This Pesky Little Spot

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

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

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

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

Guardedly Optimistic

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

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

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

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

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

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

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

More waiting, not much information . . .

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

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

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

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

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

What to do while waiting . . .

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

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

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

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

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

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

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

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

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

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

Love, Cancer and Vulnerability

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

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

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

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

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

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

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

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

Out of Control

Out of control is how the life of a cancer patient often feels. I certainly know the feeling all too well. Did I do something to make my gallbladder cells travel down the mutation road? Am I somehow responsible for getting cancer? Mostly, I think the answer is no, and that I will probably never know why the cancer cells were able to develop in my gallbladder. In addition to worrying about the cause of the cancer, I worry about whether I am doing the right things to prolong my life, in fact I worry and wonder about whether or not anything I do matters with respect to the cancer again affecting the functioning of my body.

I am not alone in this wondering. On one of the (three) discussion boards for those with gallbladder cancer, Melissa just wrote to me, in response to my posting that I'd had a clean scan in September:

I am glad to hear that your scans have come back clean, I can only wish that mine would have but I am not giving up hope. What type of diet are you doing. I am willing to do what I can to kick this thing in the butt. I went 6 months of treatment and then 4 months clean and my last scan showed that it is back so i am doing the chemo thing again. so if you can tell me what it is that you did that might have helped i would love to hear....... right now I am just so tired of having people tell me how sorry they are and that they have never seen someone as young as me get this cancer..
some words of advise would be great. thanks

My heart has been aching for Melissa since reading the question on the discussion board, and I'm still working on my response. But I know that mostly I'm going to say that I am doing things to try to stay healthy, but I really feel that it is grace that has kept me free of signs of the cancer so far, since the initial surgery. Grace, a wonderful, amazing, awesome gift of ongoing life and work and time with my family and other loved ones. I don't think I did anything, really, to cause this cancer, and I don't really think that anything I'm doing has given me the clean scan results I've gotten over the past months. Don't misunderstand; I'd like to think that I'm in control, and that my actions are having an impact. Don't misunderstand either, and think I'm going to stop doing the things I'm doing, because I have hope that they may be making a difference, keeping the cancer from spreading. And at the same time, I have to admit to not feeling in control of any of this with my actions.

The day I began this blog entry, I read Leroy's blog for November 8, and I was amazed to see that Leroy was also writing about the search for meaning of the cancer, and how out of control we feel with our diagnosis. We want meaning, we want hope, we want to think that we will recover and that life will go on. When we don't have symptoms or signs, or when we are actively in remission, we are hopeful but worried. When we are active with the disease, recovering from surgery or in treatment, we want to know what we can do to get better. We want successful treatment, the right diet, good medical care, recovery. We want something to do to get better, to feel in control, even if in small ways. Leroy has written about this more than once, and Melissa's question to me so crystallizes the issue.

What helps when we feel out of control with cancer? I don't know. I know that my life feels like daily walking the line between hope and despair, between what is known and what is not known, between thinking I could be in control and letting go of the belief I can control my body, between blame and surrender, between opening to healing and recognizing the truth of the cancer still in my body, between envisioning the cancer self-destructing in the sunset and recognizing the medical reality. The lack of an answer, a clear sense of the future, of what path my life will take, is painful and challenging, but it's what is right now, for me, and for so many others with gallbladder cancer. So I'll keep doing what I'm doing in hope that it is helping, and I'll keep hoping for healing.

Just Under the Surface

I lost it today. Had a phone call from the office manager for the new oncologist. (Did I mention that I HATE changing doctors?) It turns out that he is not willing to see me on the same day that I have the CT scan, and in fact, wants to wait until the radiology report on the scan is available. Yeeeks! That is at least three-four days . . . I've been feeling "normal" lately, feeling that I'm handling everything well, and the conversation with the new oncologist's assistant sent me into a tailspin.

So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?

For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.

I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.

So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.

It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.

The River Ride - Part II

This post is Part II of my river trip story, tubing down the Virgin river outside of Zion National Park in Utah. The posting just before this one begins the story; this posting ends it. At the end are the Bible verses from Isaiah with which we began, ended and interspersed the story as I read it to our church.

When I surrendered, I could be on the river without fighting the experience. The river was flowing, I couldn’t get off. The rocks kept coming, and I was aching, and I could do nothing about it. So, I relaxed as much as I could given my exhaustion. I trusted that I was safe, ultimately. I just wanted the journey to end.
Finally, the first bridge came. I looked eagerly on the side where the road would be, but there was no path, no place to exit. Lucy and I kept floating and bobbing down the river. She was delighted, and I was dismayed. But once more, I settled into just being on the river, and surrendered to the experience. I felt relief that I had seen that first bridge, and dismay that the trip was only half over.

The second and third bridges came sooner than I’d hoped, having been told that the first bridge was halfway. Not soon enough to keep me from being completely exhausted, but soon enough that I didn’t give up. How could I? The river was flowing and carrying me along. And then, finally, almost three hours after we had left, the trip was over, and Lucy and I climbed out of the river and waited for our ride. In my journal later that day, I wrote that it was the best and longest “log flume ride” I’d ever been on, despite my exhaustion.

