Balance

• Hemoglobin 13.5 (WHO normal 14.0-17.3) — normal by UM standards
  
• Absolute neutrophil count 2.4 (normal 1.4-7.5) — NORMAL
  
• White blood cell count 3.1 (normal 4-10) — subnormal but expected
• Platelet count 201 (normal 150-450) — NORMAL

These counts are from April 9 (see new charts). The fact that I'm just getting around to posting them, three weeks later, gives you an idea of how much less urgent this all seems now. White blood count's low because of low lymphocytes (0.4, normal ≥ 1.2), which we expect to see for another 18 months or so. (This carries no clinical implications, so nobody's worried. Not even me.) Everything else looks great.

They actually had to make me go in for the blood test. I thought Dr. B had put me on a 3-month schedule, but the nurses thought otherwise, so I grumbled but I went. I won't have another until mid-May, at my next followup with Dr. B.

It's been 6 weeks since my last headache. Once in a while I get a twinge that reminds me the underlying condition's still hanging around, but otherwise I am absolutely, completely normal now. I can do anything. Bring it on.

Median time to relapse is 8 years. Retreatment usually works. Some people never need more treatment. And I have a normal life expectancy. That shakes out as victory — which is never permanent anyway, so why the hell not.

In fact I feel better than I have in 2 years. The other day I suddenly realized I'm taking stairs 2 at a time again, something I did all my life until I gradually started slowing down as my hemoglobin dropped. I made up all kinds of excuses — aging, tired that day, didn't want to sweat in my work clothes. But I sometimes wondered why I couldn't just bound on up the stairs, like I always had.

Anyway. Balance. I had in mind "balance sheet," adding up a bit of what I learned from all this. Today that seems like a bigger job than I want to tackle, so I'll just throw out this:

Time is short, and precious. Don't waste it wishing you were somebody else.

If you've got a good life, you don't need another one. Just do what you do, use what you have, give everything you can to everyone who needs you. Chop wood. Carry water.

Objection

Passed on to me by a friend:

Conscientious Objector
by Edna St. Vincent Millay

I shall die, but
that is all that I shall do for Death.
I hear him leading his horse out of the stall;
I hear the clatter on the barn-floor.
He is in haste; he has business in Cuba,
business in the Balkans,
many calls to make this morning.
But I will not hold the bridle
while he cinches the girth.
And he may mount by himself:
I will not give him a leg up.

Though he flick my shoulders with his whip,
I will not tell him which way the fox ran.
With his hoof on my breast, I will not tell him where
the black boy hides in the swamp.
I shall die, but that is all that I shall do for Death;
I am not on his pay-roll.

I will not tell him the whereabouts of my friends
nor of my enemies either.
Though he promise me much,
I will not map him the route to any man's door.
Am I a spy in the land of the living,
that I should deliver men to Death?
Brother, the password and the plans of our city
are safe with me; never through me
Shall you be overcome.

Endgame?

Too soon to declare victory.

But since I started acupuncture treatments, 12 days ago, I've had no headaches to speak of. (Well, I did have one, but it felt more like a hangover from taking a muscle relaxant at 3:30 AM.) Tension in my face and jaw slowly diminished. That's still hanging around, but at a low level, doesn't distract me much now and seems a bit lighter every day. Teeth mostly stopped hurting, too.

I had three followup appointments, 3-4 days apart. Yesterday the acupuncturist declared my case closed, except for a tuneup in 2 weeks.

Also, no drugs at all now, except nortriptyline for chronic insomnia. (If you read the link, don't freak out — my dose is only 15 mg, not enough to trigger the increase in suicidal tendencies that can accompany this drug when it's used as an antidepressant at 50-100 mg. And I had the insomnia long before HCL.)

One of my colleagues wrote:

I know about headaches, had them for 1.5 years every day. It was hard; I even talked to my own headache, as if it was a person controlling me. At some point, however, it disappeared, slowly. And when it was gone, I even missed it, strangely enough. I asked where are you? Of course, it was a blessing to live without it again. I hope you will find the same grace. I wish you love, strength and courage.

I know what he means. Mine lasted from the beginning of December until the middle of March. Three and a half months. You have no idea how good it feels to be able to just say Fine, thanks when somebody asks me how I'm doing. Pain makes very boring conversation.

