My presentation today concerns my struggle with two cancers and is in three parts:
- A purely clinical description of my condition and treatment;
- Why I consider my cancers to be my Buddhist friends;
- Some general observations and philosophical musings.
A clinical description of my cancers
I was diagnosed with terminal cancer (Stage IV, liver)* in September of 2012. Shortly thereafter, I was put on a chemotherapy regimen, but was told I would have only about 5 to 8 months to live. However, that was 17 months ago and my condition has been stable for the past nine months. I've seen CT scans of my liver, which looked just awful when I was first diagnosed. There were at least 16 dark spots, each the size of a dime, covering the entire liver. And that's just from the front-side view of that organ.
About nine months ago, a CT scan showed the cancer was 95% gone. Yes, there were still some stubborn dark spots, but even they were reduced in size. My oncologist was extremely pleased, saying I had responded extremely well to chemo. But, he added, my condition is terminal. So far, I've undergone 22 cycles of treatment, each consisting of 3 weeks. On the first Monday of each cycle, I would receive an IV plugged into my Power Port which would dose me with Cisplatin** and Gemcitabine***. The next Monday, I would be dosed only with Cisplatin; the third week would be a rest week in which I didn't get any medication.
My doctor told me that most patients are only able to tolerate between 6 to 8 of these three week cycles. At that time, their bodies would show signs of toxicity, in terms of outward physical manifestations and the presence of certain tell-tale markers in the blood. But I've undergone 22 cycles of treatment, without any of these signs. As it turns out, there's a reason for this which lies in my genetics. I have a defect referred to as BRAC 2 which made me susceptible to cancer in the first place but which, ironically enough, also made me a good candidate for these particular drugs.
There are two cancer markers my doctor looks at in my blood samples in order to evaluate how well my chemo is working. For marker CA 19-9 (RE: liver): My blood test on Jan. 7, 2013, showed a decline from 1349 on Dec. 4, 2012, to 296. To put that in perspective, my first blood test on Sept 29, 2012, showed a count of 15,256 - with a non-cancerous person typically weighing in from 0-35. For marker CEA (RE: colon): My highest count was in Sept. 2012 (182) and on Jan. 7, 2013, my count was 2.4. Normal is between 0 - 2.5. So...here I'm normal.
And the news kept getting better as each month passed. I've been within normal range for both of these markers for the past nine months. Now, that doesn't mean the cancer can't come roaring back to life. It might develop an immunity to my chemo drugs, forcing a switch to other drugs which aren't nearly as effective. Or my body might finally show signs of toxicity. It seems that Cisplatin in particular is a very horrible poison that does major damage to the body. So it might only be a matter of time until I fall prey.
I might also fall victim to a blood clot breaking loose in my right leg - where I have a condition called DVT (Deep Vein Thrombosis). I was told that was a frequent cause of death among patients in my condition. To minimize the danger of clots, I've been taking Warfarin (a blood thinner) ever since October, 2012. But that's a mixed blessing. If I'm taken off the blood thinner in order to, say, get a liver transplant, I'm at risk of a damaging blood clot going to my heart or lungs. If I stay on the blood thinner, I would bleed to death on the operating table during the transplant procedure.
As things stand now, I don't have much of an appetite but I haven't lost any weight. I'm still at 175 pounds, as I've been for about a year now. I still have all my hair and am not bedridden. I go out by myself just about everyday, and even shoveled snow with my son for 45 minutes about a week ago. I sleep a lot, though - up to 12 hours per day (off and on) - and feel weak and know I've lost muscle tone. My spirits are high and I enjoy talking to people - which I don't have much of an opportunity to do but feel a great uplift when it happens.
When I go to my chemo sessions, I see the other patients there - about 8 or so - and see a group of defeated, tired, withdrawn sad sacks. Sure, I have moments like that, but I've noticed it really helps to have a positive attitude. I haven't vomited for the past six months or so and when I go to the toilet, I haven't been constipated or suffered from diarrhea anywhere near as often as during my first eight months. I'm trying to walk more often, but in this particularly cold and snowy Chicago winter, it's been hard.
Overall, though, I feel pretty good, so I know I have a lot to be grateful for.
Cancer as my Buddhist friend
In Buddhism, at least as I've come to know it, there is a concept called "having a good friend." Simply put, a good Buddhist friend is anything or anybody that brings you closer to actively seeking enlightenment - but not only for yourself, for others as well. This "friend" could be someone or something actively seeking to do you harm. That might seem odd, but it is written that even devils have it in them to protect the Buddhist law, simply because they themselves - deep down inside - want to become buddhas.
I don't tell people "I'm dying of cancer," but instead say, "I'm living with cancer." Maybe it would be more accurate to say, "I'm wrestling with a cancerous condition," but that's a little too complicated for casual conversation. It's funny how I've been exposed to two very different movements that promised the possibility of an extremely long lifespan. I'm talking about millions of years in the same body. One of these movements was my year with Re-evaluation Counseling (or RC, for short). Their idea was that co-counseling was a tool that could rid you of the psychological baggage and traumas that were constantly undermining your health and vitality.
