It really is okay to just say "Hi" after you've read a post; it's not necessary to have something profound to say. If you look on the right side of the blog page, just below my photo, you'll see a little box that says "site meter." I added this feature last month to get a sense of how many people are reading my blog; check it out! It's not a secret.

Today, the meter says that I am averaging 91 views per day. That's a lot! Now, I'm not saying you should "check in" every time you read the blog, or that you have an obligation to let me know you have visited. I just want to say that I'd like to have a better sense of who is reading the blog, and what your responses and experiences are. So, remember, it's okay to just say "hi" in the comment section. (And you can post as "anonymous" and just sign your first name, and not go through any fancy process with blogspot.)

Finally, I want to say that I continue to tolerate the chemo well, and the "sea bands" (see yesterday's post) seem to taking away my unsettled gut feeling and leaving me open for a better appetite. I am still recovering in the nether regions from the stent placement on Friday, but I trust that it will settle down, too. The urologist said he had trouble getting past the place where the ureter was blocked, so I'm really, really glad the procedure is done, and the path of the tumor is blocked instead of the urine.

Today is February 5. In one month and 4 days, my family and I leave for our Caribbean vacation. Sunshine, snorkeling, swimming, and just laying in the sun! Can't wait.

Living with the contradictions of chemotherapy

2007-02-04T07:43:00.000-05:00

It's now Day 10 of my chemo cycle, and I wanted to write more about being on chemo. If you, the reader, have ever been on chemo, this may not be that interesting, but I know lots of folks reading this blog aren't on it now, never have been, and hopefully never will need to be, so I thought my observations could describe my experience more concretely,and give a sense of the experience.

First, every chemo regimen is different. Even for the few of us with gallbladder cancer, doctors will frequently prescribe a different combination of drugs. And, sometimes we start with one regimen and, either it doesn't work to slow/kill the tumor, or the side effects become too great, and we have to stop and start something different.

I am on a 21-day chemo cycle. On Day 1, I am infused with Oxaliplatin. That same day, I begin taking pills of Xeloda, within half an hour of eating breakfast and dinner. I'll take those pills for two weeks, and then I have a week with no chemo, time for the "good cells" to rest and recuperate before we begin the cycle all over again. And I have taken my pills as scheduled, even when I didn't feel much like eating, but knew that I needed to eat breakfast or dinner so that I could take the chemo pills on a full stomach, on schedule. Interestingly, after I first drafted this post, I read in today's Boston Globe that taking pills at home is changing the nature of cancer treatment, and the doctors are trying to figure out how to ensure that all patients take all of the medicine prescribed.

The job of the chemotherapy drugs is to kill cancer cells (because, remember, they don't seem to "know how" to die all by themselves, like regular cells - apoptosis!) Chemo drugs are strong and tend to have side effects, but not everyone gets all of the side effects.

So here's the contradiction of my chemo:

1. I can't drink cold beverages or eat cold food, or expose my body to cold air for 2-7 days (or maybe longer) after the Oxaliplatin infusion. Simultaneously, I cannot get my hands or feet in hot water (no washing dishes in wash water, not even with rubber gloves, which leaves the hands too hot). The "moderation" of temperature required by this regimen reminds me of how my father likes to encourage moderation in all things (all my life, he's encouraged me to remember this).

2. Either of the drugs may make me nauseous, the Oxaliplatin especially right after the infusion, and the Xeloda anytime. Or not. So, I continue to take the compazine - mostly at night - if I'm feeling nauseous, but if I take it during the day, it makes me sleepy and fuzzy brained. And, I'm happy to say (knock wood) that so far, my nausea has been mild, and has been the only clear GI tract effect of the chemo. And I just bought some "sea bands," at my local drugstore. They used acupuncture/acupressure concepts, and fit tightly on my wrist with a small hard bead pressing in on the naseau "point" in my wrists. So far, so good today. (The photos at the top are from the seabands website.)

3. There is no positive correlation between having side effects and whether or not the drug is working. The drugs can work without side effects (and this is the option I'm envisioning!)

4. In order not to develop two fairly common side effects from the Xeloda, the time required for my personal hygiene has just grown by a lot. First, I'm supposed to cream my hands and feet several times daily to keep them moist. At the hospital, they even gave me a free sample of "Udderly Smooth," which turns out to be a lovely cream both for cow udders and people's hands and feet. This extra care is to prevent "hand-foot syndrome," where the skin breaks out in a rash, blisters, etc., and which can be pretty painful.

5. The other common side effect from Xeloda is sore mouth - stomatitis. So, I'm not only brushing my teeth twice a day, as usual, I'm also rinsing with baking soda dissolved in water a few times each day (keeps the bacteria count in our mouths down). And I'm flossing (almost) daily, just as the dentist always recommends! I guess I'm less likely to develop the sores if my mouth is extra clean. Today I notice that the roof of my mouth feels tender, so I'm trying to eat food that won't scrape the insides of my mouth. I'm hoping for great success at avoiding this side effect, but I figure that there just aren't any guarantees.

A quick visit to my world of contradictions in chemotherapy! Up is down, cold is hot, and side effects can stay home . . .

Stent Surgery Successful

2007-02-02T19:04:00.000-05:00

As scheduled, I had my day surgery - with general anesthesia - to insert a stent between my kidney and bladder. Things went pretty much as scheduled, time wise and surgery wise. We'll be sure that the stent is doing its job and keeping the urine flowing from my right kidney when I go in for my next CT scan (still quite a few weeks away).

I'm trusting that it was successful, and that things will keep flowing!

Yesterday, I discovered the limits of my energy with a long day that left me wiped out and feeling crummy. I had felt well all day , and so I taught my classes, went for my pre-op appointment, took the commuter rail home, went to the drugstore for a prescription for a scopalamine patch (to reduce nausea and vomiting following the surgery), stopped at the supermarket, and came home exhausted. Did too much. So now I know there are limits to my energy, and I need to be careful about pushing them! Still, I did feel good early in the last 3 days, and have felt that I am tolerating the chemo well.

Today is Day 8 of this chemo cycle, and I did miss this morning's dose because I couldn't eat the morning of the surgery. Back to the Zeloda pills tonight, though.

That's my news for today. I'm going to take it easy tonight, doze my way through Friday night TV probably, and trust that tomorrow I'll feel great again.

Why Keep Working?

2007-01-31T20:02:00.000-05:00

No one has actually asked me this question, although perhaps folks have wondered to themselves, or asked each other. With my serious diagnosis of gallbladder cancer, stage IV, and now the new tumor and chemotherapy, why keep working? My good friend Bev was talking about my diagnosis with some friends of hers who are around "our age" (60 or pushing thereabouts), and they wondered why I wasn't traveling the world, or doing something similarly exotic. Instead, I had to get "exotic" cancer!

There are the children and their schooling, although they could learn anywhere. There are a variety of answers to this question, and I'm sure I'm not going to think of all of them today. But the question, and my answers, have been in my mind, and I want to share them. I think my reasons carry varied weight at different moments. And I want to be clear that if I am too sick to work, I will certainly stop. I'm not a martyr, and folks at my work have been wonderfully supportive of me through my health challenges over the last 8 months and 1 week.

Why keep working? In no particular order . . .

*** Financial reasons. My income is a significant source of income for our family, and, almost as important, my work is the place providing my health insurance, which is wonderfully comprehensive. I think about someone struggling with a diagnosis like mine, and having financial problems and no health insurance to pay for doctor visits, medical examinations, chemotherapy, tests, all of the things that have become part of my life in these months. I wouldn't choose voluntarily to put my family in that position if I could help it. If I have to stop working, we'll figure it out, but . . . money and health insurance are important.

***Because I can. As long as I'm well enough to work, why not? I love what I do, have worked hard to get good at it, and appreciate the relationships I form with students, colleagues, and the larger university community, and I also appreciate the opportunity for intellectual stimulation.

***Generative expression. This phrase comes from psychoanalyst Erik Erikson, who envisioned eight stages over the life cycle, and the 7th is "generativity versus stagnation." He saw this as the main stage of mature adulthood, where (as I remember) one has the opportunity to be productive, as by using the education gained in childhood and young adulthood to develop a profession or career, and be a useful member of society. I'm getting a little long-winded here (me?), but this is the word that keeps coming to me. I want to be useful, I want to be productive, I want to have the normalcy that comes from continuing to work. I have no illusions about being indispensable; I know that I'm not. But, I am useful, I do know a lot about how my job works, and I value the opportunity to continue to share that.

***Something to focus on besides my body. I don't want to be so obsessed with every twinge and tweak in my body that I go nutty. With work to think about, I am taken out of my self- focus, and given other things to think about. Yes, my health is important, and I am doing my best to balance all of this, but work is part of the balance for me. Take it away, and I may become too focused on bodily functions and processes! And yes, I like to think that I'll know when the time comes to leave work behind and focus more exclusively on intimate relationships and my spiritual self, and to leave work behind. I don't think that time is now (and I recognize that my body could have a different agenda). Expectancy, and hope, not expectations.

A postscript to all of this is that I had a good day today. By late afternoon, I commented to Patty that I'm feeling good (and almost afraid to say so, in that superstitious way we humans can have). I feel more myself, my energy has been strong, and I feel more like the person I was before I began chemo. And, I confess, I stayed home to work today instead of going to the city, but I don't think it's just about that. I seem to be managing the nausea I occasionally feel, I'm getting used to "pins and needles" (and they are slowly subsiding), and I'm taking care of mouth, hands and feet against possible side effects (more on that in another post).

Today was a good day. I celebrate that. Tomorrow I return to the city to teach my classes, and I celebrate that as well.

Thanks to all of you who have been posting and sending me hope, love, support, and all sorts of good things. I so value your sharing this journey with me. Thank you.

Hope and a Christmas Rose

2007-01-29T20:48:00.000-05:00

I looked over the last few blogs and decided that there were too many words, not enough pictures. Too much serious stuff.

So, here's a photograph of a Christmas Rose that's growing, right now, in my winter garden. (The link here is to someone else's Christmas Rose, so you can see what they look like open.) No, it's not really a rose, but that's what it's called, and it blooms in the winter, perhaps at Christmas. Years ago I read a short story about a Christmas Rose blooming in a garden in England, but I don't remember anything else about the story. Just that the flower bloomed in winter, and I was fascinated. I assumed it was a "real" rose, but as you can see from the picture, a Christmas Rose looks different, and I just learned that its Latin name is Helleborus Niger. If the flowers aren't too frozen by our cold winter, they will open (like the one on the website linked above) and have a pink hue. Next to my Christmas Rose is a Lenten Rose, which has dusty pink buds already coming up, but which blooms later in the winter, closer to Easter.

