The Tree of Worry

Recipe for disaster: sitting at home with a web browser while being treated for a serious illness. Every little thing is a branch on the Tree of Worry, with who knows how many Worry Leaves on it.

Today’s case in point is my cold. Along with the nose-blowing and sore throat, I have a slight cough and a mild ache in my chest. Sounds like a pretty standard cold, right? Oh, no, not at all. In my case, because I’m taking Bleomycin, I also have to worry about lung toxicity, specifically pneumonitis and pulmonary fibrosis. Pneumonitis is lung inflammation, and it’s usually temporary, but pulmonary fibrosis is a permanent and potentially fatal condition that kills a small percentage of people undergoing the chemotherapy I’m doing. It’s all icky, and there’s no reason to dwell on the details here.

All known risk factors are in my favor: I’m under 40, I’ve never smoked or experienced lung problems, my cumulative dosage of Bleomycin is somewhat low (270 units), my cancer wasn’t very advanced, my kidneys are functioning well, I haven’t had radiation therapy, my hospital is correctly administering the drug to me, and I’m willing to abide by a lifelong restriction on high-dose oxygen exposure (including, sadly, scuba diving). Still, even though I’m in a low-risk group, I have a 2.5% chance of experiencing some kind of Bleomycin pulmonary toxicity. And when I meet tomorrow with my oncologist for our once-per-cycle routine appointment, I’ll present myself with some of the symptoms of it.

Or maybe it’s just a cold.

Survived the night

Hooray! It looks like the cold won’t last too long or be too severe. Last night my temperature reached 99.4 degrees, which is 1.1 degrees below the temperature at which I’m supposed to drive to the hospital to be admitted (100.5). This morning I was down to 98.4, which is still high for me but within normal range. Sore throat, runny nose, headache. Stomach OK.

20 more days until my last infusion.

Cause and effect

I’m not saying there’s any causation here, but Friday I stopped all Vitamin C, and today I have a cold.

Like my discomfort, like my chemotherapy, like my cancer, this will all go away soon, and I’ll have my life and my health back.

Lexicon of Lameness

Following is a list of words and acronyms that are now emotionally charged in my mind.

• I/O: This used to stand for “input and output,” which was the various ways a computer communicates with the world (network, keyboard, video, etc.). Now it’s the abbreviation that testicular cancer survivors use to refer to an inguinal orchiectomy. They even use the slash! So a neat computer term now refers to getting one’s ball cut off.
• AFP: Formerly the Apple Filing Protocol, the equivalent of Windows SMB/CIFS. Also Agence France-Presse, the French version of the Associated Press. Now refers to Alpha-fetoprotein, anticipation of whose test results scare the crap out of me on a weekly or monthly basis.
• Einhorn: Used to evoke Lois Einhorn from Ace Ventura: Pet Detective. Now it refers to one of the heroes in the TC community, Lawrence Einhorn, who developed BEP chemotherapy.
• HDC: The hDC is, in Hungarian notation, a handle to the device context in the Win32 API. If you ever draw something in a Windows program, there’s an hDC or its equivalent somewhere in your code. Now it’s the abbreviation for “high-dose chemotherapy,” which is what I might eventually face if my current chemo fails (which it won’t).
• PET: Used to be the Commodore PET, which I passed over to get my 48K Apple ][ in 1980. Now it’s a PET scan.
• VIP: The kind of treatment that expensive credit cards promise. Now an alternative to the BEP chemotherapy I’m undergoing.
• Recurrence, recur, relapse, relapsed: Neutral words that now make my heart skip a beat when I hear them.
• Semolina pasta: Looks way too much like seminoma, a kind of testicular cancer (the easier kind, which is not the kind I have).

Lawrence Einhorn

Followup on Vitamin C

My oncologist wrote back and said not to worry about the Vitamin C thing. Incredibly, she didn’t even say to stop taking it. She did send a link to one page saying, among other things, that “most oncologists routinely recommend that people with cancer avoid gram-size doses of vitamin C during treatment,” and I’ve been unwittingly flouting that advice.

She also referred (“just for the sake of argument”) to another article criticizing the study that freaked me out. Its most interesting point was that the study was done on mice, and mice are different from humans in that their bodies manufacture their own Vitamin C. If mice are effectively taking the human equivalent of 10,000 mg of Vitamin C daily, how could it make a difference if they take another 2,000 mg? Unfortunately, the article then goes on to say how rilly rilly rilly wonderful Vitamin C is, and that the study’s researchers had a conflict of interest because Bristol-Myers-Squibb is on their board of directors, all of which sets off my “Oh yeah, I’m reading stuff I found on the Internet” credibility alarm.

The problem with the “how could it make a difference?” question is that it’s fallacious. The reasoning goes like this:

• A study showed X.
• We don’t understand how X could be true.
• Thus, the study must be wrong.

In other words, just because it’s surprising that mice would be affected by supplemental Vitamin C doesn’t mean that they aren’t affected by supplemental Vitamin C.

But this doesn’t mean I’ve reasoned myself into being sick with worry again. I like the point that mouse study conclusions don’t automatically translate into conclusions about humans, particularly for studies involving a nutrient that is fundamentally different in terms of how it gets into human vs. mouse bodies. So I won’t treat the study as a death sentence.

But I have definitely taken the hint. I’ve stopped taking Vitamin C for at least the remainder of my chemotherapy. If I feel like eating an orange, I will, and I’ll try not to feel bad about it.

Nausea numbers

Last Saturday was the first day this cycle that I felt more or less physically normal. That makes seven days of nausea following chemo in Cycle 2. During Cycle 1, I felt normal on Wednesday, which was only four days of nausea. It’s hard to infer a progression from those two data points, but the formula might be something like (4 x cycle number) as the upper bound on number of nausea days. That means I should be feeling better on or before Wednesday, October 21, twelve days after Cycle 3’s main chemo ends. This is a considerably better deal than the six straight weeks that morning sickness usually lasts, and as with pregnancy, the upside is life. No complaints here.

Other side effects, as long as I’m writing:

• Peripheral neuropathy: at the moment, it is uncomfortable but not painful to type on a computer keyboard. Pressing on small, hard surfaces that are bigger than a Braille dot, such as a Lego stud, still causes near-screaming pain. When I make a fist, my hands feel swollen. But unlike last week, I can close my hands enough to make a fist at all, so I’m seeing some improvement.
• Fatigue: it’s there, but not debilitating anymore. I take one nap and drink one cup of green tea mid-day, and that’s enough to keep me up and about until bedtime.
• General jumpiness and skin-crawliness: gone. I haven’t written much about this, but it’s the worst part of the post-chemo recovery. I’m trying to drink at least a pint of water every hour even though the taste of water disgusts me, I can’t sit in one place for more than about a minute, the wall clock seems to run at half-speed, and at night I can’t sleep for longer than 90 minutes at a time. Fortunately, this discomfort is almost exclusively physical; it doesn’t affect me emotionally. (Don’t get me wrong. I feel pretty grouchy while it’s happening. But it doesn’t get me depressed or despondent.)
• Appetite: mostly back, though my sense of taste hasn’t fully recovered, and there are some things I’d normally love to eat but would pass on right now (tomato sauces are an example). Although you’d expect that appetite would be related to nausea, it’s weird that the nausea doesn’t seem to cause the loss of appetite. What I mean is that I don’t say to myself, “Ooh, ravioli sounds good. Wait a minute *URP*.” It’s just that I happen not to want to eat on the same days that I’m feeling nauseated. And believe me, I know nausea-induced loss of appetite; it’s what I experience when everyone else on the boat is watching whales.
• Rash: I have a hard red dry bump, about half the size of a dime, on my right index finger. I think this is from Bleomycin.
• Other random stuff: either the chemo has suddenly brought out age spots on my hands, or I’ve just gotten good at being critical of my body lately. Age spots that were faint have gotten quite a bit darker. I’m also turning 40 soon, so this might just be a coincidence.

Hair Update

Today’s the 35th day of my treatment (23 days left if we stay with 3xBEP). I haven’t written about hair loss for a while. Here’s how the hair fares:

• Head hair: almost the very last of it fell out in the shower today. If I run warm water on my head for a few minutes, it must relax the follicles, because I can then rub my head and cause the remaining stubs of hair to come loose. I did that today, and got almost all of them to come out. This is right on schedule after 5 weeks: various websites promised it’d be all gone after 4-6 weeks.
• Eyelashes and eyebrows: still hanging on. One eyebrow hair fell onto my computer this morning. That happens normally from time to time, so it’s hard to tell whether it’s nothing or the beginning of something.
• Beard: this has been gone for a while. I think this fell out at the same rate as my head hair, but I’m more accustomed to fiddling with my beard, so I rubbed it off sooner. I have noticed about 20 rogue blond hairs growing in the beard area that seem to be new growth. I’m quite sure they’re yellowish and not gray or white.
• Leg hair: still there, but it’s fallen out where my pants rub my thighs.
• Arm hair: still all there.
• Pubic hair: about 50% gone.
• Underarm hair: all there.
• Chest hair: about 50% gone.
• Back hair: I don’t have back hair! That’s disgusting.
• That thin layer of blond hair that covers many parts of the body, such as the ears: still all there.

I don’t regret my decision to shave my head a few weeks ago. I am convinced that with great care, I could have kept an apparently full head of hair until now and probably beyond, but it would have meant never letting anything — including water or shampoo — touch my head, lest doing so dislodge the dead follicles. I couldn’t think of any reason to go through that effort.

More self-flagellation about Vitamin C

I’ve sent off emails to my oncologist and to Dr. Nichols asking whether my treatment should be changed in response to all the Vitamin C I’ve been taking. These things have a tendency in life to happen on Friday afternoon, meaning one gets the whole weekend to ponder one’s fate.