Yesterday I spent 7.5 straight hours in social situations — meetings, a talk, a dinner. Wasn't sure I'd make it, but I did. Three weeks ago I couldn't go out at all, could hardly talk to my family, had to keep going off to lie down and try to relax my face. The slightest facial expression felt like the Nazi dentist from Marathon Man testing his drills on my head. When that's happening you think it will never stop. Thought I'd ruined my teeth. Started imagining living with dentures at age 50. Began contemplating a permanent headache, daily pain, a lifetime of pureed food — somehow accommodating to that. Somebody else I know has had more or less constant pain for a decade or so, from neck and back problems. I can't imagine how she survives it — much less taking the time to read this blog and write me sympathetic emails. Where does that come from?

The last few days have been almost like normal. Almost like before leukemia. Not quite. That one's not so easy to forget. And I'm still a bit nervous about the headaches coming back. If I go a month without them, I might get ready to drop my guard.

Acupuncture

The week that followed my previous post consisted mainly of me lying in bed moaning like a dying warthog. Headaches from the third circle of hell. My temples screamed. The slightest facial expression made my jaw muscles clamp down so tightly I could hardly open my mouth. My teeth ached constantly, moving every couple of hours from one tooth or area to another just to keep me on my toes. My diet consisted entirely of soup and fruit smoothies, though even the soup made my teeth hurt. Vicodin and muscle relaxants would knock me out for a while, but it wouldn't be long before I was back in the inferno.

Then, last Thursday, I went to see an acupuncturist.

I'd tried this a few weeks earlier with a different practitioner, but the effects were minor at best. Then the guy tried to sell me on a weird enzyme-nutrition theory, so I didn't go back. This time I went to someone I'd seen seven years ago, for hip muscle spasms.

Having lived in Santa Cruz, CA for 9 years, I'm not a newbie. You can get treated by students at a local acupuncture school there for not very much money. I probably did 15 or 20 sessions altogether. The complaints I went in with were ones that probably nobody could do much about: chronic knee pain, most likely from a torn meniscus, and tinnitus (ringing in the ears) thanks to my previous life as a rock musician. The treatments didn't fix my problems, but I enjoyed them. Often I'd fall asleep on the table.

Two conflicting thoughts always run through my head when I do this. One is placebo, placebo, placebo. He's creating an atmosphere, reassuring me, pulling on the power of my desperation and my hope. And now I'm lying here relaxing for half an hour looking like a pincushion. Of course I'm going to feel better, but nothing's really happening. The other thought is this technique works directly on the nervous system. Western approaches treat nerves with drugs that affect the entire system all at once, but acupuncture acts on individual nerves related to specific sensations. Of course its effects are real.

This time, the effect was so dramatic that I simply can't believe it was placebo. I went into the office with a splitting headache, pain in my teeth, hurting so much I wanted to curl up and die. No bullshit, no explanation, no pep talk; Brodie just said let's see if we can get you feeling better and went to work. The first needle went into the top of my left foot, but I felt it mainly in my jaw. Most of the needles went into my hands and feet; a few into the sides of my head and my ear. This was a different pattern from what the other acupuncturist had tried (and I didn't feel much from his needles). I lay on the blissfully warm heated table for an hour, and all the tension and the pain simply melted away.

I left the office with no headache at all. Over the course of the day, the pain in my teeth gradually diminished. When I woke up the next morning that pain was gone, for the first time in 3.5 months — and it has not returned. Tension in my jaw muscles did continue, coming in waves lasting an hour or so. But though this got quite uncomfortable and distracting, it was not actually painful.

Felt the beginnings of a renewed headache on Monday, plus more jaw tension. Had another treatment and again, the next day was a very good day, no pain and much reduced jaw tension. I'll do this again a couple of times and see where it leads.

Now, I'm not a controlled experiment. Who knows if this would work the same way for you. I'm blasting away with every weapon I can think of, all at the same time, including muscle relaxants, ibuprofen (for inflammation), nortryptilene, self-hypnosis, etc., and so would you if you were me. But following the acupuncture I've tapered off the ibuprofen to just 4 pills a day, and mostly off the muscle relaxants too. No Vicodin, either.

Nothing else I've tried has been nearly so dramatic. It was, in a word, like magic.

While little is known about the mechanisms by which acupuncture may act, a review of neuroimaging research suggests that specific acupuncture points have distinct effects on cerebral activity in specific areas that are not otherwise predictable anatomically. — Lewith et al., in Evidence-based complementary and alternative medicine: eCAM 2:3 (2005), 315-9.

