New year

• Hemoglobin 11 (normal 14.0-17.3)
• Absolute neutrophil count 2.7 (normal 1.4-7.5) — NORMAL
  
• White blood cell count 3.5 (normal 4-10)
• Platelet count 217 (normal 150-450) — NORMAL

New charts of my blood counts.

It's New Year's Eve. And time to celebrate. This treatment is working. Another milestone: normal neutrophil counts. That means my immune system is almost completely functional again. Lymphocytes are still low, 0.4 (normal 0.8-5.0), but that's double what they were 2 weeks ago.

At 11, hemoglobin's about where I thought it would be. Still three points to go before I hit normal, but with this much I'm nearly out of the woods. I still feel a bit less energy than usual, but I can go all day now. This is fantastic.

I have to say that for me — and not just because of the last three months — 2007 basically sucked.

So Happy New Year, everybody. 2008 looks really good.

Comeback

No blood test this week, so no objective indicators — but I'm feeling better fast.

My extended family all made the trek to Ann Arbor for Christmas, six from North Carolina and four from Connecticut. They arrived late on the 22nd. That day and the next couple of days I got pretty tired and had to take naps in the afternoon. But starting Christmas Day, I abandoned the naps. On the 26th I spent 25 minutes on exercise machines, 25 minutes of yoga, then took an almost 2-hr walk with my brothers. And no nap. That would've been inconceivable a week earlier.

My mental hemoglobin calculation goes like this: I was at 9.1 on Dec. 17, four weeks after starting chemo. The median patient reaches normal (14-17.3) eight weeks from the start of treatment. Should be a linear progression, since it's based on red blood cell genesis replacing 1 percent of cells per day. So I should be going from 9.1 to 14 (or higher) in four weeks. That would be a gain of at least 1.25 each week.

It's been eleven days since Dec. 17, so I should've gained about 2 — which would put me at 11.1 today! Feels like it, too. Next test coming on Monday. By then white counts should be normal, except lymphocytes.

Strange: I've been dreaming a lot recently. No dreams at all during and after chemo, or at least none that I remember. Maybe my brain was too oxygen-starved to have any.

Midway

• Hemoglobin 9.1 (normal 14.0-17.3)
• Absolute neutrophil count 1.0 (normal 1.4-7.5)
• White blood cell count 1.3 (normal 4-10)
• Platelet count 246 (normal 150-450) — NORMAL

New charts of my blood counts.

Yesterday was my 2-week followup with Dr. B. He showed up 2.5 hours after our scheduled appointment, but apart from almost falling asleep in my chair, I didn't mind. Now I know to always try for a morning appointment with him.

The best news: I'm out of the danger zone for opportunistic infections. My neutrophil count has climbed higher (1.0) than before I started treatment (0.7). That's still below normal, but anything 1.0 and above is OK. Lymphocytes, the second most numerous type of white blood cell, are at 0.2 (normal 0.8-5.0). Dr. B said lymphocyte counts might stay depressed for 2 years. Fortunately this has few or no clinical consequences, so the neutrophils (see the picture) are the thing to watch.

Now I can finally go out in public, stop worrying so much, and drop some of the more draconian precautions. No more face masks. I actually went to the YMCA with Gabrielle to pick up Luka from day care — first time I've done that in 5 weeks. But with family coming for Christmas in just four days, in general we'll continue the cordon sanitaire through the holidays.

For one thing, my hemoglobin's unchanged, at 9.1.

Hemoglobin, also spelt haemoglobin and abbreviated Hb, is the iron-containing oxygen-transport metalloprotein in the red blood cells of the blood in vertebrates and other animals. In mammals the protein makes up about 97% of the red cell’s dry content, and around 35% of the total content (including water). Hemoglobin transports oxygen from the lungs or gills to the rest of the body, such as to the muscles, where it releases its load of oxygen.

