Monday, January 15, 2007

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


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

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

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

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

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

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

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

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

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

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

Sunday, January 14, 2007

Another Damned Spot?

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

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

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

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

Saturday, January 13, 2007

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

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

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

When I thought I would die quickly, I

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

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

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

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

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

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

Monday, January 08, 2007

Sunsets and Visualization




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

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

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

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

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

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

Friday, January 05, 2007

Gratitude and Impatience

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

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

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

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

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

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

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

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

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

Tuesday, January 02, 2007

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

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

In no particular order . . .

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

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

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

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

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

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

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

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

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

Monday, January 01, 2007

A New Year

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

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

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

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

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

Saturday, December 30, 2006

A Medical Update - My Gallbladder Cancer

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

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

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

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

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

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

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

Thursday, December 28, 2006

Combating the Loneliness of a Rare Cancer

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

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

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

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

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

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

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

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

Monday, December 25, 2006

Making Christmas Memories



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

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

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

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

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

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

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

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

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

Friday, December 22, 2006

Today, I Don't Want to Know

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

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

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

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

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

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

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

Thursday, December 21, 2006

Shortest Day - Longest Night of the Year



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

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

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

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

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

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

Friday, December 15, 2006

Vitamin D, UV-B Sunlight and Gallbladder Cancer

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

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

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

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

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

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

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

Monday, December 11, 2006

Expectations

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

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

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

Receive all people as beautiful exactly as they are.

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

Create your own reality consciously.

Provide others with opportunities to give.

Have no expectations, but rather abundant expectancy.

Problems are opportunities.


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

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

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

Thursday, December 07, 2006

That damn spot was Cancerous!

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

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

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

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

Tuesday, December 05, 2006

Feeling my anger and other feelings . . .

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

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

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

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

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

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

Monday, December 04, 2006

Spot, Gone!

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

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

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

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

Tuesday, November 28, 2006

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.

Wednesday, November 22, 2006

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!

Sunday, November 19, 2006

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.