A Celebration of Life

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

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!

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...

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)

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)

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)

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

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...

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

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!

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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?

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.