At 2.82, my red cell count is just a hair higher than last week's 2.79 (normal 4.5-5.9). So I'm oxygen-starved until that number comes up. Red cells live about 120 days. They travel 200-300 miles during their lifespan. The body normally replaces them at the rate of about 1% new red cells each day. We can see this happening now, since reticulocytes — new, immature red cells — make up a higher proportion than normal of my total red count. The figure I'd seen in the literature was 8 weeks from start of chemo to normal hemoglobin. In any case, it'll be at least another week or two before I have real energy again. Disappointing, but that's leukemia for you. Also a good reason not to get sick anytime soon. I feel crummy enough without having a cold.

From now on, I'll only get blood tests every 2 weeks. I won't see Dr. B again for 2 months. Then it'll be time for another bone marrow biopsy, to see exactly how well the treatment worked. Fingers crossed.

While I wait, I won't be posting so often to this blog. I need to start working again, anyway, though until that hemoglobin comes back, concentrating on anything for more than five minutes feels like swimming in molasses. I'm not too good at keeping a reduced schedule — it's more of an all-or-nothing thing with me — but I guess it's time to learn.

Upcrawl

Decided to use this instead of "upswing," which seems way too dramatic for the pace of progress here.

Yesterday was actually pretty good for about half the day. Got up at our normal 6:45 AM and helped get Luka ready for school. Went for a walk in late morning, instead of waiting until afternoon when I'm already tired. That energized me and I felt OK until late afternoon, when I flagged and my headache came back. Still, not bad.

Today: not so great. Tired and draggy in the morning, hard to shake the headache. Both knees hurting a lot, maybe from walking too much, but no other exercise works and I'll go completely nuts if I don't use my body. Finally got a walk in around 4 PM — and a good thing too, with what sounds like a monster snowstorm blowing in from Indiana tonight. Tomorrow I'll probably be housebound.

Boredom. A good sign, I think. Until now I've been either too tired or too anxious to be bored.

Money

• Hemoglobin 9.1 (normal 14.0-17.3)
• Absolute neutrophil count 0.7 (normal 1.4-7.5)
• White blood cell count 1.0 (normal 4-10)
• Platelet count 200 (normal 150-450) — NORMAL

Ended up with a pretty good day yesterday (Weds.), despite everything. Surprised myself by starting off on a walk and going for a full hour, slowly of course, but at least moving. After that, a few minutes lifting light weights, 30 minutes of yoga. Then into bed with ice packs for my right hip and knee — now sore from stretches I'm doing for my hip — and a one-hour nap. Then I actually felt OK for a few hours.

Later, as if the HCL just had to show me who's boss around here, I had another horrible night, awake 3-5 AM. This morning the infernal headache blasted back in like a monster truck, an evil tom-tom pounding my head into hamburger. On top of that, my entire ribcage burned: pectorals trashed from lifting 8-lb. dumbbells maybe two dozen times. Sixteen f-ing pounds.

Went for more blood tests late in the morning. All the counts are up a bit, especially compared to Monday, when they'd dropped back as the transfusion effect wore off. The best news: platelets are finally NORMAL, well inside the range. White cells and neutrophils still super-low, very risky for infection. My hemoglobin level's still dismal, which is why I have these tremendous headaches, but today's 9.1 looks a lot better than last week's 7.9. I've got some hope of hitting 10 by this time next week. Once I get there, I should start to feel semi-normal. Here are new blood count charts.

Let's talk money.

Frankly, I haven't paid a lot of attention to the hospital's billing notices. That's because I work for a major university with outstanding health insurance plans, so my bills always say do not pay — insurance reimbursement pending. Yeah, I've forked out a few $15 copays, and not every single thing is covered, for example the emergency visit to my dentist on Tuesday. But in general I don't even have to think about how much this all costs. I don't even have to fill out forms. I just show my card and walk away.

But from the cursory glances I've given the billing statements, I'd guess this episode has already cost at least $20,000. Possibly $30,000. Every blood test is a few hundred bucks, even though it takes them less than two minutes to draw the blood and the results come back in under half an hour, the blood having been examined automatically by a machine. CT scans are $1500 a pop, and they did three of them. X-rays, the bone marrow biopsy, flow cytometry, doctor visits. In the US health care system this adds up to unbelievable sums.

This isn't to say that my insurance company is actually paying out that much money. No, it gets a steep discount, on the order of 60-70 percent. God help you if you don't have insurance: then you pay retail.

