Emerging from the valley of the shadow

 kw: book reviews, nonfiction, memoirs, cancer, cancer survival, cancer treatment

Beating cancer takes a powerful team. Of course, we need doctors: surgeon, oncologist, radiologist, and so forth. It also takes committed family and friends. What I went through late in 2000 and for the next six months was pretty rough. A highly expert surgeon rearranged my insides, removing a couple of feet of colon and a foot of ileum and fat containing more than forty lymph nodes. An oncologist who had been dubbed "the one I would go to" by most of the local physicians put me through six months of chemotherapy. Then I had five years of annual colonoscopies and CT scans and quarterly blood tests. Since then I've had a colonoscopy every three years, until recently the gastroenterologist said, "There were no polyps, this time or last. You can wait five years this time. I guess that is as close to cured as one can get.

Clea Shearer had breast cancer, and while her experiences were not the worst possible (short of dying), they were worse than many and much more difficult than mine. She relates her experiences in Cancer is Complicated: And Other Unexpected Lessons I've Learned. Where my chemo substance, 5FU, can cause nausea and hair loss, in my case I had neither, but rather six months of being in a good mood almost all the time. I remarked to a friend, "5FU is the best antidepressant ever!" Clea was given a substance they call Red Devil, and it could only be used at two-week intervals, sometimes three; it was that debilitating. Once she was somewhat recovered, she also underwent a series of radiation treatments that left her with burns that took months to heal.

Guess what? She got through it. As she tells us, her husband, her children, her mother (who spent most of the saga with her constantly), several friends—some she was able to see face-to-face, and more via phone or video calling—and the loving care of quite an array of surgical and oncological nurses, all upheld her and encouraged her at every stage.

I also have quite a social and church support system, but I think Clea has me beat hands down in that department.

Many take this verse as symbolic: "Even though I walk through the valley of the shadow of death, I do not fear evil, for You are with me." (Psalm 23:4) Although it symbolizes the death and resurrection of Jesus, to David the psalmist it reflected a harrowing experience that he had survived. It gives comfort to us also, when we pass through a harrowing experience. I created this image in Leonardo AI's Flow engine, to show that we don't pass through alone, and that there is "light at the end of the tunnel" that is not an oncoming train but a doorway to a renewed life.

Clea is in the fourth year of a ten-year follow-up regimen of tests and hormone treatments; her tumor was hormone sensitive. At age 44 (according to Wikipedia), she is a little more than half my age. May she live a long and increasingly pain-and-disability free life! She intends her book to encourage not just women with breast cancer and recent survivors, but all cancer patients: Cancer is indeed complicated, but that is because we are complicated. Our doctors have their work cut out for them, figuring which approach will work to rescue us, with our unique biochemistry, in the face of a disease that is equally complicated.

I am very thankful I read this book.

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.

Converting a cancer to a treatable chronic condition

kw: book reviews, nonfiction, medicine, cancer, genetics

In 2001 a new cancer drug, the first genetically-informed, targeted therapy agent, was approved in the US, Gleevec (or Glivec overseas). It was initially created to turn CML, Chronic Myeloid Leukemia, from a certain sentence of death into either a curable condition or one that a patient could live with. The substance has proven useful for several leukemia varieties and four or five other cancer syndromes. It works by deactivating a kinase (an energy transfer protein) that runs wild due to a specific genetic error. To date, it is the only targeted therapy substance that is anywhere near so effective. Patients who can tolerate the side effects (hey, if death is the alternative, I could tolerate a lot!) are not cured, but can live with the cancer for many, many years.

The chain of circumstance that led to Gleevec is exceptionally complex and convoluted, and the story is well told in The Philadelphia Chromosome: A Mutant Gene and the Quest to Cure Cancer at the Genetic Level by Jessica Wapner. The Philadelphia chromosome was first seen in 1959. This refers to a shortened chromosome 22, and later it was found that the missing piece gets moved to the end of chromosome 9. The result is that two genes (or more accurately, protein coding regions) get jammed together and produce a very oversized kinase that ramps up cell energy use and turns it into a malignant cancer. Gleevec plugs the active site of the kinase, effectively silencing it. Cells that contain the mutation soon die.

