Symptoms

Everybody with anemia (a generic term for low red blood counts) gets headaches and fatigue. Me too. But here's a little catalog of some more exotic symptoms, more or less in the order they occurred starting in March 2010.

Some of these may not be directly related to HCL. Yet everything on this list was also present as I slowly crashed in the spring and summer of 2007, before my first treatment — and disappeared for 2 years or more after cladribine.

• Increase in heart rate during exercise. See last post. Almost certainly an effect of low hemoglobin.
• Nighttime leg cramps. I started getting these years ago, maybe around 2003, long before HCL. Lots of perfectly healthy people start getting these as they age, and nobody knows exactly why. They tested me for peripheral artery disease and it came up negative. The cramps came and went for years, but in 2007 they got worse and worse, waking me up every 2 hours or so all night, every night. They're totally brutal — come on in a flash, jerk you right out of bed. If you can stop screaming and stand up, they vanish within 10-15 seconds, as your legs fill up with blood. Probably it's low hemoglobin and/or low red count. The legs, furthest from the heart, aren't getting enough oxygen; eventually they cramp to try to force some blood through the veins. My cramps stopped completely about 3 months after cladribine.
  
• Night sweats. Also common for leukemia patients. In summer 2007, I woke up drenched in sweat almost every night. They started again 2-3 months ago. Haven't been nearly as bad this time — damp, never soaking — and they've actually more or less stopped in the last 2 weeks.
• Hearing my pulse. On Bastille Day 2007, we went to see the fireworks in Uzès, a small city in the south of France. We had a great view but we were way too close to the launchers; it felt like an artillery barrage. My ears rang for weeks. I know all about tinnitus (ringing in the ears) from years of electric guitar and rock concerts. This time, though, it wasn't just ringing. I started hearing my pulse in my left ear. Squish, squoosh, squish. Apparently it's not uncommon for tinnitus sufferers to have this, so I chalked it up to the fireworks. But unbeknownst to me, the HCL was already far along. 2 months after cladribine, I realized that the sound had disappeared altogether. This August it came back again. And it's getting louder. Going to sleep, squish squoosh, feels like lying at the bottom of a swimming pool next to a slowly churning pump. Why? My guess: as my blood gets thinner, the blood vessels get less taut — something like the difference between a (soundless) hose blasting water at full strength and the gurgling you hear when the water's running too slowly to completely fill the hose.
• Lightheadedness. That's not even really the right word. Not dizzy, don't feel like I'm going to fall over. I can still think and talk just fine. Just a feeling of not being all there.

None of this persisted after treatment in 2007.

Not all symptoms are bad. Two more:

• Joy in small things. I like this one a lot. No mortal fear this time; I know I'll recover. Yet I'm sharply aware of mortality, and right now I'm taking a quiet pleasure in everything. My partner, my beautiful child. Work, colleagues, friends, family. Cold air, changing leaves. Bicycles, walking, fixing things. Even email.
• Weight loss. I hit 185 lbs in 2004, when Luka was a year old. We were living in South Africa, where you're always at a braai eating sausages. I felt like pork city and really had to work to drop that weight. For the last 6 years I've been cycling between two set points, 173-175 lbs and 163-165 lbs. I'll go a year or two at 174, which feels chunky. Then over a summer I'll focus on eating better, count calories for a few weeks, and drop back to 164, which feels about right for a 5'10" active guy. I'll hang there for a year or two; then it creeps back up again, usually during a winter when I'm always cold and working too hard.
  

This summer I'd been struggling through the weight-loss phase. Got down to 166 but couldn't break through it. In the last 2 months, though, it suddenly got a lot easier. Part summer and healthier food, part carpentry; I built my son a playhouse. I love that kind of project, working outside, moving all day long, using my hands and my strength. In fact, I love it so much I forget to eat. The combination of high output and low input often takes off a few pounds in a week or two. In my next life, I'm coming back as a contractor.

But now I've rather suddenly dropped below my 164 set point, down to 160-161. This has been almost impossible in the past, but this time it just happened, no effort on my part. I suspect there's a disease process at work here. So I'm focusing on eating a bit more. Fortunately, a cup or two of dark chocolate mousse at night puts me right back to 165 in a few days. You don't want to be underweight if you're at risk for pneumonia, which I will be in a month or so, after treatment. So I'll keep monitoring. And wolfing down chocolate mousse. Should that prove necessary.

I've certainly had worse problems.