The other movement was Buddhist. Having compassion for all living beings is not only the prime point of Buddhism but is also responsible for determining the length of one's lifespan. That's right - the more you care for others and act upon such caring, the longer you live. I've outlived my oncologist's original prediction, but I want to go on and beat that by a couple of million years - at least. I want to go to my doctor's office for a review of my bloodwork and CT scan, and have him ask, "Okay, Steve, what did you do with the cancer? It's all gone - not a trace."
I'd like to say that my Buddhist practice was responsible. Moreover? I'd want him to believe that. As strange as it sounds, recovering from cancer will prove far easier than living without it. I'm 62-years old and don't have much in the way of financial resources. I live on my pension as a state civil servant - about $1900 per month - and I have about $4,500 in the bank. That's it - no stocks, no bonds, no property, no car, no investments. Over the past 15 months or so, I gave away about $10,000 to an out-of-state friend who is in far more desperate straits than I am. Frankly? I'm glad I had the opportunity to help and would do it again.
Some general observations and philosophical musings
For the past 17 months, I've walked the line between life and death. And I've come to appreciate both - especially to become unafraid of the latter. Sooner or later, death comes to us all. But so does rebirth - that's the hard part to embrace. I keep telling my son that I'll be back, so if I happen to pass on suddenly, that he should keep an eye open for any unusual or strangely familiar child he might "happen" to cross paths with. But if I don't come back to him - if my bodhisattva mission brings me to other places - I will always think of him. I hope I live long enough to see the twins (their first children) which he and his wife will be blessed with in September. But if not, I won't mourn that loss.
The Buddha once said, "I don't have it in my heart to love one or hate another." I hope to always have that sense of equanimity, hoping to expand my sense of compassion beyond the limits of love. My wish isn't so much to get to know my grandchildren but that they - somehow - encounter the writings I've posted on my blog. These are teachings and musings that I hope will benefit them and, hopefully, spare them from the pain of having to learn certain things I've had to learn the hard way. My hope in this regard extends to everybody - young and old.
I am humbled and awed by the loving kindness shown by my ex-wife. We were married for 20 years, separated for five, and divorced ten years ago. I was living in a friend's house when I was diagnosed. But she took me in, caring for me in her house for 15 months, until I recently moved into our son's house. Our divorce had a great and negative impact on her, which lasted for years. But I am glad I had the chance to live with her again and see how much she has grown as a human being.
Part of my condition has an upside - an ability to sense things others don't. Maybe they're too busy with the demands and trials of living in our contemporary society. So maybe that's blunted their senses. But I've acquired the ability to be stunned by the commonplace - a sunrise, a rock seemingly out of place on a sidewalk, a walk down the block, a deeply-drawn breath that has an unexpected ability to revitalize, an oddity in a movie which I'm sure no one else notices. I've always been sensitive to my surroundings, having worked most of my adult life to cultivate this. But my current condition has sharpened this sensitivity.
I noticed that I indulge in remembering past incidents in my life which were embarrassing or not well handled. "I could have done this," or "I could have said this"...you know, I woulda, coulda, shoulda. I am surprised at how often and with what clarity I would replay certain of these episodes in my mind. Maybe I was trying to learn as many lessons as I could, but I still find it remarkable. It is said that we shouldn't dwell in the past. Well, I hate to say it, but too many of us do exactly that - which is kind of like spinning our wheels.
I'm a bit disappointed in two of my Buddhist friends - those from my days as a member of the Soka Gakkai - who know of my condition, yet avoid me like the plague. It's not that I hunger for the company - far from it. I thrive far better than most in my times of solitude. My wish to see them is for their sake, not mine. A friend of mine who noticed my general aloofness toward the affairs of the world said, "You're not from around here, are you?" I knew what she meant and said, "No, but neither are you." She was a homeless person I met on the street, who I ended up living with for four years - off and on. We never had a romantic relationship but I found our connection to have been richly rewarding.
I have learned that you can find riches in the most unlikely of places. But having a conforming mind absorbed in the dramas of day-to-day life manages to rob most people of those riches.
A closing thought
I saw a reenactment of an explorer's deathwalk in a movie about an expedition to Antarctica. This was in the late 1800's and showed this man with his fellow explorers. But his feet were so badly frostbitten, he knew he was being a burden on his comrades who were trying to hike to safety. But he was only imperiling them by slowing them down. A snowstorm suddenly arose and the scene I saw was of him walking away from his comrades into the blinding curtain of snow, slowly disappearing from view as he hobbled away. He knew he was going to die and he knew what he had to do to give his friends a chance. I only hope that I can be that brave if it turns out that I have to be.
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Steven Searle, just another member of the Virtual Sangha of the Lotus and
former candidate for US President (in 2008 and 2012)
Contact me at bpa_cinc@yahoo.com
Footnotes
(Stage IV, liver)* - I also have colon cancer, but only to a far lesser extent than my liver cancer. Interestingly enough, these two cancers had arisen independently of each other, this not usually being the case.
Cisplatin** - http://en.wikipedia.org/wiki/Cisplatin
Gemcitabine** - http://en.wikipedia.org/wiki/Gemcitabine
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