Sunday, July 02, 2017

What might one learn from having cancer?

kw: book reviews, nonfiction, self help, cancer

When I saw The Cancer Whisperer: Finding Courage, Direction, and the Unlikely Gifts of Cancer by Sophie Sabbage, I wasn't sure what I would find, but I was hoping for a practical self help book. I think that is what this book is, but let me confess at the outset that I did not read the whole book: I read the Introduction and the first and last chapters in their entirety, and skipped here and there within the other 8 chapters.

I am certain this book is worth at least beginning to read, by anyone facing a new cancer diagnosis. You will know soon enough whether it suits your needs. I had cancer 17 years ago, died in the recovery room and had to be resuscitated, and fought a series of very different battles from those that Ms Sabbage describes. This was one reason I could not connect with the book's message.

The other primary reason I could not connect is that the writing style, though written in a self help style that is quite popular, simply puts me off. Sorry, Ma'am!

It is worthwhile to introduce the Compass concept, the subject of Chapter 1. In a diagram of an 8-point compass, the first item (the subject of Chapter 2) is at the top, and the subjects proceed clockwise around. They are, in order:

  1. Coming to Terms – a matter of balancing feelings and facts, and setting the boundaries you wish to preserve (such as those around work and relationships).
  2. Understanding Your Disease – learning all you can: more facts, the more the better. And here the author wisely tells (most of) us to avoid statistics, but I'll touch on this later.
  3. Knowing Your Purpose – to decide what you want and why, and establish a plan toward obtaining it.
  4. Stabilizing Your Body – prioritize actions such as changing eating habits.
  5. Clearing Your Mind – including building the support network you need when your own control slips, as it will from time to time.
  6. Directing Your Treatment – learn from your doctors, set your own priorities, and preserve your own integrity as a person not a disease. You may need help from your support network to lead your healing team, not just blindly following "what the doctors want". I'll have more on this below.
  7. Dancing With Grief – embrace grief; there are automatic losses, including the possible loss of your future. 
  8. Breaking the Shell – I am not totally sure, but this seems to entail "making friends" with your cancer to learn from it. Here we part ways. I am quite comfortable learning all I can from an enemy, all the while planning the most efficient way to totally eliminate it!

For many of us, the first in time will be 4…if we have time. In my case, I was working toward stabilizing a deteriorating situation for about two months before I had a cancer diagnosis. Once that occurred, I had no more than 8 days from diagnosis (Nov 22, 2000; the day before Thanksgiving!) to major surgery (Nov 30). I entered the hospital on Nov 27, and they took care of the stabilizing, because the doctor was not sure I could survive surgery. The bare facts:

  • Stage 3+ colon cancer, with a major mass visible in the colonoscope, about the size of my fist (I have big hands).
  • Nearly two months of enforced fasting due to intestinal blockage.
  • Loss of 25 pounds during 2 months.
  • Blood count of 8.5 and falling (15 is normal).

On Nov 27 I was placed in the hospice ward, and they began intravenous feeding. The normal "dose" is one 1-Liter bag of "lion milk" daily. I was given three bags daily. I was allowed a little walking around, steering my IV pole. I realized I was in the hospice when the message board outside all the other rooms said, "Comfort", while mine said "Comfort and Feed 3x". How many people do you know who spent 3-4 days in a hospice, and came out alive?

What led up to my diagnosis? I had a rather passive doctor. When I went to him with persistent pain that seemed to be near my stomach, he spent more than a month trying ulcer remedies and then an antibiotic. One day he said something like, "Maybe it would be a good idea to get a colonoscopy…at some point."—Appalling! At that point, I silently took charge (in the book's terms, I began directing my own treatment). I had been in the ER twice already with violent vomiting and bloody stools, and had overheard the ER doctor say, "There is a very high white blood count, but we can't find an organism." I was thinking, "Sounds more like cancer than an infection." Inside me I already had my diagnosis.

