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.
Showing posts with label rare cancer. Show all posts
Showing posts with label rare cancer. Show all posts
Thursday, December 28, 2006
Tuesday, October 03, 2006
"Body Worlds" Exhibit viewed by a Person with Cancer
Today I went to see the Body Worlds exhibit (An Anatomical Exhibition of Real Bodies, using a preservation technique called plastination) at the Boston Museum of Science. I took a class of freshmen in a seminar focusing on self and identity, and so I went as a teacher, professor, and also as a learner. When I arrived, I found myself viewing the amazing bodies of the exhibit through the lens of a person with cancer.
Before I say more about that, I want to also say that I felt privileged to see what's inside our bodies in an amazing, graphic, way. I felt initiated into the inside of the human body in a way that has traditionally been available only to medical students, doctors, nurses, and others in the medical profession.
Having said that, I was aware from first stepping into the exhibit that I was looking for information about my own body, not just participating in an abstract exercise. Looking at bones first, I checked out the fibula, to see a representation of my ankle broken last winter, looking for an ankle which carries a metal plate and six screws that poke a little out of the bone, just like mine. They showed metal joint replacements, but no metal plates stabilizing broken bone. In one part of the exhibit, there was a body with nerves exposed, from head to toe, including nerves across the foot that must be the ones that sometimes tingle next to and down from those stabilizing screws.
The internal organs come a little later. I saw lungs and liver, stomach and kidneys, and finally a gallbladder, even one with gallstones. I saw livers with cancer metastisized in multiple spots across the organ, and I saw cross sections of cancerous lungs with tumors, some small, some large. I saw brain tumors and breast tumors. I didn't see a cancerous gallbladder, or a cancerous bile duct, but of course these are both rare cancers. I wanted to see the relationship of all of these internal organs to each other, to see where they fit together, how the gallbladder is tucked up under the liver, how big the liver is in relation to many of the other organs in the area.
There were a lot of smokers' lungs, some with cancerous tumors. Last week in his blog, Leroy talked about not wanting to "police" the behavior of other people, not wanting to be their moral guardian. He doesn't choose to criticize someone who smokes for example (although he does think they should quit!). I have to admit that I was pleased to see many samples of smokers' lungs, for my college students and others who smoke. If none of my students smoke, they would be an unusual class, as in the last few years I have found at least a handful of smokers among the young adults in every class. The lungs of smokers were dark and discolored, and looked very unhealthy and very different from the healthy lungs.
Going to the exhibit, I expected to be informed and educated. I didn't expect to be engulfed by feelings and thoughts and worry about my cancer, my body, my still cancerous bile duct. I wouldn't have missed the exhibit, but I would have enjoyed it more a year ago when I wasn't looking for signs of cancer, signs of internal organs not doing their job because of cancer.
Before I say more about that, I want to also say that I felt privileged to see what's inside our bodies in an amazing, graphic, way. I felt initiated into the inside of the human body in a way that has traditionally been available only to medical students, doctors, nurses, and others in the medical profession.
Having said that, I was aware from first stepping into the exhibit that I was looking for information about my own body, not just participating in an abstract exercise. Looking at bones first, I checked out the fibula, to see a representation of my ankle broken last winter, looking for an ankle which carries a metal plate and six screws that poke a little out of the bone, just like mine. They showed metal joint replacements, but no metal plates stabilizing broken bone. In one part of the exhibit, there was a body with nerves exposed, from head to toe, including nerves across the foot that must be the ones that sometimes tingle next to and down from those stabilizing screws.
The internal organs come a little later. I saw lungs and liver, stomach and kidneys, and finally a gallbladder, even one with gallstones. I saw livers with cancer metastisized in multiple spots across the organ, and I saw cross sections of cancerous lungs with tumors, some small, some large. I saw brain tumors and breast tumors. I didn't see a cancerous gallbladder, or a cancerous bile duct, but of course these are both rare cancers. I wanted to see the relationship of all of these internal organs to each other, to see where they fit together, how the gallbladder is tucked up under the liver, how big the liver is in relation to many of the other organs in the area.
There were a lot of smokers' lungs, some with cancerous tumors. Last week in his blog, Leroy talked about not wanting to "police" the behavior of other people, not wanting to be their moral guardian. He doesn't choose to criticize someone who smokes for example (although he does think they should quit!). I have to admit that I was pleased to see many samples of smokers' lungs, for my college students and others who smoke. If none of my students smoke, they would be an unusual class, as in the last few years I have found at least a handful of smokers among the young adults in every class. The lungs of smokers were dark and discolored, and looked very unhealthy and very different from the healthy lungs.
Going to the exhibit, I expected to be informed and educated. I didn't expect to be engulfed by feelings and thoughts and worry about my cancer, my body, my still cancerous bile duct. I wouldn't have missed the exhibit, but I would have enjoyed it more a year ago when I wasn't looking for signs of cancer, signs of internal organs not doing their job because of cancer.
Tuesday, August 08, 2006
How Did I get Here?
I haven't actually met someone else who's been diagnosed with gallbladder cancer (GBC), but I have read some stories in blogs and on discussion boards about the experiences of others. My initial questions about someone else with this diagnosis focus on how and why the disease was diagnosed, and how they have been doing since the diagnosis. I mention some of the details of my experience in my first post, but want to say more.