When we lived in South Africa in 2003-04, my aging father-in-law flew in from Miami for a visit. The night he arrived he collapsed in his room with a brain seizure. He then spent over a week as an in-patient at the best hospital in Durban. He traveled by ambulance, had every brain test known to medicine, saw neurologists multiple times, had a sleep test, numerous blood tests, meds up the wazoo, basically everything they could throw at him. You may think South Africa's the Third World, and a lot of it is, but the medical system there is second to none; this was high-tech medicine at its finest.

Total bill, including 8 nights in a private hospital bed? Less than $6,000. For the same thing in the USA, you'd be lucky to walk out for $30,000.

Editorial, since it's an election year: the US health insurance system is totally broken.

Insurance is supposed to be a collective bet. We all pool our money. When somebody gets sick or injured, they take what they need from the pot. Since we never know when this might happen to us, or how bad it could be, it always makes sense to pay in your share, even if you never end up using it. If you lose, you win. You can be the healthiest guy on the planet. Then you walk out of a Starbucks, get nailed by a drunk driver while crossing the street with your latte, and end up paraplegic with a half-million-dollar hospital bill. Ask me last summer and I'd have told you the insurance companies were making a bundle off me. Now....?

I'm all for free market solutions when they work, but in medicine, they don't. The problem is that you (or your employer) shop for the cheapest insurance, not the cheapest medical care. You do not in fact want the cheapest medical care. You want the best. So the real market competition is at the level of the insurance, not the medical care.

And how do insurance companies keep prices down? They try to be sure that their pool of customers is healthier than everybody else's. That means excluding people from coverage if they have pre-existing medical conditions — like my self-employed friend Todd, who's been told that no company in California will cover him as an individual after his COBRA extension runs out next year. That's just one way we've ended up with millions of uninsured Americans.

The big irony is that we end up pooling our money to pay for them anyway: through higher prices for medical services, through higher taxes, through all the secondary expenses of supporting sick people who can't work. It's stupid. Medical insurance ought to be a basic right, not a privilege of the wealthy. It ought to be single payer, with everybody contributing their share and everybody able to draw out whatever they need.

That's not just the only sane solution. It's also the least expensive one. For the best thinking on this, read Paul Krugman's columns in the New York Times. (Try this one for starters.)

Hanging

Lost momentum on the blog there for a few days, mainly because there's not much to report. Over the weekend I had more energy from the transfusion. I put most of it into playing with Luka and trying to catch up on the hopeless household backlog of minor repairs, finances, and cleanup. My hip muscle spasm continued, limiting my movement a lot. But I've minimized it with ice, rest, and ibuprofen. Today it finally feels like it's nearly over. I'm increasingly convinced it's not related to whatever's going on in my femur heads.

Since Sunday night the transfusion's been slowly wearing off. The telltale fatigue and eternal headache are settling in like a throbbing fog as my hemoglobin level sinks. Went for another blood test yesterday morning, but the nurse never called me with the results. I didn't have the energy to pursue it (partly because those readings won't mean much, since they're skewed by the transfusion). Another blood test coming Thursday.

I thought I had an appointment with my dentist on Saturday afternoon, but when I got to her office at 2:30 no one was there. She has a direct number for emergencies, and though my teeth were feeling better I decided to call her. I've been seeing her for 5 years or so and we've got a really nice relationship, one of those ones where you feel like you can ask for a favor when you need it.

On the phone she liked my theory that Nystatin — the mouth rinse I've been using for thrush, a horribly sweet goo that requires swishing 4 times a day — might be eating away the enamel and causing the tooth sensitivity. She would've made a special trip to see me anytime, but I decided it could wait until today. She didn't see anything wrong, so we talked about ways to deal with the sensitivity, mainly by using fluoride right after the Nystatin, or maybe trying to get a pharmacist to reformulate the Nystatin in some non-sugary base. For the time being, I've stopped the Nystatin and my teeth are more or less back to normal: lousy but liveable.

Tonight (which is Tuesday, despite the date on this post) I'm basically back to where I was last week at this time, the night before the first transfusion. By now my bone marrow should be putting out red cells and hemoglobin, so I should be on the upswing. But it takes 8 weeks to get to normal, and this is only the end of week 2. The nurse warned me I might need more transfusions before my own cells really come up.