The next day, after the doctor had expressed puzzlement and made his immensely stupid statement, I went to the receptionist and innocently asked her, "He said something about seeing a gastroenterologist. Is there one he prefers?" She gave me a name. I had a fleeting thought that my inept doctor might have inept friends, but decided to give the man a try. In those days you needed a referral so I faked one. After a talk with that doctor's receptionist, she got me an appointment three weeks on. I'm not sure why I didn't immediately call some other GI doctors, but I didn't.

I made it through the 3 weeks (now it was 2 months since I had effective nourishment), and saw him on a Monday. He asked, "3 weeks? How'd you get in here so fast? My backlog is 3 months! Did you tell her you are bleeding?" I said, "Of course!" He said, "You're very pale" and took me right downstairs to a clinic that drew blood and determined my blood count was 8.5. He said, "Go to such-and-such a hospital at 7:00 AM on Wednesday and I'll meet you there." And on Wednesday the cancer was seen by my wife and me via the 'scope. But I was on Demerol and the memory didn't "take"; I had to be told about it after I came around.

Thanksgiving Weekend! What a time to suffer through telling my dear friends of my disease. They prayed for me. My wife and I had planned to go to a church conference for two days, so we went. It was just 2 hours away. There I told certain ones, who took the news to their churches so they could pray for me.

Early Monday I called my doctor. He called back saying he had a surgeon who would see me for "consultation" on Thursday. I hung up without a word, thought it over (chronic pain level had reached 8 and I had to think very slowly and thoroughly). I called him back and said, "I won't live that long." He said, "Go to the ER now. I'll call ahead that you are coming." Thus began 3 nights in a hospice, 9 days of IV feeding in 3 days, an an operation on the same Thursday that was going to be a "consultation." I was in the OR 5 hours. In the recovery room they put in an epidural to administer Morphine. It turns out I am over-sensitive to Morphine and I stopped breathing. My heart slowed to about 30/minute (any slower and it'll simply stall and stop). A nurse stood by with defibrillator paddles as another gave me mouth-to-mouth and then oxygen. Once the morphine wore off, they tapered off the oxygen and let my wife see me. After that I suppose I recovered as normally as one can.

That's enough on such a subject in this much detail. I followed up with chemotherapy. The GI doctor was frank enough to give me accurate statistics. In my case, being a mathematician, I knew exactly what they were telling me and what they were not telling me. He said, after the operation, I had a 15% chance of living for one year. After the "gold standard" chemotherapy for six months, that chance would improve to 35%. "Gold standard" is leukovorin plus 5-FU. 5-FU was originally developed as a "weapon of mass destruction", but was found, rather accidentally, to cure many cases of colon cancer. Leukovorin helps it work better.

And what does 35% mean? Survival rates in such cases follow the same statistics as failure rates in a transistor factory. Technically, it is a type of Weibull distribution. At some time 65% of the devices will have failed. The doctor's prediction put that point at one year, when 35% are still alive. Such a distribution has a very long tail such that, for example, about 10% survive for five years. In the case of colon cancer, there is very little chance of recurrence after five years, and different statistics come into play. Most folks who live for five years after colon cancer surgery will die of something besides colon cancer, 10, or 20, or 30-40 years later, depending on their original life expectancy. In my case, I was 53 at the time of my operation (pretty young for this kind of cancer), and now I am just a couple of months shy of being age 70. My father is alive, so I have some chance of living into my 90's, at least medically speaking. The last time I saw the GI doctor (he does a follow-up colonoscopy every 3 years), he called me "a trophy".

Looking back at the list above, I think I covered most of the bases of the Compass. The one thing I'd have added, perhaps as a part of "Dancing With Grief", or perhaps as a ninth point: "Laugh as much as possible". For some reason, the six months of my chemotherapy were the longest sustained period of great happiness of my life. Perhaps 5-FU has a side effect of being a superb anti-depressant (too bad about losing your hair if you are young; I didn't lose any). I also stumbled on AFV (America's Funniest Videos) on ABC, and have watched it pretty regularly every since. My kind of humor.

Considering that this is not a very popular blog, I conclude that few people think the way I do or like many of the things I like. So, while I was not so enamored by this book, I think it can help a great many people either to become cancer survivors, or to muddle their way through their cancer experience better than they might have done if left totally to their own devices.

No comments: