Fire alarm

Three weeks ago, October 24, 2007, I had blood drawn for a routine physical exam. My doctor (I'll call her Dr. L; don't need any enemies in the medical world here) had already seen me for the office visit part of the exam.

Everything came up clean, except for one thing. For the last year or so I've had frequent nighttime leg cramps, but they've been getting worse since around May, happening every F-ing night, waking me up as much as 10-12 times. Stretching, massage, various electrolytes and other supplements: nothing worked. Believe me when I tell you that being jerked bolt upright by a leg cramp 10 times every night will not make you healthy, wealthy, or wise. Except for that, though, I felt normal, strong — in pretty good shape for a guy pushing 50 and managing life with an almost-5-year-old boy at home.

The next day, Oct. 25, Dr. L called me in the morning and said she wanted me to come back in for another blood test, right away. All my blood cell lines were well below normal: red cells, white cells, platelets, hemoglobin. I also had an elevated level of CK, a muscle enzyme that can be a marker of heart disease, but also of generalized muscle inflammation. Dr. L thought overexercise probably explained my high CK reading, so she ordered me to stop all heavy exercise.

One piece of good news: a cholesterol reading of only 150. Since my cholesterol has been over 200 for the last few years, 150 was quite a surprise — such a surprise that I just stared at the test results for a long time. Obviously, I concluded, they must have mixed up my blood with somebody else's. The repeat test would come back normal.

No. Not a mistake. The second test came back just like the first one. Now the fire alarm began to clang. Dr. L said the test meant my bone marrow wasn't producing enough new cells. She wouldn't speculate on why, but she kept saying she was "concerned." When a doctor says she's "concerned," you know something's wrong. You also know that it's probably worse than you think. Dr. L started calling me a lot, at night, even over the weekend, on her cellphone, to check that I didn't have a fever or feel weak or have any other symptoms. If I got a fever, she said, go to the ER right away. Stay away from crowds and public places. Start washing your hands all the time. She said she wanted me seen at the hematology clinic ASAP.

At first, this seemed impossible. Hematology said they were backlogged and it would be 4-6 weeks before I could be seen. Couldn't it wait, since I wasn't having symptoms? Dr. L kept calling and pushing, though, for which I will be forever grateful. Just doing her job, advocating for her patient with system, but not something a lot of doctors would have done. Sunday night, Oct. 28, she called on her cellphone to say I had an appointment the following morning.

OK, fine, still probably some sort of temporary thing. I'd get over it, like I always have. I felt normal.

Maybe I'll say a bit about me and the body I live in now. I'm 49, 5'10", 165 lbs., male, of mainly Welsh and English ancestry. I still have most of my hair. People always say I look young, even 10-15 years younger than I am. Except for a couple of years trying hard to feel cool while shaving with an unfiltered Camel drooping from the corner my mouth, smoke burning my eyes, I've always been physically active. I started long-distance running at 14. Aikido (I have a black belt), Iyengar yoga (over 25 years now), weightlifting, cycling, swimming, hiking... I do a lot, and I'm generally a healthy guy. I drink maybe a bit too much nice wine and dark roast coffee, but I eat well and I take my vitamins. I've always thought I'd live to 100. My basic philosophy is that exercise can cure anything.

Knowing that my blood counts were down so much, though, some suspicions began to creep in. I contracted a bad case of pneumonia last February, during a sabbatical in the Netherlands, and it took 6-8 weeks to recover. But I never got quite back to where I'd been before the pneumonia. Ever since, my pulse seemed to rise too fast, and stay too high, during exercise. For the first time ever, I had to take rest breaks while climbing even 2-3 flights of stairs. My muscles felt harder to stretch, and they stayed sorer longer after weightlifting or intense yoga sessions. And then there were the leg cramps, getting worse and not relieved by any of the usual treatments. I'd thought of all this as aging + stress. Now I was thinking low hemoglobin = poor oxygen transport.

Back to the story. Dr. L made me confess to every pill I was taking. These included multivitamins, vitamin C, co-enzyme Q-10, alpha lipoic acid, and a few other nutrients; calcium and magnesium for the leg cramps (useless, except as placebos). They also included L-tryptophan and 5-HTP for chronic insomnia.

Now, 15 years ago a contaminated batch of L-tryptophan from a Japanese manufacturer caused a rare blood disorder called eosinophilia myalgia syndrome (ESM) in an indeterminate number of people (between 3000 and 60,000, depending on whom you ask). In ESM, your body makes too many eosinophils (one kind of white blood cell), which then attack your nerves and muscles, causing pain and inflammation. Most people got over their ESM when they stopped taking the bad tryptophan, but not everyone did: some still suffer from it, and apparently — I now know — it's not entirely certain that the contaminant, rather than the tryptophan itself, caused the disease. The FDA took tryptophan off the market for more than a decade, but it's available again now with a better-monitored manufacturing process. Fortunately, my eosinophil count was on the low end of the normal range, and I don't have myalgia. So this wasn't it, but I worried about it anyway. I stopped taking everything, including alcohol and caffeine, right away. (Well, actually I backed down gradually on the coffee, but now I've been completely off it for a week.)

On Halloween morning, Oct. 29 — my son's 5th birthday — I went in for my hematology appointment at the University of Michigan hospital. Fortunately we'd held Luka's party the day before.

Hematology is in the UM Hospital's Cancer Center. Not a place I'd recommend visiting, if you can help it. The waiting room is filled with people who look pale and worn, some wearing surgical masks to guard against infection, others wearing wool caps to cover hairless heads. A faint smell of alcohol (the ubiquitous Purell) permeates the air. Worst is seeing the kids, some in wheelchairs, some with long scars across shaved skulls. The staff were dressed up in Halloween costumes and getting ready for a party with the kids. To me everything took on a wavy look, like precarious broadcast TV coming in from a faraway station.

Amazing: the genuine humanity of the staff in this clinic. Nobody pretends everything's fine here — what would be the point? — but they're cheerful and open anyway. They look you in the eye. They seem to know how dark it is inside you and they're determined to shine their living light in there, even for a few seconds.

On my two hours in the clinic and my bone marrow biopsy, I'll spare you the blow-by-blow —which exactly describes what it felt like — except for this bit. The hematologist, Dr. A, said it might just be that some virus, hepatitis B or C, or some unknown virus, had knocked out my immune system temporarily and it was taking some time to come back up. Nice theory; I would have been glad to leave at that moment. But, he said, acute leukemia is definitely a possibility. More or less exactly like that, he said it. I am preparing you for the possibility of bad news. And as he left us: you will not hear from me again, whatever the results, until our next appointment. I don't believe in telling people they have leukemia on the phone. So he left a door open for hope.

We hung in that doorway all week, but in my dark hours — and there were many of them — I knew what Dr. A's parting comment really meant. He was going to tell me I had leukemia.