We'll see what tomorrow brings. Right now I can barely move. Giant vise grips are closing on my temples. My eyes hurt. Hope I can sleep.

Pan into Fire

Physically, I felt better today than I have in three weeks.

That's strange, since today's news ain't good.

Yesterday, trying to take advantage of the hemoglobin reprieve from Wednesday's transfusion, I managed two half-hour walks. Then I spent 10 minutes on a recumbent bike — nowhere near as tiring as the last time I tried that a few days ago — and did a few relaxation asanas. Had a slight fever off and on all day from the transfusion.

That morning I'd read up on avascular necrosis of the femoral head and neck. My CT scan showed trouble there, suggested followup X-rays and MRI. Dr. B had sent me for X-rays, but I was so focused on the leukemia that I just didn't think about it much. I realized I'd better face the music.

That might have been a mistake. By bedtime I started having the (to me) telltale signs of an impending muscle spasm. (Psychosomatic?) By 3 AM my right hip was on fire. I had to haul out the Vicodin.

Bone's alive. Avascular necrosis means that part of a bone loses its blood supply and begins to die. It can recover, and in fact bits of bone are always dying and being replaced by new, living tissue, but in necrosis the dying outpaces repair and eventually becomes permanent. The blood supply can be cut off temporarily or permanently, by trauma, arterial blockage (caused mainly by alcoholism), steroid use, half a dozen other things. Or it can be "idiopathic," meaning we have no idea why this happened to you. In my case, aikido, hyperextension of the hip joint in yoga, maybe the 4 cortisone injections I had in the 1990s, might be causes. If I have this. It's not uncommon: 10-20,000 cases a year.

One day in the winter of 2001, Gabrielle and I went cross-country skiing for a couple of hours in 15° weather. When we finished, we jumped immediately into the car, drove somewhere, spent perhaps an hour sitting in a very cold car. It had been a huge workout — and if you ski you know that the back of the hip does most of the work — but I'd never stretched. When I got out of the car I could tell something was wrong. By the end of that day my right hip ached fiercely. This continued for several days while I essentially ignored it and tried to power through my usual regimen of cycling, stretching, yoga. By Day 4 it hurt so much I couldn't walk. Standing in one place hurt even more than walking; the tiny postural movements your hips make to keep you balanced burned like fire. By then, with one muscle after another trying to take over the load from the other, exhausted ones, the spasm had spread to the entire pelvic girdle. The following morning no position at all — not even lying down — was pain-free. I remember I was supposed to deliver a presentation with Tim Killeen — now director of NCAR — at 8:30 AM, but I literally could not stand up. I had to call and cancel 30 minutes before the presentation. Tim could not have been happy about that.

I finally went to see my doctor. He laughed when I told him about it. You kicked your own butt! He prescribed Vicodin, muscle relaxants, and bed rest.

It worked. I had to stay flat on my back in bed for 3 days, loaded on Vicodin, but after that the spasm subsided and I gradually returned to normal over the space of a few weeks. Even 3 months later, though, the muscles in that hip remained stiff.

Since then this same hip spasm syndrome has recurred, four more times. The etiology was always the same: major exertion with failure to stretch afterward, either preceded or followed by prolonged sitting or lying down. Once after a night on an old, rock-hard futon; another time during a marathon drive from South Africa to Namibia. Right now, a mild workout following a week or so of lying down most of the time. I learned to handle it: eat ibuprofen like candy, ice the hip like crazy for a few days, stretch slooooowly and gently, massage.

Anyway, I always thought of this as your basic sports injury, probably a torn piriformis. Now it seems like it could be a symptom of whatever's going on in my femur. Maybe the skiing produced the original trauma; maybe not. Maybe avascular necrosis isn't it. But Nurse M, who saw the recent X-ray results, told me today that they've asked for further evaluation.