Before surgery, I had no pain and my only symptoms were funny colored urine and itching. A week after the symptoms began, I saw my doctor, and by then some jaundice was visible. I had an abdominal ultrasound which revealed stones in my gallbladder (not a surprise as many family members have had stones and had their gallbladders removed), but no indication of why my bile duct was blocked. The doctors attempted an ERCP (Endoscopic Retrograde Cholangiopancreatography) the next day, but could not clear the blockage, and in fact were unclear about the cause of the blockage. A CT scan two days later revealed little more, a second ERCP was attempted, again unsuccessfully, and then surgery was performed, at first laparoscopically, and then with a full incision. The surgeon could tell that I had cancer in my bile duct; he performed a bypass, removed my gallbladder, and took samples of other tissue for testing. Pathology tests performed after the surgery revealed that the cancer originated in the gallbladder, and had spread to some surrounding tissue (besides the bile duct), meaning that I have State IV gallbaldder cancer. It's a grim diagnosis.
The cancer is rare, affecting 3,000 to 7,500 people in the United States with a new diagnosis during this year. (The numbers vary somewhat depending on which website you go to, but the numbers are very low given the total number of people in the U. S. right now.) Many people survive only 2-6 months following the diagnosis. Some folks seem to make it longer (and I'm determined to be one of those), but it's not clear what percentage do well over more time, and whether or not one of the new drugs being used for GBC are making a real difference over time in quantity and quality of life.
Since the surgery and the diagnosis of GBC, I have been recovering from the surgery and dealing with many responses to the diagnosis (more about that another day). In mid-July I had another CT scan and bloodwork. My cancer marker was down, and there was nothing in my (clearly rearranged by surgery) abdomen to indicate that beginning chemotherapy made sense then. I am feeling amazingly well, and waiting until I feel bad or the spread of the cancer shows up on a CT scan to begin therapy.
Before surgery, I had no pain and my only symptoms were funny colored urine and itching. A week after the symptoms began, I saw my doctor, and by then some jaundice was visible. I had an abdominal ultrasound which revealed stones in my gallbladder (not a surprise as many family members have had stones and had their gallbladders removed), but no indication of why my bile duct was blocked. The doctors attempted an ERCP (Endoscopic Retrograde Cholangiopancreatography) the next day, but could not clear the blockage, and in fact were unclear about the cause of the blockage. A CT scan two days later revealed little more, a second ERCP was attempted, again unsuccessfully, and then surgery was performed, at first laparoscopically, and then with a full incision. The surgeon could tell that I had cancer in my bile duct; he performed a bypass, removed my gallbladder, and took samples of other tissue for testing. Pathology tests performed after the surgery revealed that the cancer originated in the gallbladder, and had spread to some surrounding tissue (besides the bile duct), meaning that I have State IV gallbaldder cancer. It's a grim diagnosis.
The cancer is rare, affecting 3,000 to 7,500 people in the United States with a new diagnosis during this year. (The numbers vary somewhat depending on which website you go to, but the numbers are very low given the total number of people in the U. S. right now.) Many people survive only 2-6 months following the diagnosis. Some folks seem to make it longer (and I'm determined to be one of those), but it's not clear what percentage do well over more time, and whether or not one of the new drugs being used for GBC are making a real difference over time in quantity and quality of life.
Since the surgery and the diagnosis of GBC, I have been recovering from the surgery and dealing with many responses to the diagnosis (more about that another day). In mid-July I had another CT scan and bloodwork. My cancer marker was down, and there was nothing in my (clearly rearranged by surgery) abdomen to indicate that beginning chemotherapy made sense then. I am feeling amazingly well, and waiting until I feel bad or the spread of the cancer shows up on a CT scan to begin therapy.
Sunday, August 06, 2006
A Life Changing Diagnosis
Receiving a diagnosis of terminal cancer is a life changing event; it certainly was for me, two months ago. Since then, I have worked hard to gather information aboout gallbladder cancer, and because it is rare, the information has been difficult to come by. One purpose for me in writing this blog is to share information gained, including links to sites on the web which have been productive and helpful. A second purpose, quite different but related, is to share my thoughts on the spiritual journey of receiving a terminal diagnosis. Perhaps this cancer will not kill me, but the odds are not in my favor.
The cancer in my gallbladder was discovered when my bile duct blocked, the bilirubin began to build in my body, and the blockage could not be cleared endoscopically. Surgery removed my gallbladder, revealed cancer in my bile duct, and provided a bypass for my bile duct; subsequent pathology reports indicated that the origin of the cancer was my gallbladder. I have recovered well from the surgery, and so have not begun chemotherapy, but there is a clear medical consensus that only chemotherapy will slow the progression of the disease. So, I will begin chemo when tests indicate that the cancer has begun to spread.
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? These are questions I have been asking for the past two months. In asking them, I have also noticed how little guidance there is for this process. Who have I known personally who was able to anticipate their death? I can think of only two individuals, and I never asked them whether or not they were living differently in their awareness of their mortality.
So, those are the themes in this blog. I look forward to a dialog with those I know, and those I don't about this strange, life changing journey.
The cancer in my gallbladder was discovered when my bile duct blocked, the bilirubin began to build in my body, and the blockage could not be cleared endoscopically. Surgery removed my gallbladder, revealed cancer in my bile duct, and provided a bypass for my bile duct; subsequent pathology reports indicated that the origin of the cancer was my gallbladder. I have recovered well from the surgery, and so have not begun chemotherapy, but there is a clear medical consensus that only chemotherapy will slow the progression of the disease. So, I will begin chemo when tests indicate that the cancer has begun to spread.
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? These are questions I have been asking for the past two months. In asking them, I have also noticed how little guidance there is for this process. Who have I known personally who was able to anticipate their death? I can think of only two individuals, and I never asked them whether or not they were living differently in their awareness of their mortality.
So, those are the themes in this blog. I look forward to a dialog with those I know, and those I don't about this strange, life changing journey.
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