Head case

So I've made my decision. Or maybe I should say that now a decision seems possible, for the first time. I'm going to stop worrying about HCL. Whatever happens will happen. I can't control it, and grinding away won't help. So stop.

I studied the beautiful martial art of aikido for 13 years, got a black belt, taught it at Apple Computer for several years — would still be doing it if my knees hadn't had enough. I've practiced yoga for 24 years, almost half my life. These are intensive physical disciplines requiring enormous, extremely precise control of the body. Every muscle, every tiny movement, the expression on your face, the motion of your breath are all part of the whole. You have to master all of it. The miracle is that you can.

Yet the further you go, the more you realize that controlling the body is merely a baby step toward something much, much harder: controlling what happens in your mind. In aikido, it's controlling fear and reflex; staying relaxed, easy, joyful with an attacker bearing down on you, eyes wide open and aware while you're spinning, rolling, flying upside down. Blending with the energy of an attack, channeling it into smooth, clear motion.

In yoga it's ending thought, in savasana (corpse pose). You just lie there on your back, resting, with your arms and legs splayed out and your eyes closed. Sounds easy. But the point of the pose is to clear the mind of thoughts, simply inhabiting the body, feeling the breath rise and fall. No past, no future. Only the present moment, here, now.

Eventually you learn: savasana's the hardest pose of all. Harder than 10-minute headstands, back bends, splits, extreme contortions of all sorts. In those poses you can't help but be in the present. You're concentrating so hard, against so much powerful physical sensation, that you almost don't have a choice. (Though even here your mind can wander.)

Worrying's the same. You know it doesn't do any good, but you keep right on going anyway. You're addicted. You decide to stop, but your vigilance gives out after 2 minutes and once again you're fretting away, mainlining anxiety, doing your drug. Your six-blade knife, do anything for you. You worry in your sleep, while you're working out, at the movies — even, secretly, while saying goodnight to your child, whispering to your partner, laughing with your friends. And you just can't stop. Not under your control. Maybe you blame it on somebody else, usually the person who loves you most. Maybe you blame yourself. Either way, now you're worried about worrying.

In my case, I can stop the conscious thoughts to some degree. But these infernal f-ing headaches just keep hanging around, stormclouds on the inner horizon, an embodied form of worry. The muscles in my face seem to be in permanent spasm. Hard little knots of fear, bundles of pain. Here's a partial list of what I've tried:

• Self-hypnosis recordings on relieving TMJ and headaches
  
• Binaural beat recordings
• Hot tubs
• Saunas
• Professional massage
• Self-massage (ma roller, fingertips)
• Yoga
• Inversion sling
  
• Moist heat pack
• Cold pack
• Ibuprofen
• Vicodin
• Ativan
• Alcohol/no alcohol
• Caffeine/no caffeine
  
• Inane TV shows
• Trashy mystery novels
  
• Intermediate bite splint (thin, hard)
• Soft bite splint
• Books on trigger points and TMJ
  

All this, but the headaches and the teeth-clenching still go on. Anything that induces facial expressions — basically any social interaction, even phone calls — ends with the sides of my head on fire, flaming golf balls wedged in my cheeks.

I know some people live with headaches forever. But now that the HCL is (temporarily) behind me, I'm determined to wipe them out. Maybe this will just happen, slowly, as an unconscious process. Right now I'm trying a week of heavy-duty ibuprofen, vicodin, muscle relaxants, bed rest, on the theory that if I can knock out the pain long enough maybe the muscle spasms will ease. Various appointments with specialists are pending, but I don't have high hopes. Ultimately this has to come from within.

It's going to take mind control. And that is just, basically, incredibly hard.

Yo-yo

• Hemoglobin 13.3 (WHO normal 14.0-17.3) — normal by UM standards
  
• Absolute neutrophil count 4.1 (normal 1.4-7.5) — NORMAL
  
• White blood cell count 5.1 (normal 4-10) — NORMAL
• Platelet count 218 (normal 150-450) — NORMAL

Wow. I've never been through a bounce like this one. I feel like a human yo-yo.

Saw Dr. B today. His news is nowhere near as bad as they'd told me a week ago. In fact, the news is great — not perfect, but great.