Why does any of this matter? To me, watching something grow, especially grow in the cold, bitter days of winter, is a sign of hope, a reminder about living things, things growing and surviving and thriving even in harsh circumstances. Like life continuing despite cancer.

So, I'm thinking about hope and my Christmas Rose today, four days from the beginning of my chemo treatment. I'm feeling good today, and tomorrow I go back to campus to teach my classes, third week of the semester. What speaks of hope to you?

Chemo, Day 3

2007-01-28T21:14:00.000-05:00

This is just a quick post to let all of you know that I'm doing fine, just tired. I'm still having some cold sensitivity, but the house is warmer, and so is the outside world. I haven't been nauseous, but I've been consistent in taking the anti-nausea medicine, and eating regular meals. I felt in a bit of chemo fog this morning, but that passed.

My most unexpected side effect is that when I begin to eat, my salivary glands shoot out saliva with such force that they ache momentarily. And when I began to cry during a tender moment during our church service this morning, I had a similar sense of pressure being released. Really weird!

Since this morning's tiredness and a good afternoon nap, I've been feeling better, more energetic. We had a wonderful church choir party this evening - potluck supper and lots of laughter, and that raised my spirits and helped me get out of myself.

Thanks to all of you for words of support and encouragement and prayer. It means more to me than I can say. I really, really appreciate the sense of being held by so many friends as I travel this road. And tomorrow is another day!

Beginning Chemo

2007-01-27T09:56:00.000-05:00

I have begun receiving the chemo treatments. Despite Thursday's confusion, Patty and I both awoke Friday with a conviction that we were going to make things happen, and that we would move forward on both the chemo and the stent for my kidney. And so we did. My internet friend, Jeanne, the assertive cancer patient, is so right about being assertive, and not passive!

Before I describe yesterday's adventure, I want to say that I feel good this morning, I slept well, and with the anti-nausea meds they gave me, I've only had a little queasiness, and that passed. And for those of you who said don't wait to take the medicine before chemo, know that I didn't! In fact, the chemo nurse, Linda, said that she always recommends that people take it, and I was given a pill and then some medicine IV before the infusion.

The details of how we maneuvered all of this aren't as important as the fact that we did. Suffice it say that we were just really clear with everyone (yes, we, as Patty was double teaming with me) that we wanted to proceed, and make things happen. Once we told the oncology nurse, Sue, that we did want to proceed with chemo, she got us back on the schedule. And the oncologist, Dr. J, finally found a urologist in the hospital who would see me, after the two of them talked about my scans. The urologist, Dr. D, didn't think my situation was an emergency, talked about the options for a stent, and said he would have needed an initial appointment/interview anyway, before performing the procedure. Later in the day, we were given an appointment next Friday, Feb. 2, for the procedure, which he wants to do under general anesthesia. I am trusting that in one week, even with the chemo doing its job on the tumor, my blood counts will be high enough for the procedure to happen.

So, what's it like to get chemo? Everyone in the chemo room was really friendly, really nice, and astonishingly relaxed. I liked all of my care providers. I had an infusion of Oxaliplatin, a drug that has been successfully used for colon cancer. The weird thing about this drug is that it gives the patient - that's me! - an exquisitely high sensitivity to cold. This begins with the treatment, and lasts for a few days afterward. No iced drinks, cover my mouth when going out in the cold air - and cover all exposed skin possible, try not to handle cold bottles from the refrigerator with bare hands . . . a strange and surprising list. Linda described the effect on skin as feeling like pins and needles (and I was to discover that she was right, as you will read). I had this infusion on the coldest day of this year, with the temperature never rising above 11 F during the day! The infusion is pretty straightforward, except that the drug can make your arm ache, and the nurses did slow down the infusion when I had one hive, and some soreness.

Two funny stories about the aftermath of the drug.

As we were driving home, I picked up a bottle of water that had spent the day in our car, in the garage four levels below the surface of the clinic building. There was no ice in it and it didn't feel cold, so I thought it was safe to drink. But no! When I swallowed the water, it felt as if there was slush on the top, as the roof of my mouth burst into millions of "pins and needles!" I was so surprised! The feeling continued down into my throat, where it feels more numb and freaky, but that passed also.

We live in an old house, and our furnace had been a little temperamental this week. It was fixed while we were gone, but when we returned home, where our good friend Sandy had brought the kids home from school, the house was still cool - 58 F. When I sat down to go to the bathroom, the toilet seat was so chilled that I had pins and needles on my butt where it had felt the cold seat! It passed in about five minutes, but was wierd! Even this morning, with the heat up to 65 F, when I walk around, the backs of my legs tingle occasionally, telling me that they aren't exactly toasty! Personally, I feel plenty warm enough!

The other drug I am taking is Xeloda, in pill form, each morning and evening after my meal. I started it last night, and had my second dose this morning after breakfast.

I will have more stories to share, I'm sure, but this is a beginning. I am grateful for all of the support from so many of you during this tumultuous week. Now I feel we have a course, a plan, we've begun to implement it, and this chemo and I are going to send this gallbladder cancer packing!

Emotionally Wrung Out

2007-01-25T22:30:00.000-05:00

Okay, I created this title and had something to say even before I read the amazing and supportive comments in response to yesterday's blog. I wept my way through all of your wonderful comments. I am so, so tired. It's been such a long week of doctor appointments and very disappointing news, and aches in my belly, and confusion.

Even tomorrow's chemo is confused because the oncologist wants me to see a urologist to get a stent before I start chemo, and no urologist is available until Feb. 5. Can't wait that long to start chemo. So I don't know what will happen tomorrow, but I trust that something will. I am worried about the tumor, and feel that we need to tell it to stop growing NOW, and to shrink.

I told the students in two of my classes today about my cancer and impending chemo, and that was exhausting, too. I didn't want it to be a secret, something some of them knew or heard through the grapevine, and I also didn't want to give them more info than they could possibly want. I told them my chemo would make me sensitive to the cold weather, and that I could show up in class looking like the Abominable Snow-woman . . . or Nanook of the North . . . or something similar.

So I am exhausted from the emotional ups and downs of this week, yesterday feeling things were settled, and having the rug pulled out mid-day about this urologist appointment. And I am so, so grateful for all of your posts, all of your support, suggestions for staying calm and centered, and your words of wisdom. Do trust that I will not delay taking the anti-nausea medicine, and I appreciate all of the first-hand testimony about that! Thank you, thank you, dear friends, friends from church, from long ago and faraway, and now also, from summer camp, from so many parts of my life. I so appreciate your support.

Bad News %>(

2007-01-24T19:47:00.000-05:00

My concerns on Monday, looking at the scans, were well founded. I have a "recurrence" - a tumor - in the area where my gallbladder used to be, and where my cancerous bile duct was left. I think it's big - 4.5 cm x 3.7 - but the doctors don't seem to be particularly worried about its size. The really bad thing about this bad news is that the tumor is encroaching on my liver, my colon and my ureter - the tube that carries urine from the kidney. So, if it keeps growing, it could have a very bad impact on the functioning of those organs. I met with both the oncologist, Dr. J, and the surgeon, Dr. M, today, and got lots of information about what to watch out for. And, I've made a decision to begin chemotherapy.

I first got a preview of this tumor when Dr. M called me Monday afternoon to describe what he saw on the scan. He's pretty good at reading the scan, and saw the tumor, and described his concern. Then yesterday his assistant faxed over the radiologist's report on the reading, including details about the tumor, and my bloodwork, which isn't good for my liver, but Dr. J didn't think the numbers were that bad, compared to what he's seen. So, I've had two days to digest this information - and to get really, really upset about it. Tonight I'm a little calmer because information and a plan of action helps me feel less out of control.

While my conference with Dr. E at Dana Farber made me think about changing docs, for the moment I've pretty much decided to go with what's familiar, and stay at Beth Israel Hospital for my treatment. I have an appointment to begin treatment this Friday morning. (Yes, that's two days away.) I met the treatment nurse, Linda, and the nurse oncology coordinator, Sue, today, and had a "tour" of the room where they do the infusions. Came home with an armload of information, including lots of warnings about the side effects or potential side effects. The two drugs I'm planning to take (unless I change my mind tomorrow) are Xeloda (capecitabine), taken orally as a pill twice a day, and Oxaliplatin, taken by infusion once in three weeks.

As I anticipate this next phase of dealing with my disease, I would ask those of you following my journey to hold me in prayer and love and light, and to see me tolerating the chemo well. No side effects - few side effects - lots of good days still. I have apprehension, but the intrusion of this tumor makes entering chemo easier on balance. I hope to hold my expectancy and hope for the future.

Scanxiety

2007-01-22T13:53:00.000-05:00

I owe the title of this blog to one of those who commented on Leroy's blog recently about the anxiety that scans can bring. . . . scanxiety. I knew exactly what she meant.

I wrote this brief "poem" below last Thursday, when I was laid low by pre-scanxiety. Today I am home again, after having my CT scan this morning and having blood drawn for testing. And of course I've looked at the CT pictures, and I can see the new "damned spot" in the abdominal wall, although (by my inexact measurements) it only seems to be 1/3 again larger (from 1.5 cm to 1.9 or so). And something is going on with my kidneys - one of them didn't light up in the contrast dye. I don't know what that means, but I don't like it. Sometime today, I'll talk to the surgeon, Dr. M, and see what his response is to the scan, and what he thinks about my kidney. Until then, I'm going to grade some papers (yes, I do give homework early in the semester!) and sit under the sunlamp for a while.

Am I anxious? Yes, unfortunately.

What is to be done with all of my anxiety?
It fills my body, from tense toes to aching neck and head.

I long for my lost, if false, immortality.
I weep for the body I could count on
To carry me through the day reliably,
To think the thoughts needing thinking,
To shoulder the walking, talking, opening, eating, being
Of daily life.

Where can I put my anxiety?
In my mind, I release it, over and over again,
But the body stores it against my will and
Suddenly I am laid low by tension in all of my body,
Making it impossible to go through my day as planned.

I weep for the body I have lost, already.

