I’m pretty freaking lucky. Sometimes in a gruesome way, however. One of those ways is the way my cancer was discovered in 2006. The short version is this sequence of events:
1. A kidney stone forms in my urinary tract.
2. I pass said kidney stone.
3. Not being an imbecile, I see my doctor, who schedules a CT scan
4. CT scan reveals I have ruptured my appendix; emergency surgery follows.
5. During the surgery, an unexpected mass is found in my abdominal cavity near the appendix. The mass is removed and sent for testing. The tests come back malignant.
So, in a span of a few days I went from being an annoying, overweight white guy to passing a kidney stone and breaking my appendix, to being diagnised with cancer.
Everything changed. For a while. I quickly experienced a range of emotions and discoveries, including an unprofessional oncologist and a surprisingly compassionate insurance company, but in the end I escaped major surgery and got to keep my hair.
Turns out I’m lucky, really lucky. My cancer was fond during surgery and oh-by-the-way I not only live in a city with one of the leading research centers on cancer, my surgeon sent my tissue samples to MDA for the initial tests.
I revisted my situation after reading about Christopher Hitchens’ own battle with cancer. It’s clear we are very different men. Mr. Hitchens is a very successful writer who has had to deal with a much harder situation than I have had to face. And yet, he too seems to be luckier than some. In my visits to MDA, I regularly see patients and their families, who are facing a much bleaker prognosis than even Mr. Hitchens has had to endure. And knowing this, I regularly face a kind of survivor’s guilt about my own good fortune. No major surgery, no chemo, no nausea, while everywhere I meet and see patients whose future is unknown, who must endure pain and doubt and the threat of death, and whose families suffer along with them. I want to help somehow, but I feel very helpless, and sometimes as if I’m wasting the time and resources of the doctors and nurses who should be focusing on people who really need help.
I have felt well for so long that by mid-2009 I began to worry that I did not have cancer at all. My oncologist ended that idea by showing me exactly where my tumors are residing; just because they’re not causing trouble at the moment does not mean they aren’t there. So while I feel like a normal person, my doctors make sure I never forget that I’m not just like anyone else. And because PMP is rare, with an unknown cause and with a very limited amount of clinical research available, there’s no guarantee that my present well-being will be permanent. That leads to some concern every time I have an unexplained pain in my abdomen or difficulty in urination or defecation. I find myself swinging from thinking that I’m overreacting, to worrying that I’m not telling my doctors something they need to know. This is important for another reason – since my cancer was found early, the doctors have been keeping records on me in hopes of learning more about PMP in the early stages. I can’t say that I’m doing much to help, but it’s better than nothing and just maybe something will come up that will help someone.
My point here is threefold – sometimes I need to vent, first of all. Second, never assume things will always be what you expect them to be, and three, there’s a reason for everything but that doesn’t mean everything will make sense when you try to figure it out.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Monday, August 09, 2010
Thursday, January 28, 2010
“The Tumor Markers are Unchanged”
Yesterday, I went in for my now semi-annual check at M.D. Anderson. Generally, things are going well, except for the new insurance company. It’s bad enough that I got laid off by my old company, but the new job meant new medical insurance, and as some folks predicted it’s not a patient-friendly company. But that’s for another time, perhaps.
Dr. Mansfield was, as before, cautiously optimistic. What had been four visits a year was dropped to two a year after my visit in July, and Dr. Mansfield told me that he saw pretty much the same thing as last time.
“The tumor markers are unchanged”, was how he began. After seeing the blank expression on my face, he explained for a couple minutes that my condition in general was unchanged, which in cancer terms is good. Actually, I’m doing very well, certainly more than I have a right to expect. It appears that my little floating bio-bombs started an uprising back in 2006, got cleaned out for the most part when Dr. Thomas did my surgery in November of that year, and have basically contented themselves to just float around and lurk in my hydroperitoneum. They are still there, just floating about and hard to detect and count except for a cyst on my spleen, not messing with my blood cell count or any of the things that indicate metastasization. As usual, my blood pressure is a little high, even with taking my Exforge, and I carry around a bit more belly than I like, because of a bit of extra fluid. But nothing really serious. Just take my medicine and do my visits, sometimes to my primary doctor and sometimes to MDA.
Oddly, that’s one reason I hate these visits to MDA. I feel like I have no business going in for tests and consultations when I’m not going through any of the things most cancer patients have to endure. I have not had to go through Chemo, no radiation treatment, I got to keep all of my hair, have not had nausea in a very long time. I sit in the waiting room for my tests and doctor visits and feel horrible, partly for how much pain and suffering I see, and partly for the fact that I don’t fit. Of course, my wife would be upset with me if I sounded like I wanted to go through all those things, and I understand – mentally at least – that there is no shame in having caught my cancer early, that my visits are necessary to make sure it has not come back, and my doctors remind me every so often that because the cause of PMP remains unknown, what causes it to metastasize is still unknown, and because my condition is unusual – the cancer having been caught early because I ruptured my appendix – I represent an opportunity for learning more about the thing and MDA is a part of UT Medical Branch and therefore a teaching hospital, that it’s important, a good thing, that I come in for these visits.