So. The morphology — visual examination of my bone marrow biopsy, under a microscope — had revealed a small nodule, entirely normal in a 50-year-old guy. They stained the sample to find out what was in it. One of the stains showed CD-20, the cell surface protein that's typical of hairy cells. They determined that 5-10 percent of the bone marrow space consisted of CD-20 positive cells. That's what Dr. B's PA reported to me as "5-10 percent hairy cells."

For whatever reason (who the hell cares, now), she misinterpreted this result. CD-20's expressed on all B-cells, including the normal ones. So the 5-10 percent figure says exactly nothing about the percentage of hairy cells in my bone marrow.

What about the flow cytometry, the laser-based protein marker detector, far more accurate than morphology? On the flow, things looked, in fact, PRETTY DAMN GOOD. Less than 2 percent hairy cells! Yow! Dr. B said this is somewhere between a complete remission and a partial remission, in other words, a very very good partial remission — not at all what I'd been living with all week. Boing-a boing-a boing-a; this time the bounce is up. Sometimes you're the bug, but sometimes, sometimes, you get to be the windshield. Splat.

On top of that, my blood counts look great. Low lymphocytes (0.4), but we knew that. Almost normal red cells (4.43; normal is 4.5). Hemoglobin at 13.3, which UM counts as normal. Probably both of those will still rise for another week or two. Everything else well inside the normal range. I haven't seen a test like that in years.

What to do next? Dr. B's answer: nothing. No more treatments. Watch and wait. He calculates that the risks of rituxan aren't worth the additional benefit, especially because nobody's really sure, yet, whether there actually is any additional benefit from 2-CdA + rituxan. Most people in my category typically go years, even many years, before a remission (though some don't, and I'm mindful that I could always turn out to be in that camp).

We ended up leaving it that I'll go back for one more bone marrow biopsy in 3 months, see where I stand then. (Don't have to, but I want to, for psychological more than for medical reasons.) It's even possible that by then the 2 percent will drop further, though it could also go higher. But unless it really shoots up, I'm set for a while, and convinced that waiting is the right thing to do.

More later, after I celebrate. Yo-yo.

There is a girl in New York City
Who calls herself the human trampoline
And sometimes when I'm falling flying
Or tumbling in turmoil I say
Whoa so this is what she means...
She means we're bouncing into Graceland

Decision theory

To tux or not to tux: that is the question.

Rituxan (trademark name; generic is rituximab) is a monoclonal antibody. "Monoclonal" simply means that the antibodies are identical (cloned). These artificially produced antibodies bind to the CD-20 protein complex on the surface of B-cells, including hairy cells. This dupes the immune system into thinking those cells are foreign, so it attacks them, with the same responses it would deploy against invading bacteria.

The drawback: rituxan can't discriminate between normal B-cells and hairy cells. It's genocide; the stuff just kills them all (or rather, it paintballs them and leaves your own body to do the dirty work on itself). Then the body grows new B-cells. You hope, you pray, that the new population doesn't include any hairy cells, or at least not so f-ing many.

In HCL, rituxan doesn't work very well all by itself. 8 weekly doses does markedly better than 4, but the response rates using rituxan alone, in previously untreated patients, are nowhere near as good as 2-CdA. But what about a combination of the two?

Those of you who've followed this blog may remember that early on, I considered enrolling in a clinical trial now underway at MD Anderson in Houston. They're testing a regimen of 1 week 2-CdA + 8 weeks of ritux starting 28 days later. In 13 patients treated with this regimen,

the CR rate was 100% with eradication of MRD (minimal residual disease)... in all but 2 patients after completion of the sequential therapy. No additional toxicity was observed with the combination compared with historical experience with 2-CdA alone (Hematol Oncol Clin N Am 20 (2006) 1125–1136).

That sounds pretty exciting, but it's only 13 people. Statistically, 2-CdA alone would have produced 9 or 10 CRs in a group that size anway. Still, if this trial works out, this regimen might become the new front-line therapy in a few years. If I do 8 weeks of rituxan now, my treatment would be almost clinically equivalent.

