Tuesday, April 21, 2009

Cans On A Fence

I've been tracking down and eliminating potential causes for my ongoing fatigue. After my last two glucose readings came in low from tests at Stanford I saw my GP and he agreed to run a glucose tolerance test as well as check my AM and PM cortisol levels. Both checked out within normal ranges, which means I'm not hypoglycemic (the opposite of diabetic). At least I won't have to watch what I eat like a Hollywood starlet.

The tolerance test turned out to be located somewhere just south of "fun". I fasted for 12 hours then drank a bottle of nasty sugar water (who knew sugar water could taste nasty?). Then I proceeded to sit in the doctor's office for 5 hours getting my blood drawn every hour. Luckily my veins held up quite nicely and they didn't have to stick me anywhere other than my arms. It turns out I would make an excellent intravenous drug addict!

My sleep quality and schedule is another potential cause for the ongoing fatigue. Since I was diagnosed I haven't been sleeping regularly or well. It has gotten progressively worse and for the past couple of months I've been unable to fall asleep before 5 or 6 AM. Various drugs were of no help and my pathetic attempt to adjust my schedule fizzled out after day four of trying to get up an hour earlier everyday. I started on a Monday and by Thursday was running on a grand total of 7 hours of sleep. So I gave up.

I made an appointment with Dr. Angela Anagnos who specializes in sleep disorders. I completed a sleep study 2 weeks ago that had to be scheduled during the day in order for me to actually sleep during the study. I showed up at 9am and was ushered into a room with a bed (that's the actual room and bed where I slept) where dozens of wires were attached to my scalp, face, chest, arms and legs with what seemed like the kind of paste you used to eat in grade school. Two sensors were stuck up my nose (very similar to a nasal oxygen tube) and two bands were strapped around my chest. The "hook-up" took about an hour to complete after which I promptly passed out and slept till 4pm.

During the followup the next week I learned that I had some "pre-seizure" brain activity (though no actual seizures, which I'm guessing is normal since she didn't seem concerned about it), a wildly ranging heartbeat (anywhere from 30bpm to 190bpm), mild snoring, and mild to moderate sleep apnea. None of these seemed to concern her very much. One that did was the amount of deep sleep that I got. According to her, most people are in deep sleep about 20% of the time. I got .2% deep sleep (the period is not a typo, that's less than one percent).

So I'm scheduled to go back in this Friday from 9am to 4pm again for another study where I'll be hooked up to a CPAP machine to determine whether "fixing" the sleep apnea will allow me to get more "deep sleep".

On a side note, the followup was absolute fascinating. All the data collected from the sleep study is distilled into graphs and charts of all kinds. It was great fun to go over them with Dr. Anagnos and see my sleep habits distilled into the various diagrams and charts. Did I mention I love numbers?

If all of this sounds dull and boring, you're absolutely right. In fact, if you've made it this far into this post I applaud you for your diligence. No one gives a rat's ass about any of this detail except me.

I have a reason for posting this though and it has to do with yet another lesson I've learned from cancer: It's okay to try and take care of yourself. (If you watch Southpark at all, this is the point in show where one of the boys says "You know, I learned something today".) Before I was diagnosed I'll estimate that I saw a doctor about 10 times in my entire adult life for things other than a required physical or checkup. Before cancer I would never have even entertained the idea of requesting a glucose test or a sleep study. I would have thought I was just being a hypochondriac and that if a doctor didn't tell me to do it, it must not be necessary.

Now I'm chasing down symptoms and causes for fatigue and knocking them off one by one like cans on a fence. And I don't give a shit if someone thinks I'm a hypochondriac or that I'm a "difficult patient" or complainer (monikers people with chronic conditions are sometimes tagged with). If there is something out there that might help me to not feel so tired, I'm going to find it. If I have to go through 20 tests that show nothing before I find one that does, so be it.

It's okay to try and take care of myself.

Wednesday, April 1, 2009


Feel free to officially break out the champagne (or sparkling wine) to celebrate. I received a copy of my PCR results from the March 3 visit to Stanford and it says (and I quote) ">3 log reduction". And this time it says "CML" too. I checked with Dr. Coutre and he concurs that this means I've achieved a "major molecular response".

This means that there has been at least a 3 log reduction in the number of leukemic cells in my body but that they are still detectable. The next (and last level) of response would be a "complete molecular response" which means that no leukemic cells were detectable with a PCR test (you might also hear this called "PCRU" or "PCR Undetectable"). Obviously this has nothing to do with charity but I don't need an excuse to pass along good news... so there.

In other news Wendy and I have been trying to become more involved with the trainees for this season of Team In Training. We attended a pool tournament fund raiser where I took 3rd place! We had a great afternoon talking with Mark who put on the event. My personal thanks to Shoreline Billiards in Mountain View, CA for their generous donation of 5 tables. This Saturday we're attending the Team In Training "Honoree Picnic". This is an opportunity for the trainees to get to know the honorees and mingle. It should be fun.

If you're within range of the venerable KGO Talk Radio (my favorite talk radio station along with NPR) they are having their annual Leukemia and Lymphoma Cure-A-Thon April 3 and 4. All the money goes to benefit the Leukemia and Lymphoma Society. Consider listening in and maybe donating a little something.

Bring on Spring!