That means an MRI. And from what I've read, they only do an MRI if they think you might have this. It's pretty bad news. Avascular necrosis never goes away on its own. It can take a few years to progress, but it virtually always ends in total degeneration of the hip joint. By the time you get symptoms like mine, the treatments are basically all surgical. Core decompression (carving out the core of the bone in hopes that it will revascularize and repair); this doesn't work very well (15-20% success). Metal-on-metal joint socket repair. Total hip replacement: those artificial joints only last 10-15 years.

Nurse M requisitioned the MRI on an urgent basis. I'm trying, trying to hope that this'll turn out to be something less serious. Meanwhile I'm doing what's worked before to make the spasm subside. But once again I feel like I've entered a dark tunnel. Nothing to do but grope on through and hang on.

Transfusion

• Hemoglobin 7.9 (normal 14.0-17.3)
• Absolute neutrophil count 0.7 (normal 1.4-7.5)
• White blood cell count 0.9 (normal 4-10)
• Platelet count 134 (normal 150-450)

Yesterday and the day before were the worst yet. Horrendous headache, fatigue, shortness of breath. Just getting up from a chair made my heart pound. I could barely move, yet sleep eluded me. My pulse pounded in my ears, a sickening squishy sound. Even lying in bed it ran about 75. (My normal: about 55.) Yesterday I woke up at 4:30 AM and couldn't get back down, even though I felt like I'd been run over by a truck.

So they gave me a blood transfusion. I had no idea how long it would take. The answer: a long time. Dragged myself to the hospital at 1 PM for blood tests. Hemoglobin down to 7.9, so no wonder I felt like roadkill. They scheduled the transfusion for 2 PM, but cross-matching took longer than expected and I didn't get into my chair until 3. The runner didn't show up with the first unit of blood until 3:30. By then I was practically moaning.

Consent form: common risk of fever, chills, vomiting, allergic reaction. Uncommon risks of kidney and liver failure (mostly in old people). 1 in 100,000 risk of infection with HIV, hepatitis, or some other horrible virus. I signed off. The nurse put in my IV. I swallowed "premedication": Tylenol and Benadryl, to fend off fever and histamine reactions. Then a complicated, extremely careful cross-checking procedure, with one nurse reading off my information to another, who double-checked her.

Finally the transfusion began. Each unit of blood took about 1.5 hours to pump in; they gave me two. My headache disappeared, but I stayed very groggy, due no doubt to Benadryl on top of no sleep. My temperature rose to about 99.5° (my normal's 97.8°). After the second unit, they kept me there for a half-hour observation period. Went home, still groggy, and put Luka to bed, then crashed myself, still running a slight fever. Woke up at one point in a puddle of sweat, but this didn't recur and I felt more or less normal this morning.

Feeling like a million bucks would not be a good way to describe my current state. Maybe ten bucks. Definitely better than yesterday morning, when I felt like the national debt. Still tired, sore all over.

Dr. B's excellent nurse said the transfusion should boost my hemoglobin to somewhere in the 9-10 range — still below where I'd feel semi-normal, but a lot better than the 7s and 8s. The effect might last a week, but it'll decline during that period. This should take me past the bottom of the trough in my own production of red cells and hemoglobin, which should start to finally rise next week. But I might need another transfusion if it doesn't pick up quickly. Median time to normal hemoglobin is 8 weeks after chemo.

It's strange to feel somebody else's blood in my veins: actually, two people's blood, since I got two units. I thank them, profoundly, whoever they are. This makes me glad I gave blood a few times, though two more transfusions would probably exhaust my karma. I don't know whether they'll let me donate blood in the future, given the hairy cell, but if they will I'll be doing that.

My statistics show a definite upward trend in immune counts. Platelets recover before anything else. Mine should reach the low end of normal next week! Neutrophil counts have risen back to where they were in October. So the bone marrow's working; it just takes longer to start putting out new red cells and hemoglobin. This part nobody warned me about. I'd focused on the immune counts, but the exhaustion from the low red counts will persist at least a couple more weeks.

Other problems might be coming. Several teeth are getting really sensitive, probably from anxiety-related nighttime grinding, but conceivably from infection. All the lying down is taking a toll on my muscles; I'm prone to hip muscle spasms in this kind of condition. I'd hoped to take a walk this morning, but it's 12° here. Maybe the temperature will come up in the afternoon. Somehow I've got to take advantage of this brief reprieve from total exhaustion to move my body a bit.