Let's be realistic here: this is not aspirin. My HCL friends haven't experienced serious side effects, apart from the few hours during and after the infusion (see Experience). But bad stuff does happen. Patients have died from cardiac arrest and kidney failure. A small number — all of them already suffering from lupus — came down with progressive multifocal leukoencephalopathy, a horrifying virus that kills brain cells and, eventually, you. You can get pulmonary toxicity and other nasty effects. However, most of the patients who've used this drug were being treated for other leukemias and lymphomas (not for HCL), so they were a lot sicker than I am and thus more likely to suffer side effects. Still, the reality of risk has to be faced. (That sentence sounds a lot nicer in passive voice.)

So here's my decision theory, so far.

Reasons to tux:

• A good-to-excellent chance of achieving complete remission (less than 1 percent hairy cells).
  
• A fair-to-good chance of achieving complete molecular remission (no detectable hairy cells).
• If I'm gonna do it, now's the time. Ritux doesn't do well once the population of hairy cells gets larger. If I wait, I'll have to do another round of 2-CdA before I can get much benefit from rituxan. On top of that, I have the flexibility in my life and schedule right now to do the treatment without drastic effects on my job and my family.
  
• A fair-to-good chance of a CR lasting 5 years or longer. New, better, more targeted drugs might be ready by then. If they are, I might not have to drag my body (and my family, and my friends, and you) through another round of 2-CdA.

Reasons not to tux:

• In HCL, the relationship between the degree of remission and its duration — the time until symptoms reappear — is not straightforward. I'm at 5-10% hairy cells now. It's entirely possible I could stay this way for 2-4 years, or more, without treatment. Conversely, even if I achieve a complete molecular remission, the HCL could still come back in less than 5 years.
  
• Immediate risks from rituxan infusions.
• Longer-term rituxan side effects. I'm still coping with daily post-2CdA headaches (see my blog entries from January). Headaches are a low-grade side effect, not life-threatening; the medical literature barely tracks them, so there's no real way to know if the 2-CdA might have caused them. (In higher doses than I received, 2-CdA is neurotoxic, hence my suspicions.) Rituxan might make them worse, or slow my recovery, or both. Can't know in advance.
• What WAID and John said, about not doing a treatment just to get nicer numbers, and about handling HCL as a chronic disease.
  

Seeing Dr. B tomorrow. My main questions for him: what's your clinical experience with rituxan? Side effects? What's the timeline for the other drugs now under development? What do you think of their chances for success?

And most of all — if you had HCL, what would you do?

Experience

The only thing for it is to think.

This week I re-read everything I could find about Rituxan: journal articles, drug information sheets, blog entries, cancer forums. I also asked other HCL patients about their experience.

Once again I'm outside the norm. 85 percent of patients — 17 in 20 — get a complete remission after one treatment with 2-CdA. 10 percent — 2 in 20 — get a partial remission. That would be me. The other 5 percent — 1 in 20 — get no benefit at all, or not enough to matter.

WAID (stands for whatamidoing), in California, is in the 5 percent. Following diagnosis in 2003, at age 31, she tried 2-CdA twice. It did nothing. Then she did a couple of rounds of Rituxan (only), with unimpressive effects. Her latest regimen is ritux + alpha interferon, which seems to be working a bit better. The Rituxan gives her a mild, temporary case of anemia, knocking her hemoglobin down about 1.5 points and reducing her white blood counts, but not dramatically. So far, her counts bounce back after 2 months or so. I've had slightly more problems every time I've taken it, but overall I still have no complaints. She can control the side effects during the infusion with antihistamines and steroids. In my experience, the reports have been much scarier than the actual experience.

Judging by her many responses on the HCL discussion board, WAID knows a lot. Her advice: Since I assume you'd rather treat yourself, as a whole human being, instead of just creating a prettier set of numbers on the lab report at any cost, I'd say you should ignore the BMB results for now and see how you do for the next month or two. She suggests a second opinion from one of the major HCL researchers, Tallman at Northwestern, or Savens at Scripps.

Meanwhile, Pat says having 5-10% really isn't that bad, as your blood levels are coming up nicely! 200 for platelets... oh man, it's been a long time since i've seen that, heh heh... But concerning side effects of the Rituxan, as long as you take the precautions against "reaction," you will do just fine. Everyone who was a little apprehensive was pleasantly surprised how smooth the Rituxan treatments go.

Carolyn: I was treated with 2-CdA in October 2005 and had a BMB in mid December with a residual 5-10% Hairies (I think I had >90% at diagnosis). My counts have remained pretty stable for over 2 years and I never have had any real symptoms that can't be attributed to age, etc., except maybe the overwhelming tiredness that sometimes comes on me. That may be my age as well.

