Logistics

Countdown: 19 days to the NCI clinical trial.

• Hemoglobin 10.5 (WHO normal 14.0-17.3)
• Absolute neutrophil count 0.8 (normal 1.4-7.5)
  
• White blood cell count 1.7 (normal 4-10)
• Red blood cell count 3.06 (normal 4.5-5.9)
  
• Platelet count 103 (normal 150-450)

After another few prods, the two docs finally talked. Not sure what happened there, but at least now it seems to be settled that I can do the NCI clinical trial and get most of the treatment here, at the University of Michigan Hospital.

Lots of irritating stumbling blocks. Dr. B canceled an appointment, but nobody told me until I arrived at the hospital. Explanation (or excuse): we thought you were being treated elsewhere. Not true — I was still deciding, and the decision hung on whether my doc here would continue to treat me like his own patient. Felt very much like a door being slammed in my face.

More unreturned phone calls. Finally on Tuesday I went in for another blood test. I'm Dr. B's new nurse, said the very nice person who brought out the lab results. I understand you're being treated elsewhere. So I went through the whole story again, for the 10th time: no, not yet. Want to do it, but first, need to know that the arrangements for drugs and infusions will work. The docs have to talk. Above all, I don't want to do it if Dr. B won't keep treating me here.

The other nurse was OK, but this one seemed to genuinely listen. She made a lot of notes and went off immediately to contact with Dr. B. 3 hours later, the docs had talked. The path starts to look smoother.

Now, lots and lots of logistics. Flying to DC, staying there Nov. 8-14, getting all the cladribine infusions down there since our infusion center isn't open on Sundays. My partner's coming down on Tuesday night, staying the rest of the week so she can be there for the treatments. Meanwhile my amazing-but-true mother's coming up here to take care of Luka the ninja warrior, who turns 8 next week. On Friday, she and Luka will fly to DC as well; Luka can see the White House and the Air & Space Museum, and, oh yeah, his dad.

Some good days, some bad days. Yesterday I made it through most of a 7-hour faculty retreat, but couldn't quite manage the last hour. Went home and took a nap. Headaches hanging around, stormclouds on the horizon; not always active, but always possible.

Cracks

Countdown: 26 days to the NCI clinical trial.

Yesterday I spent 5 hours on arrangements. And barely got started.

• Logistics of the trip. How to handle child care while I'm away and after my immune system crashes, probably a week or two after treatment. When my partner will and won't be there. When, and how long, we're going to need help from my mother and others.
  
• Due diligence with the NCI nurse. Who pays for the trial? Any vested interests of the doctor in Genentech (maker of Rituxan)? What's the drug company's role? How long will the study continue? What happens if the trial leader dies or moves on? What happens if I leave the country for a year or more? Etc. etc.
• Getting the UM medical records system to release my records to the NCI
• And on and on and on.
  

Unbelievable how much time it takes.

Cracks between the systems. As I said in my last post, getting into this trial puts me at the intersection of three huge, complex organizations: the UM hospital, the National Cancer Institute, and the insurance company.
Tests and some treatment happens at the NCI; that's all fine, I'm in their system and I expect it will work OK.

No matter what, I'll get 5 days of cladribine infusions. The first 2 at the NCI, then I come home. The next 3, here at UM. The first infusion is scheduled for a Wednesday, which means the last one has to happen on a Sunday.

But the UM infusion center isn't open on Sunday. Does that matter? Could I do it Monday instead? Answer: yes, it matters for the clinical trial, because the trial needs the treatment conditions to be as close to identical as possible. Homework: communicate with Dr. B's nurse to see whether there's some way to get an infusion here on Sunday; if not, reschedule the treatments. Maybe stay at the NCI for all 5 infusions, but then we're talking 8 days instead of 5 at the NCI, which has a big effect on my family, since my partner wants to be near me for all 5 treatments.

Once I'm back here, there'll be more infusions no matter what. The NCI supplies the drugs, but UM is supposed to administer them. How do they get here? Who transports and delivers them? Most important for me: who pays for the infusion services, which might cost up to $1500-2000 a pop? If this isn't set up correctly it won't be covered by insurance and I'll be stuck with the bill.

I'll have many, many blood tests — some done here in our lab, some sending blood to Maryland like I did the other day. Who draws the blood? Who pays? How far off the map will the system let me go? How much irregularity and extra time will my doctor here tolerate?

This is at least a half-time job right now.

Holding pattern

Countdown: 31 days to the NCI clinical trial.

• Hemoglobin 10.8 (WHO normal 14.0-17.3)
• Absolute neutrophil count 1.0 (normal 1.4-7.5)
  
• White blood cell count 1.6 (normal 4-10)
• Red blood cell count 3.06 (normal 4.5-5.9)
  
• Platelet count 94 (normal 150-450)

Down and up and down again. They bounce around, says Dr. B. This week's test: a large-ish drop in hemoglobin and RBC, which accounts for the increased fatigue, headaches, and occasional lightheadedness. Having good days and bad days now. I'd say I feel OK about 85-90 percent of the time. Cutting back on work and preparing to wind down much more. But still going strong on most fronts.

Fortunately immune counts are still OK. ANC at 1.0 is considered above the threshold for treatment in the NCI clinical trial and no major risk for infection. Lymphocytes are down to 4.0 (normal 0.8-5.0) — low, but I've been that low before, and according to Dr. B there's no clinical consequence.

All my counts are still higher than when I was diagnosed in 2007. Then I went 26 days between diagnosis and starting chemo, so I don't see any problem making it to November 8. The docs seem OK with it too.

Nonetheless, trying to avoid infections at all costs. Lots of handwashing and Purell, not shaking hands so much, getting out of the room if there's coughing going on. It'll be great if I can make it to November 8 without getting sick.

As I start to navigate between the UM hospital and the National Cancer Institute, I am getting worried about falling into the crack between the two systems. UM works great on its own, I know from experience. Don't doubt the NCI does too. But these are two very big, very complicated systems with many moving parts. They're not designed to work with each other, and nobody in one system knows much about how the other one works.

In this trial, the NCI supplies the drugs but UM administers them to me. UM has to supply blood tests, and occasionally blood and bone marrow samples, which get Fedex-ed to Maryland. (Did you know you can Fedex blood samples at room temperature? Just stuff them into a cardboard tube, packed in tight so the tubes don't break. No idea why that doesn't ruin the samples.) Every transfer between the two has to work, and somebody — probably me — has to ensure they do. I dumped the blood samples into the Fedex drop box myself last week, wondering what would happen if they missed the pickup. But it worked just fine. Still, walking out of the hospital with a bag of blood felt truly strange.

Then there's the Third Man, the one I've been blissfully ignoring until now: my insurance company. I have no idea, yet, how that plays into this scene. From the company's point of view, a clinical trial is probably great; the trial bears almost all the costs, which in this case is going to save the company at least $100,000 at the discounted price it probably pays for Rituxan ($20K a pop at retail), certainly more than that if you throw in all the blood work and the test marathon I'll get at the NCI.

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.