Statistics

Here are charts of my immune cell blood counts (top) and red cell/hemoglobin/platelets (bottom). I'll keep updating this as new stats come in. There's a permanent link to this post in About this Blog (top right corner of the blog page.)

About the charts:

• Values listed as "normal" are the midpoint of the normal range, so I'll be OK before I reach the levels on the left-hand side of the charts. (If I were better at Excel, I'd have shown the full range.)
• There's no baseline data for my own normals from before HCL. One day I'll track that down.
  
• The X-axis doesn't represent time proportionally. Times between tests were longer (3 months) from April 2008 to July 2010. In 2007 and since July 2010, tests are only a week or two apart. Dates at the bottom.
  
• Click on a chart to see a larger version.

Virtuoso

• Hemoglobin 8.3 (normal 14.0-17.3)
• Absolute neutrophil count 0.4 (normal 1.4-7.5)
• White blood cell count 0.6 (normal 4-10)
• Platelet count 120 (normal 150-450)
  

You should have a normal life expectancy. This sentence rang in our ears as we left Dr. B's office this morning.

First Dr. B's PA — let's call her Ms. X — entered. No smiles here, but on the other hand, a daunting air of capability. Straight to business: any chest pain, shortness of breath, dizziness? Nausea or vomiting? Then a quick physical exam, then she left to discuss with Dr. B.

One thing I learned from House — an easy character to hate, but one who's usually right — is that I don't really care if my doctors are nice people. I want them to be stunningly, overwhelmingly competent (at least so long as that doesn't stop them from really listening). If they also happen to be nice people, yahoo, but that's gravy. If they need to be arrogant or abrasive to get that edge, that's OK with me.

Dr. B entered a few minutes later. Up on the table please, then we'll chat. He asked me all the same questions Ms. X had just gone over. Then he did the exact same physical exam, hunting for my spleen, which none of the doctors have been able to palpate even though it's enlarged. Dr. B couldn't feel it either, but he knew how to try. I was thinking why is he repeating everything his PA just did? Then it dawned on me: error-checking. Obsession with detail. Need to know from own experience, not just report.

I sat down beside Gabrielle. Dr. B perched on the exam table, began twiddling a paper towel. And launched into a mini-lecture on hairy cell leukemia that could have come from a textbook, except it couldn't, because he knows the insider details no textbook tells. For example: the Scripps studies of minimal residual disease in HCL always find it (MRD), because they do the bone marrow biopsies just one month after chemo ends. But indolent cancers like HCL take longer than that to clear. Dr. B doesn't do biopsies for MRD in HCL until 3 months. As for MD Anderson, things always work better in Houston. The Northwestern team takes the same approach as Dr. B, who knows this because he's talked it over with the head guy. This little talk went on for at least 25 minutes: precise, detailed, tightly organized, perfectly clear. Completely convincing. He answered every question I'd written down before I could ask.

He knew every study I'd read, cited them. Knew my case history cold, including previous conversations with Dr. A about my diagnosis. Knew my blood counts, not just today's but over the last couple of weeks. After hours of poring over papers on HCL diagnostic pathology, I'd decided my HCL diagnosis was correct. Dr. B repeated the chain of reasoning I'd followed. Being fully convinced of this is an enormous relief, because if you have to get cancer, HCL's the one you want. I just read an entire special issue on HCL in Hematology/Oncology Clinics of North America (Oct. 2006), which says that this disease deserves the disproportionate attention it gets because they are so close to a complete understanding — and a cure. That last word's not one you hear often in cancer research.

As for long-term CD4 T-cell suppression following 2-CdA, Dr. B explained why this doesn't translate into clinical immunosuppression. Many immune cells hide in the lymph nodes, the spleen, elsewhere. So low numbers of circulating cells, the kind detectable in blood tests, don't necessarily correlate with an insufficient supply.

I brought up rituxin and BL22. Dr. B knew all about them. BL22's not ready for prime time; it can cause kidney failure. Dr. B has actually treated at least one HCL patient with rituxin after 2-CdA, and would do the same for me if my remission isn't good enough. But he thinks the risk/benefit balance argues for awaiting a relapse before adding rituxin to the regimen. If 40-50% of all patients never relapse, why not see if I'm in that group first before drenching my blood with another toxic chemical. That's what I'd concluded too, but I needed to hear it from an expert.