It's your cancer — do it the way you want to. Nice. Thanks, Carolyn.

And Paula: My last BMB was done the first of December and I am at 8% hairy cell, same as I was four years ago when diagnosed. My levels are all at low normal with the exception of ANC and it is at 1500, almost low normal. Sooo... I am just sitting around living life until something more goes south. She still hasn't had any treatment.

Tim failed 2-CdA twice. Then he started the HA-22 clinical trial, but had to back out of it after building up immunity to the drug. Krietman at NIH recommended 2cda+Rituxan, Army Doctor #1 recommended wait until I get worse. With his primary doctor (a third), Tim decided it was too early for another round of 2-CdA, only a year out from his 2006 treatment, with his bone marrow still recovering. So he and his primary doctor went with ritux. Considering the fact that Rituxan does not work very well in patients with marrow that is 50-100% involved, I asked to start early, rather than late and hit the HCL while it was not as established in my spleen and marrow. Sept-Oct 2007 I received 8 weeks of Rituxan. At the start I had so-so counts and knew my marrow was around 15-20% involved with HCL. I am doing pretty well right now. I tolerate the Rituxan very well, no real side effects, so that is also a contributing factor to deciding to continue to get treated with Rituxan to try and maintain my current condition and try and keep the HCL from regaining a foothold.

Finally, John got his diagnosis 14 years ago. He's done 2-CdA five times. Since 2002, I have been out of remission and have tried Rituxan. Rituxan does not have serious side effects, except while it is being administered. You can develop rigors. You have chills and shake. I did. I stayed home from work the next day and then resumed working.

Basic advice: Ignore the bone marrow. Watch your counts. You can live nicely with low counts. I have. I am never sick. This is a chronic disease. Once your ANC gets down to 1.0, it is time to treat. If your platelets get below 100, it is time to treat.

Don't make yourself crazy with this disease. I know now that I often embraced anxiety and fear in the past. Today I am much more relaxed about living with HCL.

All this experience is worth a million times more to me than dry statistics from the medical literature. Sometimes I think the Internet's an act of God. It's a complete miracle for people like me. With a disease that affects only 600 Americans a year, how else would I ever find the others?

Next post: how to decide.

Fear

Bad news today. My biopsy results came in, and they don't look very good.

Hairy cells still make up 5-10 percent of the bone marrow sample. That's a remission, but only a partial one, and not a very good one at that.

Next stop, another visit with Dr. B on March 3. We'll discuss whether to do a round of rituxan, or whether to wait and watch for symptoms. Usually rituxan is a series of 4-8 weekly treatments. Each infusion takes a few hours. Side effects can be very serious.

At times like this — as if I'd ever had a time like this before — it helps me to remember the Litany Against Fear, from Dune:

I must not fear.

Fear is the mind-killer.

Fear is the little death that brings total obliteration.

I will face my fear.

I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.

Where the fear has gone there will be nothing.

Only I will remain.

Biopsy

• Hemoglobin 13.2 (normal 14.0-17.3)
• Absolute neutrophil count 2.2 (normal 1.4-7.5) — NORMAL
  
• White blood cell count 3.1 (normal 4-10)
• Platelet count 200 (normal 150-450) — NORMAL

Yesterday I had my followup bone marrow biopsy, or "BMB," as they call it around the Cancer Center. I'll get the results on Friday, or Monday at the latest. They'll tell me whether I've had a CR (complete remission, with no evidence of disease even at the molecular level), a GPR (good partial remission, with up to 1 percent hairy cells visible on flow cytometry), a PR (partial remission, up to 5 percent hairy cells), or — worst case, very rare — no real remission at all.

Dr. B's assistant, Ms. I, did the biopsy. Not quite as easy as last time, partly because she was teaching a student to do the job.

First Ms. I injected lidocaine deep into the upper part of my hipbone, just above the waistline on the right side of the back. This is the worst part, because you can feel the needle. (I don't really understand how a needle can penetrate bone, but it does.) The lidocaine burns like the fires of hell, but in a few seconds you're numb.

Next came the aspiration (narrow needle, for pulling out a fluid sample). Pressure, probing, pain, but not too awful. I just kept on breathing, trying to stay Zen. At the first biopsy in October, they couldn't aspirate at all, even though they tried three times, because the matrix of hairy cells was too thick. This time, it went well, and Ms. I had no trouble sucking out a cubic centimeter of fluid.