Second Opinion

2007-01-20T19:33:00.000-05:00

This is a quick update on yesterday's appointment for a second opinion at Dana Farber Cancer Institute. I've received one concerned phone call, and Patty a worried email about the appointment because I said, in my post about Tia, that I'd write more later. I'm fine. The new oncologist, Dr. E, agrees that I have gallbladder cancer (I didn't expect a different result), and he gave me lots of information, answered many questions, and gave me much to think about. Last night and today I felt as if I my brain cells, like little cogs, were whirring and spinning, processing all of the information. And, frankly, last night I was overwhelmed by the day, having met Tia in the morning, and then spending three and a half hours on site at Dana Farber, including almost an hour and a half with the doctor.

Another detail: I have my next CT scan on Monday, and see my current oncologist, Dr. J, and my surgeon, Dr. M, next Wednesday. So I'm really in the middle of this month's process. With that disclaimer, here are some details. . . .

Dr E agrees that he would stage my cancer as Stage IV. I thought I'd heard that from my other doctors last summer, but then when I have been doing so well, I thought I'd misremembered or misunderstood. He also agrees that my cancer is slow growing, and that my progress has been surprising. His nurse practitioner called my cancer cells "indolent," a fancier word than "pokey," but meaning the same thing. Slow growing!

After examining the latest "spot" in my abdomen and looking at it on the November scan, their radiologist and Dr E agree that it's likely cancer, another implant. He gave me lots of options to consider with it, though. Have it surgically removed (but it's in the abdominal wall, which is more likely to have consequences for those stomach muscles afterward), have radiation, have chemo, do nothing. Part of the "do nothing" approach is to take the time to look into immunology treatment for gallbladder cancer. Why keep the "spot" if I'm considering immunotherapy? Sometimes they need an existing, live tumor to harvest cancer cells from the person being treated. Also, if I begin chemo and have a tumor that can be measured, it's a way of telling whether or not my cancer responds to that particular chemo. Otherwise, it's all guesswork.

There are efforts at developing immunotherapy for various cancers in the U.S. and across the globe. However, since gallbladder cancer is so rare - or exotic - there are probably no existing trials, but it's worth seeing if someone would want to do one. And, Dr. E said he thinks I'd be a great candidate for immunotherapy, because I'm asymptomatic and have slow growing cancer. After I've done some more research about the immunotherapy, and have more time, I'll post about it, including some links.

We also talked about chemotherapy, various reasons to begin it, and different levels - mild chemo, moderate, aggressive. No one had talked with me about that, and about considering my options and how to think about choosing. That was very helpful, and gives me good background as I meet with my doctors in the week ahead.

That's the quick version. I got the larger conversation about gallbladder cancer that I wanted when I scheduled this appointment, and now I have a lot to think about.

Combating Cancer Loneliness - Meeting Tia!

2007-01-19T21:43:00.000-05:00

As you can see from this photo, Tia and I met today at Dana Farber Cancer Institute - in the cafeteria, actually! I wrote about Tia when I wrote about the loneliness of having a rare cancer. And, for the record, Tia's daughter Liana, who was also present at our meeting, says it's not "rare" cancer, it's "exotic" cancer! Patty was there, too, and the four of us talked about scans and kids and cancer. Tia got her results this morning, and the news was good; her latest met hasn't changed in size. My appointment, a second opinion with an oncologist at Dana Farber, was in the afternoon, and I'll write more about it later.

Like ambassadors from Cancer World: those diagnosed with gallladder cancer, we brought small gifts to each other. Tia had a wonderful photo of her son's wedding last weekend in a beautiful outdoor site in Hawaii. We gave her two notecards, each made of art work by our kids. We talked about doctors and scans and living with gallbladder cancer.

So, now I can say that I have actually met someone else with gallbladder cancer! We have in common slow-growing cancer (Tia is 17 months post diagnosis), a fierce will to live, and a hope and faith in the future. Tia is a comrade soul, and I feel less lonely knowing her.

Somehow I feel that this post should be longer, but the beauty of our meeting for me was that it felt like old friends getting back together after a long time, even though we had never met before. The conversation flowed freely, and was mostly about ordinary life, connections in place and time, and a developing friendship. I guess that's all I need to say!

"Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors"

2007-01-15T19:27:00.000-05:00

Last week, I received in the mail a copy of an essay written by Alice Stewart Trillin, entitled "Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors." It was sent to me by my friend Maria U, who saw a reference to it, knew that I would resonate with it, and had to travel to a real (not virtual) library to get me a copy. She was so right that I would resonate with it, and I thank her, and I want to share some of this essay with those of you who read my blog.

Published in vol. 304, No. 12 of The New England Journal of Medicine, on March 19, 1981, "Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors" is based on a talk given to medical students at Cornell and Albert Einstein medical schools by Alice Trillin, who was an English teacher, a writer, and an educational consultant. This is a powerful, wonderful essay that speaks to the issues faced by so many of us today who are struggling with a cancer diagnosis. Unfortunately, it appears that you can't read the essay online, but have to order a copy from the NE Journal. There is a summary on the website known as the Literature, Arts & Medicine Database, and you can see how to order a copy, or have one-time access to the article for a fee through the NE Journal of Medicine. Or, you can do what Maria U did, and visit a real library that includes medical journals to read the essay.

Although she wrote this 26 years ago, Trillin's issues, questions and analysis have very much applied to my more recent diagnosis and experience. Unlike me, she did not feel changed by her diagnosis, but rather was struck by the banality of the experience of having a cancer diagnosis and treatment. She does a wonderful job of articulating the issue of mortality, and how our human, collective and individual fear of dying makes us reluctant to engage this conversation with those diagnosed with cancer. (This accurately reflects my experience, especially last summer, as I wrote in my January 13 post.)

Trillin writes, "We are all afraid of dying. ... Our fear of death makes it essential to maintain a distance between ourselves and anyone who is threatened by death. Denying our connection to the precariousness of others' lives is a way of pretending that we are immortal." In those lines, she expresses so clearly what I felt soon after my diagnosis, and have continued to feel. I am so grateful for her ability to articulate clearly this human condition. She continues "We need this deception - it is one of the ways we stay sane - but we also need to be prepared for the times when it doesn't work. . . . for me . . . it is particularly important to face the fact of death squarely, to talk about it with one another." She continues that "[c]ancer connects us to one another because having cancer is an embodiment of the existential paradox that we all experience: we feel that we are immortal, yet we know that we will die."

She goes on to consider the doctor-patient relationship, and the ways in which we are talismans for each other. Talismans, she points out, give us control over the things we are afraid of. First, for patients, doctors and medicine in general are talismans, staging a drama "in which we pretend that doctors have the power to keep us well." Of course! Isn't this the reason that for generations, patients have turned over decision making and questions to doctors, to decide how much to tell us, when and how? This has changed for many of us, certainly since Trillin wrote this article, and yet many of us as patients want to maintain the illusion that doctors, nurses, all those involved in our treatment, know best and will save us. I didn't know until I was diagnosed last May that I didn't want to turn over that power, but rather wanted to be a co-partner in the process, and be given the information and tools that were available to help me understand what was happening.

Patients are also talismans for doctors, Trillin maintains. "Doctors defy death by keeping people alive. To a patient, it becomes immediately clear that the best way to please a doctor is to be healthy. If you can't manage that, the next best thing is to be well-behaved." This was an aspect of the relationship I hadn't considered, although I can imagine how hard it can be for doctors, nurses, and other medical personnel to work in an area of medicine where patients frequently die while under their care.

Another talisman Trillin identifies is that of the will. That we wish to will ourselves well, to list all of the things tying us to life, to let them and our will be enough to keep us alive. She goes on to point out that part of this is believing that illness and death can somehow be avoided by having the right attitude. Trillin also observes that a good friend who died from cancer a few years after her own diagnosis had absolutely the strongest will to live of anyone she had known, and so stands for her as an example of the failure of this talisman. I absolutely value the importance of a positive attitude, and bringing one's full will to fighting illness and fighting for life. But there is a danger in others cheering on those of us with cancer or other life threatening illnesses that if we keep up a good attitude, we will survive. Unfortunately, it's not that simple.

About the garden peas in the title, she observes that sometimes the details of our daily lives, the moments of living, of valuing the planting, the nurturing of treasured garden peas, also becomes a talisman. Being well enough to value the moment is a gift after being too sick to attend to the details of daily life, but even this talisman has its limits. Because I love to garden, and watch spring bulbs, early summer flowers, and especially my raspberries, bloom and (for the raspberries) then fruit, this image really worked for me. Right now in my winter garden, my Christmas Rose is sending up nodding blooms. I try to look at it each day, and love its white winter blossom when all else is dormant.

About these talismans, she comments that of course their "charms" don't always work. However, she also is not suggesting that these talismans should be abandoned, merely that their limits should be recognized. In a later article about her cancer experience, she defines the dragon as that which sleeps inside everyone who has ever had cancer. It is sleeping, she implies, and we do not want it to awaken. "We will never kill the dragon," she writes in conclusion here. "But each morning we confront him. Then we give our children breakfast, perhaps put a bit more mulch on the peas, and hope that we can convince the dragon to stay away for a while longer."

I knew before I read this essay that Alice Trillin had died. In September, 2001, she died of cardiac arrest; her heart problems came from the radiation she received 25 years earlier for her lung cancer. Her husband, Calvin Trillin, wrote that one could say she died of the treatment rather than the disease, but that there is no question she would have been grateful for those additional 25 years.

Another Damned Spot?

2007-01-14T12:21:00.000-05:00

Yes, I think I feel another damned spot in my abdomen, this one a little deeper and a little larger, and also close to my incision. I actually felt this in November, before the other "spot" was removed, but I thought perhaps it was scar tissue. Now I can feel that it's more rounded than it was, that it's grown a bit, and I can see it on the scans from November when I look for it. Curses!

I called the surgeon, Dr. M, this week after "spotting" it on the scan, and he said that it could be another "implant" and that it would be more difficult to treat than the first since it's deeper. (It seems to be in the abdominal wall.) As I mentioned in my December 30 post, my CA 19-9 numbers have been rising, and I've known that this next scan would be important to determine whether or not to start "treatment" (read chemotherapy) besides "watchful waiting." Dr. M mentioned this next scan, and said that if there is sign of spread in my abdomen along with this "spot" and rising scores, treatment will probably be indicated. (And this is what the oncologist, Dr. J, said after the last CA 19-9 numbers.) In an amazing moment of putting a positive spin on my disappointing discovery, Dr. M said that if this "spot" is another small cancer tumor, and I begin chemotherapy, I'll be able to tell partly if the chemo is working by feeling whether there's a change in that spot. He is amazing! And, I suppose he's right!

