Tuesday, May 29, 2007

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.

Saturday, May 26, 2007

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.

Thursday, May 24, 2007

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.

Tuesday, May 22, 2007

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


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?

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.

Friday, May 18, 2007

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.

Wednesday, May 16, 2007

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?"

Saturday, May 12, 2007

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.

Wednesday, May 09, 2007

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.


Monday, May 07, 2007

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!

Sunday, May 06, 2007

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.

Thursday, May 03, 2007

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!