After that came the core sample (thick needle, takes out a 1.5 centimeter, narrow, circular core of bone plus bone marrow). These really f-ing hurt. This time Ms. I showed the student how to do it, guiding her hands. The night before I'd heard a doctor friend talk about learning to do this 25 years ago. Now it was my turn to sacrifice my body for the good of the profession. They have to learn somehow.

The student's unconfident, tentative pushing and wiggling actually hurt much more than Ms. I's firm, expert tapping and pressing — but at least she didn't push right on through to sample my kidney instead. Her lack of expertise showed up when they looked at the sample; she'd broken it in half, making it unusable. So Ms. I had to take another core. That's still better than last time, when they did three tries at an aspiration and two core samples — five stabs in all.

Today I feel like I've been kicked in the back with a steel-toed boot. Fortunately it's like a bad bruise, only hurts when I sit down wrong or try to twist too much.

Had more blood tests, too. Results are mixed. Hemoglobin and red cells are still climbing nicely. According to UM standards my hemoglobin's even normal now (at 13.2), since they use 13.0 as the bottom of the range. But the WHO standard for normal hemoglobin in men is 14.0, so I'm hoping it'll climb a bit more (and it should since my red cell count is still slightly low). Around mid-March I expect it'll all flatten out.

On the other hand, my white count is subnormal again. Not terrible, but still low. Could be (said Ms. I) because I've got a cold right now; tends to bring the white counts down. She didn't see a reason to worry about it. So I won't. Or at least I'll try.

Waiting for Friday's test results now... nervous but hopeful.

New normal

• Hemoglobin 12.3 (normal 14.0-17.3)
• Absolute neutrophil count 3.1 (normal 1.4-7.5) — NORMAL
  
• White blood cell count 4.1 (normal 4-10) — NORMAL
• Platelet count 255 (normal 150-450) — NORMAL

New blood work, first in a month (see updated charts). Progress is happening — only hemoglobin remains subnormal.

I should be happy, but I'm not. Chronic optimism works against me here. I hoped for, expected, then simply assumed faster change; I thought all the levels would be well inside the normal range by now. Instead, hemoglobin rose only 1.3 points — less in the last 4 weeks than in the 2 weeks before that. Still a long way to go to hit 14. Now I'm extending the horizon, thinking in terms of the 120 days it takes your bone marrow to replace your entire blood supply. That'll be around the middle of March.

In one way, though, it's reassuring. I'm still plagued by intense daily headaches. I'm a basket case by mid-afternoon most days. The low hemoglobin might contribute to this. Nobody seems to have much of a better idea.

My doctor hypothesized they might be rebound headaches from the ibuprofen I was taking, a lot of it, for various reasons: hip muscle spasm, headaches, dental inflammation, more headaches. I'd heard about Excedrin rebound headaches, but I always thought they came from withdrawal from the caffeine in Excedrin. Turns out you can get rebound headaches from almost any analgesic — ibuprofen, aspirin, Vicodin, even acetaminophen — if you take it for more than a week or 10 days. My doctor told me about this on Tuesday and I stopped the ibuprofen completely the following day, noting that it can take 4-7 days for rebound headaches to subside. Well, today is day 7 since I took any painkillers. The headaches did diminish at first, but in the last couple of days they've come back, just as strong as before.

Another theory was eyestrain or outdated eyeglass prescription, but I had a full eye exam yesterday and they found no problems. They're raising my reading glasses strength to +1.75 from +1.5, but the doctor said that minor change shouldn't be causing massive headaches.

Chemo is a massive bodily insult, and it just may be that the headaches will go on for a while no matter what I do.

Meanwhile I’ve also learned some jaw stretches and massage trigger points for my nighttime teeth clenching. They do seem to be helping, and my teeth are finally getting less sensitive. For a couple of weeks there I could hardly eat, since everything – cold, hot, sweet, crunchy, spicy — hurt my teeth. I'm also trying self-hypnosis and binaural beats, both very relaxing but not an instant solution.

One piece of really really really good news: the MRI results showed no evidence of avascular necrosis in my hip joints. (They thought they'd seen this on my CT scan just before chemo.) I was looking at major surgery if that had turned out to be true. Hard to understand how they could see something on the CT scan that doesn’t show up at all on the MRI, but according to Nurse M the MRI just makes a much better picture.