Some folks asked me in person after my first spot was removed on December 4 if that was a metatasis, and I said no. At least as I understand it, that spot (and perhaps this one) was an "implant," which was a cell or collection of cells that escaped as the surgeons pulled out my sick gallbladder through the incision. As Dr. M described it, gallbladder cancer is particularly prone to escape and implant in or around the incision (and some cancers aren't prone to this; he mentioned colon cancer). So, the cell or collection of cells begins to grow, quickly or slowly, and creates a tumor. That's what my spot was. It's not a metatasis because it's not made of cells that have "hitch hiked" through the lymph or blood system, but rather because the cells were left where they settled in and grew. That's my understanding of the difference, at least.

These next two weeks are full of medical appointments, a scan, and quite likely, some decisions about how to proceed. I also begin teaching a new semester on this coming Tuesday. In the moment, I am holding an attitude of hope, of expectancy that I can handle whatever the news is, and whatever treatment follows.

When I Thought I Would Die Quickly, I . . .

2007-01-13T21:02:00.000-05:00

Last May, when I was diagnosed with gallbladder cancer, I was told that most people with this diagnosis lived two to six months following diagnosis. I assumed that the doctors knew what they were talking about, and that I needed to get my affairs in order, and began to seriously take on my mortality. I also had a strong intuitive hit (that I've written about before) that I was not to assume that I would survive this cancer, that I was meant to fully engage my mortality. Then, the weeks passed, I regained my strength, recovered from my surgery, and felt good. "Confounding my doctors," I would say to folks who inquired about my apparent health in the weeks and months following my diagnosis.

Last month, I passed seven months following diagnosis, and found myself remembering some of things I felt about the mundane details of life in the weeks following my diagnosis.

When I thought I would die quickly, I

* resented paying my bills. Who cared that I had had my teeth cleaned in the month before my diagnosis, and would die with clean teeth? Or not? (I've had my teeth cleaned twice again since then, I'm glad to say.) And I felt this despite knowing that if I died with debts, my "estate" (whatever money or property I had at death) would, in fact, pay those debts. It was just a feeling, but I just didn't want to pay those bills for services I incurrred when I thought I'd be living for many decades. And, I should add, I did pay those bills, I just resented them.

* wanted to tell everyone that I had terminal cancer. I was still dealing with my diagnosis, and I wanted everyone to know and feel sorry for me. Except that this feeling was only a part of me, and I mostly didn't just blurt it out to everyone. The feeling seemed to come from some place that believed if I told enough people, and they believed me, I could believe it.

* kept saying that if the doctors hadn't surgically removed my gallbladder and other tissue so that the pathologist could test it, I wouldn't believe the diagnosis. Now, I know that denial is a frequent normal response of humans to information we don't like and don't want to believe, but I still remember how strong this feeling was. How could I be so sick if I felt so good? And I thought a lot about the surgery, because I learned from Dr. M, the surgeon, that if they had known I had cancer, they wouldn't have operated, and would instead have begun chemo and put in stents to relieve the buildup of bile.

* wept frequently. Life felt very precious, and I didn't want to leave it. Still don't.

* wanted to talk about death and dying, and our fear of it. It's hard to get people to talk with you about dying, I discovered. In general, those most willing to, because of their training and temperaments, perhaps, were our friends in ministry or training for ministry. I was grateful for those friends, because they would listen to me talk about the pain of receiving a terminal diagnosis, and talk about how I was feeling, with the weight of the terminal diagnosis in my heart and my soul. And a few of my very best friends stepped into this listening space with amazing grace and sweetness. I was frustrated when others acted as if I had just received any other serious, but not life-threatening, diagnosis. I wanted to shake them. "Can't you see what's happening to me? I want to talk about it!"

* had hope for the future, despite taking on my mortality, but still didn't imagine creating this blog in August, teaching through the fall semester, and sitting in my most comfortable chair on this January evening feeling like myself. Mostly, anyway, like myself, just changed by these months of living with this life changing diagnosis.

Sunsets and Visualization

2007-01-08T13:03:00.000-05:00

Back on October 7, I wrote about visualizing the cancer cells dancing in the sunset like Dorothy and her friends the Scarecrow, the Lion, and the Tin Man. I continue to do the visualization as often as I think of it, usually during meditation or when viewing a sunset. My image is still essentially that the cells are moving toward the sunset, a natural cell death (apoptosis), and out of my body. I have seen some stunningly beautiful sunsets over the past months, but usually when I don't have my camera handy. The sunset here was photographed from our front porch last month, and only begins to capture the colors and the beauty of this winter sunset viewed through the trees.

Sometimes the cancer cells bring their "own" images to the visualization experience, which is always a surprise, and sometimes a question. One day later in October, the cells were all backed up as if behind a locked door (like people trapped in a fire behind an exit door that won't open). I "opened" the door and watched the cells flood out, and I directed them to the sunset, wishing them "apoptosis" as they flowed. This image had me concerned about the cancer spreading quickly for a while, but with some time having passed since then, and having had a good scan in November, I'm less anxious. And, after that image, when I "gathered" the cells in my mind's eye to travel to the sunset, it seemed there were fewer cells than there had been.

In December, one morning, the cells had picks and shovels over their "shoulders" (well, where their shoulders would be if they had them! They actually do look a little like a Pac-Man, with his round body, with skinny arms and legs), and they were skipping and singing/whistling "Whistle While You Work." This image also gave me some pause, as I don't want those cancer cells doing any work but dying, but it came around the time of my day surgery to remove "the spot," so I'm hoping the work was to go into the sunset and off to the pathology lab!

This morning, the cells were in a playful mood, and they were rolling off to the sunset, and singing something. But now, despite racking my brain, I can't remember what they were singing!

After my first description of the visualization, my friend Susan H said that she imagined me waving a "magic wand" and saying "shazzam" or some such magical word. I had to admit that I don't usually see it with the magic, but everytime I visualize her image of it, I have a chuckle. And once or twice, I've had a wand to wave.

Does the visualization make a difference? I have the same answer I had four months ago. I just don't know. But visualizing the cells, and visualizing them heading for a natural cell death as they approach a gorgeous, colorful sunset, gives me some measure of working consciously to combat their spread. And that's a good thing.

Gratitude and Impatience

2007-01-05T21:48:00.000-05:00

Since gratitude and patience are thought to be two virtues/positive attributes, it may seem strange to have gratitude and impatience together in a post title. Still, in this continuation of "what's changed in the last 7 months," these are two qualities I have cultivated in these months. I can't say that these additional thoughts came to me while washing dishes, but here they are.

Impatience first. While patience is the recognized virtue, impatience in the face of injustice or wrongdoing is a also an important virtue. Since my diagnosis, I just don't feel all that patient with nonsense, with cruelty, wrongheaded thinking, people treating each other badly.

So, this is where I get political. A year ago, I would have held my tongue in a "public" forum unless asked to speak, but now I don't have time or patience to suffer injustice. Tuesday, the Massachusetts legislature, sitting in Constitutional Convention, voted to put marriage equality on the ballot in 2008. I wept when I read of their actions, because Patty and I have been "married in Massachusetts" since June, 2004. I am deeply angered that anyone would want to take away from us (or would have denied it in the first place) the right to legal recognition of our relationship, and the benefits that society and the government have chosen to bestow on those in a legally recognized relationship. Their action doesn't finally put this proposed constitutional amendment on the ballot, as it must be passed by another session of the legislature. So, in the last day, I have contemplated personally visiting each of the 62 legislators who voted to move this proposed constitutional amendment on, and ask them to vote differently next time. And, if you aren't already familiar with this issue, and think that people should always have a right to vote on proposed constitutional amendments, ask yourself whether or not you think constitutional amendments should be used to take away the rights of any minority group. In addition, there's a reason why the legislature votes first. I'm going to ask those representatives to represent me and my family in their vote. I'm not naive, and I do realize that this is a hotly contested issue across the country, but right now, I want to say that this affects me, my life, my spouse, my children, and it hurts us.

As you can see, I feel impatient. I don't have 20-30 years, it seems, for society to get this right...

A postscript to this is that I am still working on my patience as a parent. That's a tough attribute to develop and maintain in parenting, I think.

Gratitude is a quality I've worked to develop all of my life. I try to remember to thank and appreciate those who have reached out to me, who have gifted me in some way. And, I keep working to do a still-better job of expressing my gratitude, to people in my life, and to God. I have felt immense gratitude for the gift of life in these past 7 months. I am grateful to God for my existence, and grateful to my parents for the gift of life made manifest. And I am grateful to all those souls I have met during my life, my fellow journeyers and teachers

I remember that when Patty and I first got together, 16 1/2 years ago, we developed a habit of sitting in silent grace before sharing a meal. After weeks of doing this, I realized that I felt immense gratitude for my job, my work, my profession. This may seem like an "of course" sort of moment, but I hadn't realized the depth of my gratitude until then. I certainly hadn't found the words to give thanks for a job I love.

As I was working on this post, I found an email from my friend Sandy, who shared this thought from her November calendar: Gratitude. More aware of what you have than what you don't. Recognizing the treasure in the simple - a child's hug, fertile soil, a golden sunset. Relishing in the comfort of the common - a warm bed, a hot meal, a clean shirt - Max Lucado

Those concrete, body comfort moments are an important piece of feeling gratitude, I think. Max Lucado has it right; the warm, familiar bed, comforting surroundings, loving presence, creature comforts attended to. More aware of what you have than what you don't. That's where I aim to be.

What's changed in me in the last 7 Months?

2007-01-02T21:14:00.000-05:00

Mulling over the arrival of a new year on the calendar, and that I'm still alive as 2007 has begun, I've been mentally listing some of the things that have changed in the 7 months, 9 days and some hours since my diagnosis of gallbladder cancer. Working on writing this post, I also remembered that I called this blog "Life Changing Cancer" for a reason. Even in August, I didn't feel that I was the same person I had been. So how have I changed?

In no particular order . . .

1. I think we have too much stuff, too many material possessions. I think I do, my kids do, my family does, Americans do, and I wonder what we are thinking. And I continue to struggle with where to put everything. For whatever reason, I didn't particularly think this before my diagnosis.