I did not count, but many, many people were involved during the 42 years from the discovery of the abnormality until a clinical substance was produced and accepted for treatment by the FDA. I got this impression: something like 200 talented people putting together a 100,000 piece puzzle, where they first have to scour the countryside to find the pieces. And during final stages of the clinical trials, about a metric ton of the agent had to be produced to treat hundreds, then thousands, of patients for several months.

It is a good thing that Gleevec is useful for several conditions. The initial market for it was just a few thousand people. It was really hard for the researchers to get company buy-in to test the drug because it seemed they'd never recoup the research costs (say, a quarter billion dollars). As it is, staying alive with CML and its sister conditions costs more than $90,000 per year. This is the epitome of something Lewis Thomas once wrote about, that prevention is dirt cheap, most cures range from kinda cheap to affordable, but chronic care will break the bank.

Ms Wapner writes that the story has more characters than a Russian novel. That may be an understatement. I suspect Gleevec is the low-hanging fruit of genetic therapies, however. It involves a mutation you can see in a light microscope, and a protein that is comparatively easy to plug up. Cancer is proving a very tough, and costly!, nut to crack.

A fungus was among - me

kw: alternative medicine, cancer, fungi

A relative loaned me a DVD, a documentary about nine treatments that are purported to cure cancers. I watched it a few weeks ago, and from time to time I wonder about some of them. But there is one that I am sure is not so.

An Italian doctor claims that cancers all begin as fungus infections, and are largely composed of fungus. He has written a book about it with the title Cancer is a Fungus. I just Googled "cancer is a fungus" (including the quotation marks), and got nearly 500,000 hits. The treatment recommended is baking soda. Of course, you have to deliver the soda to the physical cancer, which is hard to do for internal tumors. But it is based on the known fact that baking soda does more damage to fungi than to our bodily tissues. How much more? Nobody is saying.

There is an easy way to test the premise. If most of the bulk of a cancerous tumor is fungus, a systemic antifungal such as Lamisil (terbinafine) or Nizoral (kenocotazole) ought to eliminate it. Fact of the matter is, lots of people take antifungals for things like toenail fungus. Some of them die of cancer. I was almost one of them.

I was treated for a nail fungus several times between 1990 and 1999. In 2000 I was found to have a large tumor in the colon. It was called a "fulminating tumor" by the pathologist, meaning it was growing fast. After an operation and a half year of chemotherapy, I was OK, and have been a "cancer survivor" now nearly twelve years. The antifungal medicines did nothing to prevent my cancer from developing or growing. The surgery and chemo did.

Furthermore, I have a good friend who is a pathologist. A few weeks after the operation I borrowed the slides from the hospital pathologist and took them to my friend. He and I went to his lab, where he had a two-headed microscope, one used for teaching. We looked over them in quite a bit of detail. Now, you need to know that I have a good microscope at home also. Cost me a pretty penny (but his is much better). Microbiology is a hobby of mine. I've looked at lots of things, including mushrooms, molds and other fungi. The cancerous tissues in my pathology slides were definitely abnormal colon tissues, but they were just as definitely nothing like fungal tissues. My friend has seen slides of tissues invaded by fungi, and he was equally clear that there was no trace of fungus in these slides.

Why did I ask him about fungus? Because I saw photos of the tumor taken by the doctor who did my colonoscopy. It was very pale, almost totally white. I said, "It looks more like a mushroom," as compared to the normal colon tissue surrounding it, which was deep pink. Yet I also saw one photo taken right after the doctor took a sample through the colonoscope. The tumor was bleeding profusely. And what I saw through the slides showed that all the tissue was well filled with normal capillaries, except in some areas where the tumor had grown too fast and outrun its blood supply, and was dying. But dying cells still don't look like fungal cells. At any rate, my pathologist friend said I had been pretty sick, but I didn't have a fungus.

Pathologists know these things, folks. Why not ask your doctor? Every doctor knows at least one pathologist. Some will give you their phone numbers and you can call to ask, "Did you ever see any fungal cells in a surgically removed cancer?"

I really, really wish something as simple as baking soda, or a round of antifungal medicine, would cure cancer. I do not know of any case in which it has.