Each of the supplements I was taking fell into one of the following categories:

1. Specifically recommended or prescribed by my treating physician (L-glutamine, Vitamin B6, Vitamin D, magnesium, Neupogen, fosfomycin, and of course the chemotherapy drugs themselves).
2. Disclosed to my physician and approved (daily multivitamin, fish oil).
3. Food that I take for drug reasons, which many people wouldn’t call drugs (coffee, olive oil, turmeric).
4. A couple home remedies I took for tinnitus on certain days (licorice root, ginkgo biloba).
5. A home remedy I took to help fight off colds (Vitamin C).

My point is that I was trying hard to educate myself about the therapy I was going through. I listened to my doctors and took good notes. I did research of my own (e.g., fosfomycin), discussed it with my doctors, and followed their advice. I’ve done everything they said. But after all this, my chemotherapy might fail and I might die because I drank too much Tang?

Please understand that I’m not arguing. This isn’t a human conflict that can be argued. It’s physiology, and physiology doesn’t care what my intentions were, or whether I thought the word “vitamin” sounded friendlier than “drug.” Either the Vitamin C will make a difference, or it won’t, and my feelings, explanations, and excuses don’t determine that outcome.

But I am upset that my future now seems to be either regret or worry (or both).

Regret: my cancer comes back in a few months. If this happens, I’ll naturally assume that I caused this outcome by taking Vitamin C, and I will regret being responsible. (If it weren’t for the Vitamin C thing, this outcome would have been called “sorrow” rather than “regret.” I’d be sad it happened, but I’d have a hard time feeling responsible for it.)

Worry: that my cancer will come back at my next exam. This was always going to be a worry; it’s part of a cancer survivor’s life. But the Vitamin C makes it into a different, worse kind of worry, because the outcome leads to regret (see above) rather than sorrow (see above). I bet the German language has a word for this: a kind of worry that one’s own actions will cause bad consequences (“will I get caught?”), rather than a simple worry that bad things will happen (“will the sky fall?”). The difference is that simple worries are a fact of life, just part of the background noise of living in a mortal world. But worries about someday getting a comeuppance for one’s own actions? Those are unique, personalized risks that are harder to ignore. In fact, since I am a Catholic school survivor, my first instinct is that I’d be a bad person for even trying to ignore them.

Maybe Dr. Nichols will recommend an extra BEP round. From my naive perspective, that makes everyone happy. Yes, the ignorance about Vitamin C had a consequence: San Fran Dad went through extra inconvenience and increased long-term risk of certain side effects; the hospital has to handle a patient for an extra three weeks and maybe adds “avoid antioxidants!” to its future chemo patient literature. And that’s a story I can sell myself: “I foolishly took a supplement that conflicted with my chemo, so we did more chemo to make up for it.”

Meanwhile, anyone know any home remedies to chelate Vitamin C?

That last question was a joke.

Vitamin C

Aargh! I was doing some web browsing last night and came across a study showing that Vitamin C interferes with cancer treatment. The reasons are that (1) most chemotherapy drugs (including the ones I’m taking) depend on free radicals to work, and Vitamin C is an antioxidant that gets rid of free radicals, and (2) Vitamin C encourages repair rather than death in cases of slightly damaged cells, which is absolutely not what you want when you’re trying to damage and kill certain cells in the body. I’ve been taking 700mg daily throughout treatment, and at least every other day or so drink a powdered fizzy solution that contains another gram. This is in addition to the canned pineapple and oranges I’ve been craving lately. So I’ve been averaging over 1200mg daily of a substance that thwarts my chemotherapy.

At least I learned this before my third cycle, so I can stop intake today, leaving 9 days to deplete whatever Vitamin C is still stored in my body. In fact, I think I’ll ditch my pill regime for the remainder of my treatment. Two cycles as Well-Supplemented San Fran Dad, and one cycle as San Fran Dad Who Eats Only Toast.

This is a tough reminder of why cancer is such a difficult disease. These cancer cells are me. I made them, they have my DNA, and my body recognizes them, welcomes them, and protects them. They’re not a foreign invader. Just about anything I do that is good also helps them. But at the same time, we’re not living in Opposite World; failing to take care of my body hurts me more than it hurts them (remember, they’re part of my body, which is always trying to keep itself healthy). Chemotherapy drugs are blunt tools that happen to hurt cancer cells slightly more than most of the other cells in the body. Unless you take Vitamin C, that is. Sigh.

Why not do it all at once?

Today San Fran Mom asked me whether I’d start my third cycle today if I could. I answered yes without missing a beat; I would get the discomfort over with as soon as possible, even if it meant a higher level of discomfort than otherwise. Our discussion led to why chemotherapy is done in multiple cycles rather than all at once. The answer is simply that the body can’t safely handle such a high dose of medicine at once. For example, the kidneys need to filter out most of the chemicals, and they can handle only a certain maximum volume of liquid. Moreover, the immune system gets pretty shellshocked during chemotherapy, and it’s much safer for the body to spend a longer time with moderately compromised defenses than a shorter time with almost none at all.

As far as I know, if it weren’t for these side effects, chemotherapy could be given as a single injection that would instantly kill the cancer cells. But the side effects exist, and that’s why in my case I’ll have to be patient for another 29 days.