I have never witnessed a more confidence-inspiring performance in my life. Dr. B's a virtuoso, a medical master at the top of his game. When he wrapped it up with you should have a normal life expectancy, Gabrielle's voice broke. Mine too.

White cells, up slightly, might be starting their rebound. Platelets are recovering fast! The count's up to 120 — it was around 100 at the first blood tests in October, so this is significant. Means I don't have to worry about cuts so much. Also, the spot on my leg turned out to be nothing worse than eczema, not to worry.

But the bad news isn't quite over. My hemoglobin's dropped even further, and may go a bit lower yet. I'm at the blood transfusion borderline (hemoglobin below 8; mine's 8.3). I could get one now if I asked for it. Might buy me a week of higher functioning, take my hemoglobin up to around 10. That would be incredibly nice, since I've been in bed most of the time for nearly 2 weeks. The infection risk from a transfusion is just 1 in 100,000, but there are other risks, such as fever and other complications from an imperfect blood protein match. Dr. B seemed to want to wait a few more days, at least until the next blood test on Thursday. It's easier to track what my body's doing if they don't interfere with it.

And there's a new issue. My CT scan revealed some kind of problem in the bone marrow of my right femur head and neck, possibly the left one as well. Dr. B thinks it's not the HCL; otherwise we'd have seen the same thing in all my bones. He thinks it's probably avascular necrosis, i.e. bone death from insufficient blood supply. Dr. B sent me downstairs for more X-rays right after our appointment.

Not clear what this means or whether it's serious (yet), though Dr. B did mention hip replacement (but more in a long-term-speculating way). Over the last 6-7 years I've had several episodes of intense muscle spasms in both hips, especially the right hip; this could be related. Maybe connected to 13 years of aikido, which does tend to give your skeleton a pounding.

Still, I haven't had a spasm like that in 2 years, and this problem seems minor compared to cancer. We'll see what the X-rays show.

Came home from the hospital, got into bed and sank into a groggy, horrible sleep until 5:30 PM. And I'm ready to do it again, right now.

Switch

Last week we debated whether to take Dr. A up on his offer to change to another physician, after the dosing error episode. Eventually we decided to do it. Dr. A proved extremely graceful about helping us make the switch.

Tomorrow we'll see Dr. B for the first time. It's my first hematology followup since starting chemo two weeks ago. Dr. B is a leukemia expert with an outstanding reputation, so I'm hopeful.

Here's what I want to know:

• What does he think about whether eradicating minimal residual disease might improve my long-term chances? Minimal residual disease (MRD) basically means some tiny number of remaining HCL cells, detectable by flow cytometry or PCR, the most sensitive tests we now have. "Eradicating" doesn't really mean it; they're really talking about reducing the levels below the threshold of measurement. In a Scripps study, 50% of HCL patients with MRD relapsed, but only 6% without MRD relapsed. However, other studies failed to find a link between presence of MRD and relapse rates.
  
• My CT scan shows some problems in the marrow of the femur head and neck, probably on both sides. Might be leukemia, or something else, or both. The radiologist recommended following up with MRI and dedicated X-rays of that area. When do we do this — now, or after the treatment has had a few more weeks to normalize? What could these results mean?
• 2-CdA can produce very long term suppression (several years) of CD4 T-cell counts. What are the clinical implications? Will I be immune suppressed, and if so, how and how much?
• What the hell is this dime-size spot on my right shin that's been itching sporadically for 2 weeks?
  

Took half a Valium last night. (Dr. F had OK'd that last week.) Slept the sleep of the dead until 9:30 AM. Felt great for an hour, then collapsed again. I went back to bed and slept deeply until 3 PM, thanks to our great friends Susan & TR, who spirited Luka off for 4 hours to bake Tollhouse cookies and watch videotapes of 1930s Betty Boop cartoons. Around dinnertime I started to perk up, but I'm ready to sleep again as soon as I post this. Some combination of the Valium and yesterday's workout.