2. In keeping with #1, I find it easier to let go of things. I've been a collector all my life, saving all my favorite books, stones and seashells, and the elements of my varied craft projects, thinking I'd get back to them when I retired. I have carried my quilting fabric, books and patterns for years, through many moves, thinking I'd make quilts again. And I have quilted occasionally since I first learned how in the 70s, but I've never quilted like I did then. Last August, Patty, my friend Bev and I went through my finished quilt tops, and Bev took one home to have it finished. (I had made her a quilt in the 1970s, but it burned in a house fire a number of years ago.) In the fall, my younger sister, Carla, and I went through my containers of fabric, and cut pieces for quilts, and she took home a big box of fabric and pieces to work with. (Thinking about this, I realize I didn't really have to wait for a cancer diagnosis to move on some of these things!)

3. As you can see from #2, I no longer expect to be alive and doing projects in 30 years. I might be alive, but I no longer have that expectation, and it makes it easier to let go of things, and to make other choices. And if I am alive, maybe I'll be choosing some new craft projects!

4. I've done my best to identify the stressors in my life, and to reduce them whenever possible. I resigned from some of my work responsibilities in the summer, and I think more carefully before saying "yes" when asked to take on something new. As a result, I find it easier to say "no" when that's the right thing to do. I'm meditating regularly, and working consciously on stress relief.

5. I've been working on strengthening my spiritual self these past months. I felt connnected with my spirituality when this happened, but the diagnosis broke open something in me, something that wants more, wants to be more, and certainly wants my life to mean more.

6. I have a new empathy for people with chronic, life-threatening or terminal illness. I have been healthy all of my life, had my first surgery (and it was elective) at 52, and my first broken bone at 58. It's not that I blamed people with physical problems, it's that I just didn't understand their journey in some deep way because that had not been my life's path. Now, my new experience with the medical profession, and my readings of the stories of so many people's journey with cancer, have shifted my lack of understanding, my lack of empathy, for those, like me, in this situation.

7. I'm less likely to postpone joy. Last summer when our family traveled to the southwest for a long-planned "trip of a lifetime" to many national parks, Patty and I began to say "If not now, when?" We were more extravagant on that trip than we'd ever been (and we were still saying at campgrounds), and we didn't spend our life savings, but we have different priorities. When we talked about vacationing in the Caribbean in March 2007, we said "Let's go!" (and we're still staying at a campground). We will go back to St. John in the U.S. Virgin Islands in March, all of us, and if it's my last trip there, I will have gone to a place full of memories, and our family can make new memories. The last time there, Lucy was almost 5, and did some snorkeling while holding onto Patty, but now both kids can swim, and we suspect they will love snorkeling!

8. I frequently feel mortal. We all are, of course, but I didn't particularly feel mortal before this diagnosis. Some days I feel more mortal than others, but it's definitely a place I visit frequently.

Somehow, I think my list of changes was longer while I was washing dishes this afternoon, but this is what comes to me now. It's not an exhaustive list, but it's an honest one for the moment.

A New Year

2007-01-01T20:56:00.000-05:00

I don't have anything profound to say today, but I wanted to make my first post of 2007. And, I want to thank all of you who read my blog, who give me feedback, either through comments here, phone calls, emails, or other contact. Knowing that others are connecting with my story also combats the loneliness of this cancer, this gallbladder cancer.

I have an old-fashioned cold today, stuffy head and sneezing. Something "normal" about having a malady I've had many times over my life. I'm familiar with this one, unlike the still new experience of the cancer.

Tia sent me an old Apache blessing today, and it seems a good way to end this first posting of the new year. For all of you reading this,

May the sun
bring you new energy by day.
May the moon
softly restore you by night.
May the rain
wash away your worries.
May the breeze
blow new strength into your being.
May you walk
gently through the world and know
its beauty all the days of your life.

Blessings and healing to each of you, to me, to our world.

A Medical Update - My Gallbladder Cancer

2006-12-30T18:03:00.000-05:00

I haven't written much about my medical state since the "spot" was removed, and I've been waiting to have a little more information before posting. I also know that some of you, my good friends and family who read this regularly, keep track of my scheduled doctor appointments, so I wanted to describe what's up for January.

First, I'm having a "second opinion" (I think of it more as a consultation) at Dana Farber Cancer Institute in Boston on Friday, January 19. I think of it as a consultation because I don't doubt the diagnosis, although I know that pathologists can be wrong. Mostly, I want to talk with an oncologist who has worked more with gallbladder cancer, just to get a sense of his/her medical opinion about the course of my disease. Patty and I contacted a doctor friend who contacted a doctor colleague at Dana Farber earlier this month asking who is "expert" in this cancer there, or in the U.S. His response was that no one there, or in this country, is expert in gallbladder cancer. (Raising the question several friends have asked: "Is there an expert in gallbladder cancer outside the U.S? I don't have an answer.) Anyway, I've already had all of my records sent to them, and if they had a cancellation in the meantime, I may go for the appointment sooner.

Second, my next CT scan will be Monday, Jan. 22, with my oncologist appointment two days later, on Jan. 24. (Unfortunately for me, with post-scan anxiety, that's the soonest the new oncologist, Dr. J, is willing to see me post-scan.) At that appointment, we'll look at the whole picture and either he'll recommend that we begin treatment, or that we continue "watchful waiting." Of course, those of you who know me know that I'll be coming home that day with the scans, which I'll study on my computer to see what I can see, before the radiologist issues a report.

Third, we have been tracking my tumor marker (through a blood test called CA 19-9) more closely in the weeks since my last scan, largely because of the "spot" and the discovery that it was cancer. Some information about this blood test:
1. Not everyone with gallbladder cancer has this blood test register. Tia told me that her current reading is "3" despite her current mets, and the doctor simply said that the test is meaningless for her.
2. The numbers can get very high when someone is really sick. My numbers were all below 100 before November, I know of folks with readings in the 3,000-4,000 range who are not symptomatic, but have mets, and I have read of folks with readings in the 10,000 range who are very sick.
3. Anything below 37 is considered "normal."
4. My readings have been going up, but not awfully. Here they are:
Nov. 22 - 137
Dec. 4 - 182
Dec. 12 - 190
Dec. 27 - 212
When the oncologist called yesterday with the blood test results, he talked with Patty and I missed him on my cell phone, but he apparently pointed out that this last was about a 10% increase. I personally was hoping my numbers would go down following the removal of the "spot," but that doesn't seem to be happening.

What's next? That depends on the scan on Jan. 22, and how I feel. If the scan indicates visible spread, and my CA 19-9 numbers continue to climb, I will probably begin treatment. If the scan is clean once again, I continue to feel good, and the CA19-9 numbers haven't changed much, then I probably won't begin treatment. There are obviously other possibilities, but we can see what things look like on my next appointment.

On the discussion boards, I've been reading in the last seven months about others with this disease who go downhill rapidly. I see more clearly now why my doctors were apprehensive about our trip to the southwest last summer, three weeks after my surgery and diagnosis. Since gallbladder cancer frequently doesn't respond to chemo at all, I also see why my self-report on how I feel is a real indicator of what should be done medically. Knowing that makes me a little anxious when I don't feel good; then I have to remind myself that I had days when I just didn't feel good before my diagnosis of gallbladder cancer! But it also makes me anxious when I have any digestive drama, and in the last few weeks, I've had a weird sensation in my middle a handful of times that feels like something being constrained, moving through a narrow opening. It's different from indigestion, and it passes pretty quickly, but it makes me worry about my bypass, about the cancer spreading in some way that would interfere with the ability of my GI tract to do its job.

Aside from that anxiety, I am feeling good, with my energy consistent, my body feeling strong, and my spirits generally good. I have two and a half weeks before I'm back on campus (although I have preparation to do for the new semester), and I hope to do some fun, crafty things and to relax a little over that time.

Combating the Loneliness of a Rare Cancer

2006-12-28T22:42:00.000-05:00

When I was first diagnosed with gallbladder cancer last May and began researching the disease, I was stunned by how rare it is. I mentioned the statistics in an earlier post, but depending on whether or not bile duct cancer is included, there will be something between 3,000 and 8,700 cases of gallbladder cancer in the U.S. this year. Seeing those statistics, I realized that not only did I not know anyone, ever, who had had gallbladder cancer, or who even knew of someone, sometime, who had had gallbladder cancer, but that I am unlikely to meet anyone who has the disease. It turns out that I was wrong on the first count, as I learned recently that a friend's mother died from gallbladder cancer in the 1970s. However, the second point will probably be true unless I arrange to connect with one of my long-distance friends with gallbladder cancer in the months ahead.

I feel the loneliness of the diagnosis when I go onto a cancer website, and my cancer isn't listed. Anywhere. Well, somewhere. At the "big" sites, I can find it. The American Cancer Society does have information, as does the National Cancer Institute. There is a Rare Cancer Alliance, apparently formed by a woman who wanted to provide a central source of information and connection for rare cancers, but it combines bile duct and gallbladder cancer, and lists a total of 18 posts on the discussion board over the year 2006.

How do I counteract the loneliness? One thing is by writing this blog; I have told more than one person over past months that writing here is therapeutic, that it helps me process what's happening inside my body and inside my psyche and spirit. Hearing from friends and strangers that they've read my blog, and hearing them relate their responses and their experiences is a powerful antidote to my loneliness.

Just today, I had an email from a woman whose mother was just diagnosed with gallbladder cancer. She had found my blog, and some of the information I provided, and linked to. Her mother is stage 4 and not doing well, but I was glad she could find information on my site.

Another important antidote has been to connect with others who have gallbladder cancer. I haven't personally met anyone else with GBC - yet! - but I hope to. And even if we don't meet in person, I've made contact through the discussion boards (listed on the side links of the blog) at Johns Hopkins, Cholangiocarcinoma.org, and Cancer Compass. Those three discussion boards are essentially it for connection with others with the disease, or who have loved ones with the disease. In addition to the discussion boards, I've made contact by email with a few other folks with GBC - Woody (who has posted a comment on several occasions here), Melissa (who sent me an email that I wrote a post on - see November 8), and, most recently, Tia, from Hawaii.

