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.