Later, I thought about that moment when I surrendered to the river, to the experience. I stopped fighting and let it flow, let myself go with it. And that surrender was healing, not of my physical body, but of my spirit and soul. Like life, the river kept going, and my surrender was part of living and healing and knowing that I could survive even the sharpest rocks and deepest drops.

Thinking about this birthday river trip, I see it as a metaphor for my life, and especially my current life changing journey with the cancer diagnosis. There are tranquil times, when I have no cancer symptoms, and my recovery from the surgery is going well. There are rocky, rocky rapids when a CT scan is scheduled, and I worry about the cancer growing and about needing treatment. There are times when I surrender well to the challenges of my illness. Then, as on the river, I trust that I am safe, that I can live in the moment, and that I can savor the life I have. Then a body twinge throws me back into the rocks, and again I am challenged to surrender.

All of us, I think, are on a river trip, the river we call life. There are tranquil times, and at our best, we savor and appreciate them. And many of us encounter rapids and rocks and challenges we feel unprepared for. Our challenges may be physical illness like mine, or the difficulties in relationship with a spouse or family member or colleague or dear friend. We may experience addiction, failure with work, or deep disappointment with our parenting or in our children. We may find that growing older is harder than we ever thought. We grieve the loss of loved ones, those who have loved us and held some of our history. Whatever the rocky places in our rivers, we are challenged to surrender, to turn over to God our need to be in control, and to trust that God holds us safe. God offers healing, if not in body, in spirit, mind, soul, and heart, if we can ask for God’s company on the journey.

"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD, your God”

The River Ride - Part I

Last Sunday was Healing Service Sunday at our United Church of Christ church, and Patty and I did a "dialogue" sermon. I did the storytelling, and it's the story of a river tubing trip I took last summer, soon after surgery. Because it touches so many of the themes of this blog, I wanted to post the story here. It begins with the Old Testament reading that Patty read at the beginning and end, and at significant places in the story. I have only placed it at the beginning of the blog entry.

The River Ride

Isaiah 43:1-3
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD, your God”

On my 59th birthday, June 18, this past summer, Patty, Lucy, Nathaniel and I had begun our southwest trip at Zion National Park. That morning, we hiked along a river, and in the afternoon, Patty proposed a tubing trip down the same river, but outside the park. Tubing! It sounded like great fun on a hot, dry summer birthday afternoon. Patty and I had tubed down a tranquil Pennsylvania river many years ago, and it had been delightful. I was ready to go, despite the fact that I was 3 ½ weeks post major abdominal surgery, as most of you know.

The surgery was to clear a blocked bile duct and remove my gallbladder. After the surgery (again as most of you know), I was diagnosed with gallbladder cancer, a rare, aggressive cancer with a poor prognosis. Our family went on our long planned trip to the southwest anyway, and on my birthday, my recovery from the surgery was going well, but I was still pretty weak.

We went into town and rented four tubes. I saw the sign on the wall that listed health conditions that counter indicated the wisdom of a tubing trip, but I assumed they applied to someone else. Although I was recovering from surgery and staggering from my cancer diagnosis, I still saw myself as an essentially health person. (Go figure!)

As soon as we got to the river, it was clear that the water level was low, and there were lots of rocks in the river. Lots of rocks. As soon as he saw the river, Nathaniel’s response was dramatic and negative. He did not like tubing on this river, but we encouraged him initially to try it and see if he liked it better with experience. After about 10 minutes, Patty realized that this trip wasn’t meant for all four of us, and she and Nathaniel pulled out. The water was moving fast, and we had passed two small rapids before Nathaniel and Patty left.

I never considered getting out. It was my birthday, I was up for some fun, Lucy was loving every minute, and clearly needed an adult to be with her. They had told us that the ride would be about 1 ½ hours, and I was ready.

Lucy and I continued on, with the water continuing to move quickly, more little rapids, then some longer, larger rapids, and soon, no place to get out of the water. Every time we hit rocks, I had to lift myself up in the tube to get from being bruised. Sometimes I would be caught on a rock, and would have to push myself off to get back into the flow of the river. Sometimes a tranquil space would open up, and then there were more rocks, more rapids.

One hour or so after we began, I was done. I was exhausted, my arm and stomach muscles ached, the sun was hot on my skin, and I wanted to get off the river. There was no exit.

The tube people had told us that we would go under one bridge about half way, and then we would see a second and third bridge toward the end, and we should get out then. When I was tired and done with the trip, we had still seen no bridges.

After realizing how exhausted I was, I fought the river for a while, wishing for the bridges. I told Lucy that if there was a place to get off at the first bridge, we would leave. She was disappointed, and made it clear that she didn’t want to leave before the end. Lucy was loving every minute of the trip. Finally, I surrendered.

Continued on the next posting . . .