I'm working more, survived 2.5 hours of meetings on Friday, but I'm really only up to about 60 percent. In the gym I’m working out at full steam, can drive my heart rate to 175 in sprint workouts with no problems. Not bad for a 50-year-old guy whose maximum heart rate is supposed to be 170. So I do feel better physically, even if my head pounds all afternoon most days and I can't work as much as I want to.

My therapist at the cancer center talks about finding a “new normal” in life after cancer. Much as I want to jump back into my old life, forget this ever happened, it ain’t gonna be like that. I have to go slower, take more time to re-enter, readjust expectations and commitments.

I hate that. I once told somebody that my philosophy of life was to run, flat out, until I had to stop. "Slow" isn't really in my vocabulary. At least until now.

Inverted

My next blood test won't be until Jan. 28, so no new numbers today. Feeling better and stronger every day in most ways. Still having colossal headaches from nightime teeth clenching, but I bought some self-hypnosis CDs that help calm the jaw muscles down at night. So do yoga inversions: the inversion sling, headstands, shoulder stands. I never realized you could stretch the sides of your face in a shoulder stand. Plus, it reboots your brain.

Think about it: gravity does a lot of damage. Skin, breasts, testicles, muscles, ears — everything eventually sags under its force. That's happening to your internal organs as well. Spending a few minutes upside down every day reverses the direction.

A lot of people think of yoga as some kind of fringe thing, but to me it's essential. It does more to rejuvenate, strengthen, and calm me than anything else. There's ancient, real knowledge here, about how body and mind connect. And unlike a lot of exercise modes, you can do it all your life. BKS Iyengar is 89 years old and still practices 4 hours a day. Extreme, OK — but I wouldn't mind being able to do what he does when I'm 89.

Monday I had an MRI for possible avascular necrosis in my right hip joint. Amazingly fast — I was in and out in 50 minutes. Man is that MRI machine ever loud. They gave me earplugs but my ears still rang all day afterward. Forgot to take off my two silver rings, so the magnet made my ring fingers quiver, like scared little minnows attached to my hands.

No results yet, and I don't really want them, either. Now that I know the problem is there, I can feel something that might be related — pain at the adductor muscle attachments — but only in extreme hip positions such as certain yoga poses. I'm taking it easy on those, having no problems at all walking, riding a bike, etc. I'll wait for the doctors to evaluate this.

Meanwhile I came across another great HCL resource: Rob's User Friendly HCL Site and Chat Room. Lots of current and former HCL patients, very welcoming, some good information here.

Only numbers

At my last post, on New Year's Eve, I'd just received upbeat blood test results. There's been more good news this week, especially being able to work out again. Still going at a reduced intensity, but I'm doing full-length workouts now — weights, cycling, swimming — and it feels like only a matter of time until I recover all my strength.

Unfortunately, that wasn't the whole story. Bad insomnia plagued me all week, waking me up for good at 3 or 4 in the morning. Thursday I managed a full work day, about nine hours more or less straight through on a grant proposal I'm writing with half a dozen colleagues. Friday morning, another four hours on that proposal. It was intense work: a lot of concentration, rapid thinking, staring at a computer screen, pressure to meet our deadline.

It felt great to work again, but by Friday afternoon my head was pounding like a taiko drum. Now it's Monday, and the headache's still hanging around, even after going back to bed for a while this morning. My teeth hurt again from nighttime teeth grinding. My bite splint helps a bit but doesn't solve the problem. Did some reading about bruxism and discovered that bite splints probably can't fix this, but nobody really has a better idea, even though about 20 percent of the population suffers from this.

Insomnia + teeth grinding = headache, maybe, but I still don't understand why it's so much more intense than it's ever been before. (These aren't new problems for me.) I ruled out various possible causes — supplements, caffeine, squinting — by cutting them out completely for three days, with no effect. I'm praying it's not a cracked or infected tooth.

So I'm seeing this headache as part of the recovery from chemo. However tempting, it's unrealistic to expect to jump back into my normal work life overnight.

Last week's test results are only numbers. They're good indicators of important variables, but they don't tell the whole story about what a week of intravenous poison did to my body, or how much recovery time it still needs. I have to keep taking it a little easier for while, rest more, not expect too much too soon.