Still.
Why was I lucky, but so many others are not? Why can’t I do something that actively helps other cancer patients?
And of course, at the back of all of that, there is that little knowledge that while on the one hand I get to enjoy a comfortable lifestyle and good reports that the nasty little cells are still at bay, there is no way to know what will happen in a couple years, much less later on. The first incident came out of nowhere and the cause of PMP has never even been suspected, and while they are not growing, neither have the tumors gone away. You can’t kill them with drugs or chemicals because they don’t act like any other known form of cancer, you can’t find them all and flush them away, they are there and always will be, floating inside your abdominal walls unless and until they decide to attack you. Makes them sound like a tiny pack of bacterial wolves, I guess, but the point is that while they are well-behaved little cancers in my case, they are a bunch of tiny little microscopic things that don’t belong in me but I have to live with them for the rest of my life.
My point? I don’t have one, really. I just needed to rant, to give voice to worries and some irrational thoughts that nonetheless needed exercise and expression. To express a sense of being an outsider, both from the community of cancer patients and yet also unable to deny my cancer, either.
I’ve been called lucky. I understand why, but I still don’t feel lucky. Not about this.
Just tired. Frustrated. And mad at myself for being this way when others have it so much worse than I could ever imagine.
Some days I can’t find easy answers, is all.
Thanks for your patience.
Dr. Mansfield was, as before, cautiously optimistic. What had been four visits a year was dropped to two a year after my visit in July, and Dr. Mansfield told me that he saw pretty much the same thing as last time.
“The tumor markers are unchanged”, was how he began. After seeing the blank expression on my face, he explained for a couple minutes that my condition in general was unchanged, which in cancer terms is good. Actually, I’m doing very well, certainly more than I have a right to expect. It appears that my little floating bio-bombs started an uprising back in 2006, got cleaned out for the most part when Dr. Thomas did my surgery in November of that year, and have basically contented themselves to just float around and lurk in my hydroperitoneum. They are still there, just floating about and hard to detect and count except for a cyst on my spleen, not messing with my blood cell count or any of the things that indicate metastasization. As usual, my blood pressure is a little high, even with taking my Exforge, and I carry around a bit more belly than I like, because of a bit of extra fluid. But nothing really serious. Just take my medicine and do my visits, sometimes to my primary doctor and sometimes to MDA.
Oddly, that’s one reason I hate these visits to MDA. I feel like I have no business going in for tests and consultations when I’m not going through any of the things most cancer patients have to endure. I have not had to go through Chemo, no radiation treatment, I got to keep all of my hair, have not had nausea in a very long time. I sit in the waiting room for my tests and doctor visits and feel horrible, partly for how much pain and suffering I see, and partly for the fact that I don’t fit. Of course, my wife would be upset with me if I sounded like I wanted to go through all those things, and I understand – mentally at least – that there is no shame in having caught my cancer early, that my visits are necessary to make sure it has not come back, and my doctors remind me every so often that because the cause of PMP remains unknown, what causes it to metastasize is still unknown, and because my condition is unusual – the cancer having been caught early because I ruptured my appendix – I represent an opportunity for learning more about the thing and MDA is a part of UT Medical Branch and therefore a teaching hospital, that it’s important, a good thing, that I come in for these visits.
Still.
Why was I lucky, but so many others are not? Why can’t I do something that actively helps other cancer patients?
And of course, at the back of all of that, there is that little knowledge that while on the one hand I get to enjoy a comfortable lifestyle and good reports that the nasty little cells are still at bay, there is no way to know what will happen in a couple years, much less later on. The first incident came out of nowhere and the cause of PMP has never even been suspected, and while they are not growing, neither have the tumors gone away. You can’t kill them with drugs or chemicals because they don’t act like any other known form of cancer, you can’t find them all and flush them away, they are there and always will be, floating inside your abdominal walls unless and until they decide to attack you. Makes them sound like a tiny pack of bacterial wolves, I guess, but the point is that while they are well-behaved little cancers in my case, they are a bunch of tiny little microscopic things that don’t belong in me but I have to live with them for the rest of my life.
My point? I don’t have one, really. I just needed to rant, to give voice to worries and some irrational thoughts that nonetheless needed exercise and expression. To express a sense of being an outsider, both from the community of cancer patients and yet also unable to deny my cancer, either.
I’ve been called lucky. I understand why, but I still don’t feel lucky. Not about this.
Just tired. Frustrated. And mad at myself for being this way when others have it so much worse than I could ever imagine.
Some days I can’t find easy answers, is all.
Thanks for your patience.
Thursday, July 30, 2009
My Survivor Guilt
In late 2006, I was diagnosed with a rare form of cancer, Pseudomyxoma Peritonei, or PMP for short. PMP is a rare form of abdominal cancer, free-floating cells which grow in size and block the transfer of fluid throughout the abdominal cavity, and when the cells metastasize the cancer attacks multiple internal organs, either through . The nature of the cancer is such that normal warning signs simply do not appear; the only early warning signs of PMP are high blood pressure, weight and water gain, and sluggish body movements.