Tia got my email address from Woody, who is compiling statistical information about those of us with GBC, and she wrote me with her story and then called me on the phone a week before Christmas. Tia is 17 months post diagnosis, and has been feeling good and doing well following surgery, radiation, and chemotherapy with 5FU. Now, she has some mets, including one under her clavicle that's been biopsied. She and her family are searching the internet for promising clinical trials or [alternative] treatments, something that might actually offer a cure. She's finding that her quest may take her outside the U.S. to a country where this cancer is not uncommon. That's Tia's story, briefly, but the exciting part for me was that we connected, about the disease, and surviving, and thriving, and having the rare cancer called gallbladder cancer. And, despite living in Hawaii, she has an oncologist at Dana Farber Cancer Institute in Boston, and we both have an appointment on Jan. 19 there. Perhaps we can meet!

On Dec. 23, the day after my gloomy post "Today, I don't want to know," Tia called me, to say that she knows how I feel. And she does. Ironically, she'd had an attack of sadness about the possibility of no more Christmases the same day I did. How affirming to have someone in my situation call to say she understands! (And I want to add that I sent her a draft of this post, so that she could edit and give the okay for the information about her life that I've provided here.)

What's most important about all of this? Connecting. I feel that all of us find healing in connection, in bringing our spirits, our souls into connection with the soul of another. In life, it can happen through a glance, a kind word, through true friendship where we are willing to be vulnerable with another, through faithfulness in relationship where we stay even when things are tough. And it can happen through the new technology, like the world wide web, and blogs, and the ability to find someone else who is struggling with issues like ours. Healing of the spirit can happen through connection, and I'm happy to have some of my loneliness alleviated by connecting with others affected by this rare cancer.

Making Christmas Memories

2006-12-25T22:00:00.000-05:00

I'm pleased to say that I didn't stay in the state I was on December 22, and that I've treasured some moments with both of the kids in the past three days . . .

Nathaniel, gluing together a manger scene made of foam "marshmallows." (Yes, really!) He got to the part of attaching the ribbon to hold Mary's headdress. "Mom, can you hold this for me? I had a really hard time with Joseph's ribbon." The result was suitably lovely for an 8 year old who makes magic with a glue gun.

Apologizing to Lucy after yelling at her on Dec. 22, when I was still in my grief. "Lucy, I know I'm in a bad mood, and I want you to know that it's not anything you or your brother have done. I'm just feeling really sad about my illness. I know that I am feeling physically good now, and able to do most things, but I'm still sick, and it makes me sad." She nodded, and went on with her computer game.

Later, though, she came in to the kitchen and asked if she could bake cookies with me. I was mixing dough for scottish shortbread - done by hand - and she said, "Can I do that?" with a gleam in her eye. I said sure, and she mixed her own batch, hands in the dough, and all. I told her that the story in Scotland (as I have heard it) is that each woman's shortbread tastes somewhat different, because she has kneaded and worked the dough herself, with her hands.

At bedtime, walking upstairs, she said "Baking cookies today was fun." I replied, "I thought so, too."

At the Christmas Eve service last night, both the kids were back lit by the white lights of the Christmas tree, which formed halos around their beautiful heads.

Lucy sang a solo last night, "Who Would Imagine," and did a wonderful job. The whole service was full of music, with the choir singing five different songs, and all of us singing lots of Christmas carols. The service was full of the magic of Christmas, and I felt touched by grace.

Today the kids first got up at 2:30, but were convinced they needed to get back to sleep, and slept then until 6:00. From upstairs, I heard Nathaniel say to Lucy, "See, Lucy, I told you Santa was real. I asked him for socks, and he brought them!" ( I cannot explain the comment, but I'm still laughing. We think this was a request to Santa whispered under his breath.)

The kids were understandably wired during the morning, and we had laughter, screams of delight, and lots of fun opening gifts. Over the day, we saw our extended family, ate well, and celebrated Christmas. Sweet memories, a wonderful celebration.

Today, I Don't Want to Know

2006-12-22T15:39:00.000-05:00

Warning: This is not a warm and fuzzy holiday posting, but rather a grim and sad one. So, don't read on just now if you are not in the mood.

Today, I don't want to know that I have been diagnosed with terminal cancer. I began this blog last August by saying:

If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life?

My answer then, and in the days since I framed the question, has been "Yes. I would want to know, I'm glad I do know." As the months have unfolded and I have felt well, returned to work, not gotten quickly and intensely ill, continued to recover from the major surgery of last May, and had other experiences, the immediacy of my diagnosis has somewhat faded. And while all of this has happened, I haven't had a day when I thought that I wouldn't want to know. I've seen it all as an opportunity to live more fully, and to be in the moment, savoring the life I have.

Today, however, I wish I didn't know. Suddenly, with Christmas three days away, I just don't want to be thinking that this could be my last Christmas, and have that added weight to the holidays. I loved Christmas as a child, and there is much about it that I continue to love. But with the passing of years, it has come to carry a lot of emotional baggage. To that baggage, I really don't want to add an awareness of my mortality, thank you very much.

Two weekends ago, I baked cookies for two days with good friends who came to roll, and dust, and shape the cookies I like to make just for Christmas. And in baking, we talked, sometimes about heavy and serious things, sometimes about light and fun things. One conversation, with my friend Judy, who is a United Church of Christ minister like Patty, was about the difference between getting a terminal diagnosis (like gallbladder cancer) and getting a serious diagnosis (like a cancer that's more treatable and has a good success rate from treatment). I don't want to be comparing degrees of "badness" for respective diagnoses with anyone, but I can feel the difference of a diagnosis that one expects to recover from, and one where nothing short of a miracle would prolong one's life. (That's me, and I am definitely in the market for one of those miracles.) And perhaps I can most accurately say that I know I would feel different if diagnosed with a treatable illness. The terminal diagnosis makes me wonder if I will be here next Christmas, or, if I am alive, I'll be well enough to bake cookies again for a weekend.

I wish I didn't have cancer. I wish it weren't gallbladder cancer, with its poor prognosis. I wish I could get treated and expect to go on living my life. I wish I didn't know that the cancer is in my body, and that this could just be my last Christmas. I wish I could just enjoy the anticipation and laughter of my children as Christmas approaches, and not worry about next year. Today, I don't want to know.

Shortest Day - Longest Night of the Year

2006-12-21T11:01:00.000-05:00

On this Winter Solstice in the northern hemisphere, I'm still thinking about sunlight and the lack thereof. The sunlamp came a few days ago, and it's felt good to sit with it, even though it's only for 3 minutes to start. I exposed my face for two days, and today I think I'll do my legs. Skin everywhere on our bodies can take in that sunlight to make the Vitamin D.

Suddenly, it seems that something on my mind is everywhere. Newsweek had an article about Vitamin D, the "Sunshine Vitamin," two weeks ago, but I just read it this week. Also, thinking about the comment made by Carol in Ohio about Vitamin D and osteoporosis - thanks, Carol! - I looked at my calcium supplement, and found that it actually includes Vitamin D as well as the calcium. And I heard an amazing story during the church coffee hour on Sunday from the aunt of a friend. Now retired, she participated in a study on osteoporosis a few years ago. She would go in for blood tests every two weeks, and during one two week span in the winter, she went to Florida. When she came back, her Vitamin D level had jumped so much that the techs asked her what she had been up to. So, there you have it. Vitamin D can be good for bones, good for cancer prevention, and good to slow the spread of cancers we already have. Of course, the ideal levels haven't been set, and like many things, there's probably potential to overdo it with supplements.

In any event, I'll continue to get a few UV-B rays each day with the new sunlamp, and hope that my body is making all of the Vitamin D it needs, and hopefullly, keeping the cancer cells at bay.

My last post, on sunlight, also generated some ideas about language for a medical disclaimer from Teresa - thanks, Teresa! - and I think I've pasted it into my sidebar, although it hasn't appeared yet. Although I do like "translating" material for others once I've understood it, I really don't want anyone to think I'm giving medical advice. Even if I had medical training, which I don't, it's so clear that everyone's experience with illness is unique, and that's why medical experts need years of training to be able to give us medical advice.

And, finally, all of this thinking about sunlight led me to really notice what the sunshine looks like these days in Massachusetts, so I took some photos two days ago, when the sun was actually shining. The angle of the sun was so oblique that it looked like the end of the day at 2:00 p.m. I've posted one photo that Patty took of me standing next to a New England stone wall, with a neighbor's small pond in the distance, and one of my water garden, with a fish or two visible along with the sharp reflection. I would have put the photos at the end, but this is my first photo attempt, and blogger chose the spot!

Happy Solstice to all! I celebrate that after today, the light will be returning, slowly at first, but returning.

Vitamin D, UV-B Sunlight and Gallbladder Cancer

2006-12-15T20:18:00.000-05:00

While wandering about the internet, I discovered an article about sunshine, UV-B sunlight in particular, Vitamin D, and cancer. Not just gallbladder cancer, but a number of cancers, especially those of the gastro-intestinal tract. Having found the one article, I have found some other articles on this topic. I've thought of myself as pretty well informed on health issues generally, but I don't remember reading any of this in my pre-cancer days.

Entitled "Solar ultraviolet-B exposure and cancer incidence and mortality in the United States, 1993–2002," the full text of the article that got me thinking about this is available online for those who want more information. The gist of this research, which uses data of 3 million cancer diagnoses from 1998 to 2002, and 3 million cancer deaths from 1993 to 2002, is that some cancers are more prevalent in areas of the country where people are less likely to have exposure to UV-B sunshine, and thus less likely to have good levels of Vitamin D. And, most important to me, this is true for women (but not necessarily men) with gallbladder cancer. If you are reading this and affected by another cancer, it's worth reading the long list of cancers in the study that the authors describe as impacted by lack of Vitamin D.

Let me try to say this more clearly (because goodness knows, the article has lots of technical medical language in it). Because parts of the U.S. are far enough north that even if we are outside during the winter months, we do not get enough UV-B sunlight to make the Vitamin D we need to have sufficient amount in our bodies. In another article this week, I read that the minimum daily requirement for Vitamin D was established by the government as a minimum to prevent rickets (early 1900s), and certainly it did not anticipate that many of us would spend our days indoors as well as be living too far north to benefit from the sunshine.

You may be wondering how all of this fits into the dermatologists' campaign over the last years to see that all of us wear our sunscreen outside. I'm not a doctor (as most of you reading this know), but I have heard even dermatologists say publicly recently that we should all be getting about 20 minutes of sunlight on our unprotected skin each day to ensure adequate amounts of Vitamin D in our bodies. So, I think that even with their worry about melanoma, they are recognizing that getting some sunlight is valuable. But after that 20 minutes, they want us to put the sunscreen on and restrict our exposure to the intense mid-day sun.