Yawn. Night-night everyone.

Precautions

Hellish night last night. Didn't sleep until after 3 AM, due to pain from a symptom we really don't need to discuss. Nothing life-threatening, just painful as hell. Now I have two new bottles of drugs.

Stayed in bed most of the day until mid-afternoon, when I felt rested enough to try some exercise. 12 minutes at settings 2 and 3 on a recumbent bike. Six weeks ago that would have been an easy warm-up. I'd barely have noticed it. Today it drove my heart rate to 145. After that, an hour of yoga. Managed my first inversions in 2 weeks: headstand, shoulder stand. Wow did that feel good, but it wiped me out. Savasana felt like what it means: corpse pose.

I'm still quarantined upstairs while Gabrielle gets over her cold. Only at night, though. During the day we've dropped the face masks, since she's not coughing or sneezing and Luka's well. My great friend Todd has been visiting from California. He got sick too, two days after arriving, but now seems to have pulled through it. Fingers crossed I don't catch it.

Everybody's using Purell and washing their hands obsessively. We don't let anyone in the house without wiping down face and hands with disinfectant. Mostly nobody's come inside anyway, other than our housecleaner. Except for walks outdoors and trips to the hospital, I haven't visited public spaces at all since chemo started almost two weeks ago. Drove to Walgreen's twice to pick up prescriptions, but there's a drive-through window so I never went inside. If I handle a pen somebody else has just used, I Purell my hands afterward. Luka's poor little hands are beet red and painfully chapped from the constant washing.

There's much more. We use paper towels for everything, except bath towels, which we use only once before washing. Rubber gloves for dishwashing. Lysol wipes for kitchen counters and bathroom surfaces, also doorknobs and light switches. I wear a NIOSH respirator every time I go down to the basement, since we've had occasional mold problems. At the hospital I wear my NIOSH mask, and push elevator buttons by shielding my finger with a shirt sleeve. When Luka comes home from school, Gabrielle makes him change clothes and wash before he can see me.

We backed down on the most puritanical food precautions after hearing, from both a nurse and our doctor, that the restrictions on fresh food weren't necessary. Research data show no difference in infection rates with patients allowed to eat fresh vegetables, peelable fruit, etc. The only things to avoid are uncooked vegetables, unpeeled fruit, raw fish, raw meat, hamburger (because it's heavily handled in processing), eggy stuff like potato salad and egg nog (salmonella risk).

All these precautions seem insane sometimes, but only until I start digging into the medical literature. About 30-35 percent of HCL patients get some kind of infection. I'm no exception; I came down with a mild case of thrush, an oral fungus that makes your tongue look like a dirty white sponge. Nystatin's keeping it down (blecch; tastes of metal and saccharin). Most infections don't get past Stage I or II, as they say in medspeak. But a not inconsiderable percentage reach Stage III or IV. You do not want to reach Stage IV. Stage V, if it existed, would be death. And some HCL patients do get there. Not many, but not none either.

Fungus, pneumonia, herpes zoster (shingles) are the most common. On Monday, after they take another set of labs, I'll start Bactrim as a prophylactic against Pneumocystis jirovecii, a fungal pneumonia common in immune compromised people.

Yesterday I came across the Hairy Cell Leukemia Research Foundation. I'd actually seen the site last week and decided it was dead, but it's not. It's full of survivor stories, as well as accounts of people who went through the Rituximab and BL22 clinical trials. Some of these accounts detail incredibly serious infections: people blown up like balloons, their entire skin peeling off, other horrors you only want to know about if you're me right now. One guy had the bad judgment to blast off on an 800-mile high-intensity road trip four days before starting chemo. He got pneumonia on the second day and barely survived.

Also a lot of hope here: people who've been disease-free for 8, 10, 12 years and more. Healthy and happy. I asked the webmaster to link to this blog, since I'm hoping other patients will find it useful. (Leave me a comment if you do!)

Thanks to the wonders of Google Analytics, I see that at least 150 people have read this blog since I started writing it 2.5 weeks ago. The exact count today is 230, but some are probably duplicates, such as the same person (including me) viewing the blog from two different computers, so I discount the number a bit.