Those signs are also symptoms of simply being overweight, which is far more common and far less serious. Consequently, victims of PMP usually become aware of the cancer only when it begins to attack internal organs, at which time the chances of survival plummet. A study by the National Institute of Health said PMP patients have a 1-year survival rate of 98%, but a 5-year survival rate of just 53%, and a 10-year survival rate of only 32%. That study is a bit dated now, but it does give you a sense of how serious this cancer is to the people who must fight it.
An account of how one patient in Canada fought PMP may be read here. And I applaud Steve's courage and candid account of his fight.
In short, no one really knows what causes PMP, why it floats around loose in the abdominal cavity, what causes it to go from relatively harmless to aggressively life-threatening, or why some cases are discovered early but most only when it is too late. PMP is a damnable thing to have to face.
And this is why I feel guilty. I went in to M.D. Anderson yesterday for more tests and evaluations, and today I spoke with Paul Mansfield, the doctor who is in charge of my case and one of the top four or five experts in PMP. My tumors have not grown for more than two years, and all in all things are going very well for me. So well in fact, that I began to wonder if I had not been misdiagnosed, that maybe I did not in fact have cancer. Dr. Mansfield, along with the Colorectal Cancer team at MDA, assure me that I do indeed have PMP, but for me the cancer is strangely quiescent, not growing or making any signs of threat to my health or well-being. The cancer is not gone, but it’s not attacking me either. It’s like walking past a neighbor’s house every morning, and a gun is always pointed at me but never fired.
Why?
Why do I have a cancer that most people have never heard of? And why have I been blessed by having a cancer that only threatened me for a short time, never actually putting my life in real danger, when so many others are killed by the thing, or put through months of hellish suffering?
I never deserved to have cancer. At the same time, there are many people with cancer who deserved my good fortune far more than I do. I hate the trips to MDA, because I almost feel that I have no business being there, next to people who have suffered so much because of their cancer, while mine has cost me so little up to now. I know in my head that I should be grateful, especially for my wife and daughter who worry about me and who had a much harder time when I had my last operation than I did. But in my heart I do not wish to suffer, but I wish I could help the others suffer less – it feels wrong to be so helpless to help the others.
I stopped writing to my PMP Patient forum. I could not bring myself to write about my health and well-being, when so many of my fellow patients were suffering from slow recuperation, and so many lost their battles.
So damned many.
I don’t know why I have been spared. I don’t know what to do.
M.D. Anderson has started a study of the disease, having received permission from an Institutional Review Board (IRB) to do so, and I will be participating with whatever I can contribute. At least I can feel like I am doing something to help, though it’s small steps in a long journey.
Those signs are also symptoms of simply being overweight, which is far more common and far less serious. Consequently, victims of PMP usually become aware of the cancer only when it begins to attack internal organs, at which time the chances of survival plummet. A study by the National Institute of Health said PMP patients have a 1-year survival rate of 98%, but a 5-year survival rate of just 53%, and a 10-year survival rate of only 32%. That study is a bit dated now, but it does give you a sense of how serious this cancer is to the people who must fight it.
An account of how one patient in Canada fought PMP may be read here. And I applaud Steve's courage and candid account of his fight.
In short, no one really knows what causes PMP, why it floats around loose in the abdominal cavity, what causes it to go from relatively harmless to aggressively life-threatening, or why some cases are discovered early but most only when it is too late. PMP is a damnable thing to have to face.
And this is why I feel guilty. I went in to M.D. Anderson yesterday for more tests and evaluations, and today I spoke with Paul Mansfield, the doctor who is in charge of my case and one of the top four or five experts in PMP. My tumors have not grown for more than two years, and all in all things are going very well for me. So well in fact, that I began to wonder if I had not been misdiagnosed, that maybe I did not in fact have cancer. Dr. Mansfield, along with the Colorectal Cancer team at MDA, assure me that I do indeed have PMP, but for me the cancer is strangely quiescent, not growing or making any signs of threat to my health or well-being. The cancer is not gone, but it’s not attacking me either. It’s like walking past a neighbor’s house every morning, and a gun is always pointed at me but never fired.
Why?
Why do I have a cancer that most people have never heard of? And why have I been blessed by having a cancer that only threatened me for a short time, never actually putting my life in real danger, when so many others are killed by the thing, or put through months of hellish suffering?
I never deserved to have cancer. At the same time, there are many people with cancer who deserved my good fortune far more than I do. I hate the trips to MDA, because I almost feel that I have no business being there, next to people who have suffered so much because of their cancer, while mine has cost me so little up to now. I know in my head that I should be grateful, especially for my wife and daughter who worry about me and who had a much harder time when I had my last operation than I did. But in my heart I do not wish to suffer, but I wish I could help the others suffer less – it feels wrong to be so helpless to help the others.
I stopped writing to my PMP Patient forum. I could not bring myself to write about my health and well-being, when so many of my fellow patients were suffering from slow recuperation, and so many lost their battles.
So damned many.
I don’t know why I have been spared. I don’t know what to do.
M.D. Anderson has started a study of the disease, having received permission from an Institutional Review Board (IRB) to do so, and I will be participating with whatever I can contribute. At least I can feel like I am doing something to help, though it’s small steps in a long journey.
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