So, back to this study. Another aspect to this study is that while we can take Vitamin D supplements, there is actually some evidence that getting the sunshine, UV-B rays particularly, and making our own Vitamin D, is actually preferable to the supplements.

It seems that gallbladder cancer in women is statistically linked to insufficient sunlight exposure. As a result, I have purchased a "sun lamp" with UV-B rays, and when it arrives next week, I'm ready to use it the prescribed 20 minutes each day. Maybe it will slow the progression of the disease (which the article suggests sufficient UV-B exposure, and Vitamin D might), and maybe it won't. But I'll at least have a better mood through the dark winter days of Massachusetts, and maybe I'll even look a little tanned, instead of pasty! And, thinking back to the summer months immediately following my diagnosis, I am remembering how much time I spent outside, in the sun, wearing sunscreen, but not being obsessive about it, since I was no longer worried about skin cancer as much as I was about surviving gallbladder cancer for as long as possible. So, maybe the summer sunlight slowed the progression of the disease, and maybe my sunlamp will help now, too.

With this posting, I am thinking it's time to put a "This is not medical advice" warning on my blog. First, I have to figure out how! Thanks for reading.

Expectations

2006-12-11T13:49:00.000-05:00

Expectations are dangerous things. We can have "good" expectations, or more accurately, expectations of good things to happen . . . "I'm looking forward to Christmas, it's going to be wonderful!" (words either of my children could speak at any moment in the next two weeks), and expectations of bad things to happen . . . "I'm worried that that pesky, damn spot of cancer in my abdomen was a metastasis, or can cause a metatasis because it connected to my lymph or blood system." (The last part is according to the pathology report that was available this past Friday, and these are thoughts I've been having a lot over the last few days.)

Why are either of these dangerous? While anticipation and yearning can be powerful, intense feelings, and windows to some of our internal process about an upcoming event, deciding how that event is likely to unfold is dangerous. I learned some of this perspective years ago when I took a weekend workshop with two women who then referred to their work as "The Love Project." They have since changed their name to Teleos Institute, and like most ongoing projects out in the world, they have a website.

"Have no expectations, but rather abundant expectancy" was one of the original "Love Principles" articulated by Arleen Lorrance of the then "Love Project." A full list of the principles can be found at their website, and I'm including them here as well. While they are essentially simple, they can also be unpacked to provide useful principles for changing the way we think about ourselves, our lives, and those we encounter on our life journey.

Receive all people as beautiful exactly as they are.

Be the change you want to see happen, instead of trying to change anyone else.

Create your own reality consciously.

Provide others with opportunities to give.

Have no expectations, but rather abundant expectancy.

Problems are opportunities.

As I thought about writing about expectations, expectancy, and the ideas of Diane K. Pike and Arleen Lorrance of Teleos Institute, I reflected on the number of times in the months since I began this blog that I have discussed and described some workshop I've attended in the past. So, I want to name that yes, I did attend a lot of workshops, that I saw them as part of my spiritual journey, and now I'm happy to name one or more pieces that I got from doing the work I did. At least the learning isn't all lost to time!

So, about my expectations. Okay, so I remember the principle, but I don't always live it fully, I admit. As time passed with my clean scans, I expected to feel delighted and relieved to reach the six month mark without needing treatment and without experiencing additional effects of the gallbladder cancer. Instead, I admit I've spent the last four weeks, since the week before my November 17 scan, worried. (I just counted the weeks, to see if my sense was indeed correct, that's it's been that long.) So, the six month anniversary of my diagnosis has come and gone, and I haven't been feeling lighthearted and pleased, but rather anxious and fearful.

How can I shift from my anxiety to a place of expectancy, or openness to the possibility of "good" things, and a trust that if "bad" things happen, I can handle them? Just asking the question helps me begin to think about it all differently. If I am committed to living fully in the time I have (and I am), then living in fear and anxiety is not fulfilling my deep desire. Feeling that desire, that yearning, and withdrawing my expectations of outcome and timing can be a good place to start. Don't misunderstand, it's not that I don't want to live many, many more years. It's just that I don't want to miss the moment, the present, the now of my experience because I'm worrying about what's going to happen next month, or in six months, or a year, or five years. I think that expectancy is about living in the now, and not in the unknown future. That's what I want, to be here now.

That damn spot was Cancerous!

2006-12-07T21:20:00.000-05:00

Today, I talked with the sugeon, Dr. M, who had talked this morning with the pathologist, although the written report has not yet been issued. The damn, pesky, annoying - but now gone! - spot was galllbladder cancer!

My intuition was so strong that it was cancerous, I didn't feel surprised. But, the news is so powerfully bad, I felt kicked in the stomach, knowing for certain that it had been a cancer nodule growing in my abdomen, under my skin, available to be touched. I hate this cancer! Cancer sucks!

Since talking with the doctor, I've wondered if I need to worry about whether or not I have to worry about the cancer spreading from where the "spot"/nodule was located. I didn't think to ask the surgeon. Probably next week, I'll talk with the oncologist, and see what he makes of the pathology report.

I am relieved, immensely relieved, that the spot is out of my body. I'm glad I trusted my intuition about it - assertiveness is valuable for cancer patients! - and I'm glad it's gone. But I really wish I had been wrong, and I wish it weren't cancerous.

Feeling my anger and other feelings . . .

2006-12-05T19:12:00.000-05:00

Over the past two and a half weeks, as I anticipated first the CT scan and its results, and then the removal of the pesky spot, I have been awash in feelings. Most of them have not been fun to be awash in, and I am looking forward to the possibility of other feelings coming up now that the "pesky spot" has been removed.

In the 1980s, I attended, and then helped to lead, a series of psycho-spiritual workshops called "Opening the Heart." We did many exercises at those workshops to help participants feel and release "stuck" feelings, feelings left over from past experiences, but not fully felt and released from the body. As I have been awash in my anger, sadness, and anxiety about my gallbladder cancer and the tests and appointments of recent weeks, I have been grateful for what I learned at Spring Hill (which was the name of the organization running the workshops in the 80s and 90s, but which has since closed). The Opening the Heart workshops were created by Robert and Judith Gass, and are sometimes still offered at the Omega Institute in New York.

That's the background for how I've tried to handle the anxiety, fear, anger, and sadness that have spent too much time in my body over these past few weeks. First, I felt a lot of anxiety about having the CT scan and learning whether or not there was sign of the spread of the cancer, meeting a new oncologist, and worrying about how much longer I'll live, and when the cancer will begin to spread. And I've been worried about the now-removed, annoying, changing, spot in my abdomen. I've written about the anxiety before in this blog (see September 15 especially). But some of these other feelings have gained a new intensity around the cancer diagnosis during the last few weeks.

I have been feeling anger, red hot anger at the cancer. Last Friday I was baking cookies for the church Christmas fair, and I realized I was feeling really mad at the cancer. Mad because I love baking cookies, and I want to be baking cookies for many years to come. If you don't know me, and don't know how much I love to bake, this probably sounds really strange, but it's true. Last summer after my diagnosis, my friend Maria kept asking me if I was mad yet, and I kept replying that I didn't see that there was anyone to get mad at. Well, now I'm mad at the cancer, as illogical as that might be. But then feelings aren't known for their logic, are they? . . .

I have also been feeling sadness about the cancer, sadness about some of the things I'm mad and anxious about. How dare the cancer threaten to end my life prematurely? I don't want to die now, to stop baking cookies, to stop teaching, to stop loving and parenting my kids and loving Patty and my friends. I am not ready to die! I resent how this disease has sabotaged my life, and changed the focus of how I live. I want my life back! Well, I guess I'm still more mad than sad, although I know the sadness is there, too.

Feelings, feelings about the cancer, feelings of being cheated and robbed and held hostage by wayward cells that have forgotten their true nature. Yes, I am having feelings, and mostly now I am mad!

Spot, Gone!

2006-12-04T11:49:00.000-05:00

This is a quick post, following outpatient surgery this morning using local anesthesia to remove the pesky spot referred to in several earlier posts. It's gone, off to the pathology lab for close examination.

Patty and I made a slow, very slow, long drive up to Beth Israel Deaconnes Hospital in Boston, for the procedure. The weather folks had predicted a messy commute, and they were right, with rain followed by heavy wet snow, and everyone seeming to have left early to beat the traffic! Still, we made it.

The procedure was simple, but totally weird. I could see the smoke rising off the cauterizing utensil they were using as they removed the spot . . . a smoking abdomen! Bizarre. Dr. M said that the "spot" was about 1 cm, and round like a marble. When he examined it before the surgery, he recognized that it felt different than it had in October when I went to see him about it. After removing it, he labeled it "suspicious," but we'll have to wait to see what pathology has to say about it. In any event, I'm glad it's out!

Since my last postings mentioning the spot, and Julie's "Out, out damn spot!" comment, we've all been quoting Lady Macbeth frequently. And now it's out, and I feel immensely relieved. Thank you to all of you who wrote here or by email, or expressed concern in person about my little procedure to remove that pesky spot. I very much appreciate all of the loving concern flowing to me and my family. And now I can focus on baking my Christmas cookies (an annual tradition for me) after teaching my last classes of the semester this week.

This Pesky Little Spot

2006-11-28T21:55:00.000-05:00

Finally, I have news. After the news of my doctor visit last Wednesday, I didn't post over Thanksgiving weekend because I've been anxious to talk to the surgeon about removing the spot in my abdomen along my scar. I finally talked with Dr. M today, and he's going to do day surgery with local anesthesia next Monday, December 4.

The oncologist doesn't seem worried about this spot, the radiologist didn't even comment on it in his report, and I'm not sure that Dr. M is worried about it, either. But he gets that I'm worried, and he's going to remove it. On the CT scans from mid-November, there's a side view where the spot is really clear, and it's connected to two "bright lines" that make me wonder if they are blood vessels feeding the spot. I could be completely wrong, and I hope I am, but I am very clear that I want it out. I guess I've mentioned that!

In the last week, I've discovered a new blog, the "Assertive (Cancer) Patient." The author, Jeanne, has a wonderful way of encouraging cancer patients to be involved and assertive in their treatment. I've certainly discovered the importance of speaking up for myself, making sure I know what's going on, and also trusting my instincts. Jeanne's main page begins by noting that reasons to be assertive are:
* You will get better care.
* You will probably live longer.
* You will feel better about yourself and your illness.

So, whether I'm right or wrong to be worried about this "spot," I know I'll feel better once the surgery is over. And now that I have an appointment, I can think about other things. Like surviving/thriving six months post diagnosis! Like the plans Patty and I just made to go to the Virgin Islands in March for a winter break! Like living longer than my doctors ever imagined when they diagnosed me six months ago.

Guardedly Optimistic

2006-11-22T20:35:00.000-05:00

First, the good news. There is no sign of new cancer in my abdomen (and this time the radiologist got a good look at the site of the surgery and my cancerous bile duct).

Next, the not-so-clear news. The spot in my abdomen has grown. I could see it on the CT scans that I spent hours looking at over the weekend. The radiologist didn't even notice it (it's not "in" my abdomen, but just under the skin by my incision scar, which is why I can feel it so readily). The new oncologist, Dr. J, said that it could be a "granuloma. . . . (something)" and not an "escaped" cancer cell from the surgery that's been growing. I don't have a good feeling about it, and I want it out!

The good news about the "spot." Dr. M, the surgeon, has agreed to cut it out, and left an email message for Dr. J to that effect. I haven't talked to him about how soon we can schedule it, but I'm hoping it will be within a few weeks.

The not-great news about my tumor marker. It's gone up. However, it hasn't gone up much; from 70 to about 134 since September. Folks who get really sick from gallbladder cancer have numbers in the thousands. The oncologist wasn't particularly worried, and said that it is "indicative," but not "diagnostic." The best possible scenario would be that the "spot" is removed, is escaped cancer cells that have been growing, and my tumor marker goes down afterwards.

The bad news. I still have gallbladder cancer. Bad news, indeed, but not "new" news.

The good news. It's almost six months since my diagnosis, and I am still alive. I continue to feel good, and to enjoy my life, and very much to appreciate the gift of life.

The really good news. I am feeling good, feeling grateful, feeling loving as I look forward to celebrating Thanksgiving tomorrow and this weekend with family and friends. And I know that I haven't waited until this one day in a year to express my love and gratitude to those in my life who love, support, and care for me. Happy Thanksgiving!

More waiting, not much information . . .

2006-11-19T20:46:00.000-05:00

I wasn't going to post anything until I meet with the oncologist, Dr. J, on Wednesday, but I know that many of you who read this are waiting for news.

On Friday, I had the CT scan and gave blood. I drove in on a rainy morning, arrived by 7:30, and was done by 10:00. I did discover that I could get a copy of the CT scan on CD (Thank you again, Woody, for letting me know that it's possible!), and I had them make a CD of my most recent scan, and the other three I've had done this year.

So, briefly, the surgeon, Dr. M, did call me on Friday night to say that he didn't see anything troublesome in my liver, but that, below that area, it was hard to read the scan. So, he's guardedly optimistic, but feels that he needs to see what the radiologist has to say in the written report. He could see the spot in my abdomen on my surgical scar, and said it looked troublesome. We're hoping that the radiologist report is in tomorrow, and he can call me, and have his secretary fax me the report. Still, he's not the oncologist, and that's where we'd be talking full interpretation and possible treatment.

On Friday afternoon and Saturday, I spent many hours learning to use the medical scan-reading software and reading my scans. Finally figured out a lot of it, although I don't understand a lot of what I see. Having the earlier scans, where no one was worried about the results, and the radiologist's reports from those scans, made it easier.

So, no real answers, and still lots of questions. Guardedly optimistic. I will post something on Wednesday night, Nov. 22, after we see the oncologist, even if it's a brief message with the outcome of the visit.

What to do while waiting . . .

2006-11-16T16:42:00.000-05:00

What is there to do while waiting to take a test, and then wait for the test results, when the test isn't even one I can study for in order to ensure a better outcome? My CT scan is tomorrow, and, while I've made it through the week pretty well, with only low level anxiety, today has been harder.

I stayed home from work today, because I spent most of last night in the bathroom, having "gastrointestinal disturbance." I woke still feeling sick, and tired from not getting enough sleep, to actually go to work. So, this morning, I caught more sleep and slowly began to feel a little better. But then, I found myself restless, worried but trying not to worry, about tomorrow's scan. So, what to do?

Sharpen all of the pencils in the house. In a house with two school-age kids, pencils are hard to find, and even harder to find with a point. Tracking them down, sharpening them, and returning them to their various resting places was a totally engaging and satisfying activity for about half an hour.

Water all of the house plants. I'm always meaning to do this, but too busy, or it's evening (when it's not a good idea to water them), and sometimes too much time goes by between watering. Good for another half an hour (yes,I do have a few house plants!)

Go through all unopened junk mail (with a few bills and interesting pieces thrown in). I tossed out a lot of unopened envelopes from charities looking for donations (amazing how much mail you get when you make some charitable donations, and everyone wants your money), and from various sources. I also found a few unpaid bills that I need to attend to before I go for tomorrow for my CT scan.

Download all "updates" on my computer. Also time consuming, but not attention consuming. Will the new update for Windows Explorer actually fix the problems the last one had? I have no idea!

Contemplate making a new "scrapbooked" page for the front of Patty's daily calendar. She gets a calendar book that's 8 1/2 x 11" with a window on the first page. I personalize it for her with some pictures of the family in a scrapbooked page. I haven't done one yet this fall, and need to get busy! Perhaps that will be a weekend activity, because so far I've just thought about it.

So, those are a few of the lowkey things I've done to keep myself occupied today. And, I do actually have some good news about the delay between tomorrow's scan and seeing the oncologist (6 days, but who's counting?). I talked with my surgeon, Dr. M, from last summer, and he will read the scan online, and call me with his assessment, no later than Saturday morning. He also told me (Thanks, Woody, for the information about getting your scans on a CD) that I can get the visual images also, since they are part of my hospital record. He doesn't know if I can get the pictures the same day, but I can definitely get them. I'll find out more tomorrow.

As Thanksgiving approaches, I realize that I am immensely grateful for Dr. M, who is one medical person who actually gets it about the anxiety of waiting for test results. When I explained my concern, he offered to call me before I could ask. He said that with folks in remission, he frequently tells them to anticipate, with a six month test interval, five months and 29 days of relative peace of mind, and then a day of major anxiety. So, he'll call me Friday if he has a long enough break from his surgical schedule, or Saturday morning if he gets tied up.

Updates to follow as I find more things to do while waiting . . .

Love, Cancer and Vulnerability

2006-11-13T23:08:00.000-05:00

Lately, I've been thinking about the vulnerability of loving a person with cancer. Like many folks who are diagnosed with cancer, after my gallbladder cancer diagnosis I found that some of the folks in my life drew closer, and some pulled away. Those who drew closer have provided amazing emotional, physical, spiritual support for me. And those who have withdrawn are suddenly not in touch and not connected. I don't know whether any of my friends in the second group made a conscious decision to withdraw, or if it just happened somehow. And I don't know how many of my friends in the first group, those who have moved closer to me, have thought about the consequences of their closeness.

In the 1980s, two friends of mine were killed while vacationing in the Caribbean. Murdered on the beach, those of us left behind felt shock and horror at their sudden death. This may sound like an obvious observation, but their deaths brought me the realization that when we love someone, two things can happen. They can leave us, through death or dissolution of the relationship, or we can leave them, through our death or a decision to end the relationship. Those are the options, really. It was the first time I was able to articulate the true vulnerability of loving someone, whether it's a friend, an intimate partner or a family member.

In the past, I have been one who withdrew after a cancer diagnosis. My friend Willa was diagnosed with lung cancer almost three years ago, and soon after, we spent a wonderful afternoon eating and talking and sharing stories. She was determined to fight her cancer, and seemed convinced she would win the fight against the cancer. I left that wonderful day with a strong intuitive sense that she would not survive the cancer, and then I had to decide whether to be with her, loving her, but feeling strongly she would not survive, or whether it was better for me to withdraw. I did withdraw, except through cards and emails and phone calls. I didn't see her again before her death in May of 2005. Given that situation again, with my own experience, I would not withdraw, but I would need to decide how to talk with her about my own feelings about her illness. It's tricky.

As a person with cancer who would very much like to survive this illness, I also have a strong intuitive feeling that I am not meant to assume I will survive. I hope, very much, that this doesn't mean the gallbladder cancer will kill me, but the same intuitive sense that told me that Willa would not survive has told me to take this illness very seriously, not to assume that I'll survive. So I do my best not to be in denial, and to take this illness and diagnosis in full awareness of possible/probable consequences. I hope to be here for many more years. But I digress.

Thinking about the vulnerability of loving someone with cancer, I have been thinking about my friends, longterm and new. My longterm, long distance friend Bev has been consistent in her loving attention. When she heard about my diagnosis, Bev called me in the hospital with two things to say: "I love you. When can I come to see you?" Those were the perfect words for me to hear a day or two after surgery, still hospitalized and still reeling from the diagnosis. Later, when she came to visit and stay for a week, Bev sat with me in stunned companionship as we contemplated the diagnosis. "You need another spring, at least," she said, and we both cried. I haven't asked Bev if she's contemplated the intensity of continuing to be in relationship with me, knowing that I have a terminal diagnosis.

I've also been thinking about new friends. I talked with my new friend Sandy about this last week. We've had a developing friendship for less than two years, and we meditate together weekly. Sandy said that she has thought about the vulnerability of being in an ongoing relationship with me, and she doesn't plan to go anywhere. We talked about this and we cried. How much easier, I think sometimes, would it be for her to leave now, and not to wait, not to worry with me as I anticipate a scan, not to worry about where this disease will take me. I don't want to lose her friendship, but I think about this.

And I think about the vulnerability of my family, my family of choice and my family of origin. Because we are family, they may not feel they have a choice, although we all know that family members do sometimes leave when faced with disease, or financial hardship, or the lure of something more enticing around the corner. I think about Patty, struggling with me through the challenges of this disease, and of my children, who are surely too young to lose a parent.

Loving someone with cancer means being vulnerable to loss, to pain, to the struggles the disease can bring. If someone you loved had cancer, would you choose to stay in relationship? Would you move closer, or farther away, or maintain your current distance? Do you know? Could you bear the vulnerability?