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.

Charity

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!

Boo Yah!

My doctor left me a message today. He didn't leave exact numbers, but said my PCR test results came back with a greater than 3 log reduction and that leukemic cells were "barely detectable".

Can I get a "hell yeah!"?

I'm reserving a full on celebration until I can get a copy of the results and see for myself, but this is EXCELLENT news.

I went out and bought a bottle of wine to share with Wendy. We'll be toasting to our good fortune tonight!

Public Speaking

I had the privilege of sharing my cancer story with the South Bay Team In Training group tonight at Los Gatos High School. I am an "honoree" this season. Honorees help connect the Team In Training participants to the cause that they are supporting. There are a handful of us that work with the South Bay group for the spring season.

Tonight after they finished running we gathered in front of the school and I spent about 5 minutes explaining how they had helped change the way that my cancer is treated. Before Gleevec I would have had a 4-5 year life expectancy and gone through chemo and radiation, along with a bone marrow transplant. With Gleevec I take a pill once a day. Though there are side effects that are bothersome, they are nothing in comparison to what my life would be like without it.

I'm not a terribly good speaker and I was actually a little nervous so I hope that my thank you to them came across as sincere and they have some small insight into how Team In Training has directly affected my life.

I really enjoy hanging out with the participants and leaders of Team In Training. Everyone is so enthusiastic and supportive. I can't wait till this fall when I attempt to actually run with them!

Ominous Violins

You know how in movies and television a subtle, yet ominous violin foreshadows some critical turn in the plot? For instance, two girls are talking jovially on the steps of their college dorm about classes and homework when the conversation turns to the party last Friday night. In the background a soft, low violin begins to play a solitary, wavering note as the girl on the left explains that she had sex at that party and that she's pregnant now.

Violins played today during my quarterly visit to Stanford. Our chat with the med student that precedes the visit with the actual doctor went very well. He gathered information about the medications I'm taking, the current side effects and how I'm managing them.

Then my regular doctor comes in and looks a little rushed (it was probably 5pm by this time, our original appointment was at 3pm). We ask a couple of questions about where exactly I am in treatment, how things are going, etc. We get a little hung up on whether I'm considered to have had a complete cytogenetic response as I reported over Christmas.

(Violins begin playing....)

He says you really need a BMB to determine if you've achieved a complete cytogenetic response. We had always been under the impression that a clean FISH test was the same thing. Then (and here's the kicker) it doesn't really matter because the FISH test from December was botched. The numbers are meaningless.

Really??

Somewhere in the "chain of evidence" that lab orders and samples go through when they leave my arm, get processed at the lab and come back, the test was changed from CML markers to CLL markers. So it was a wasted test, though you'll be happy to know that I tested negative for CLL. (Did the sarcasm come through in that last statement? Good.) The doctor didn't figure this out till he looked at the result today during our visit. When he originally saw them back in December, he didn't get past the part of the report where it said "Negative".

At this point Wendy and I are a little dazed; stuck somewhere between magnanimity, malevolence, and dumbfounderment. People make mistakes, they're human. But this was really two mistakes: the test was botched and the fact that it was botched wasn't caught. How could something like this have happened?

The bottom line is that I haven't had anything but peripheral blood tests (CBC) since July of 2008. So we have absolutely no idea what kind of progress I've made at the cytogenetic (FISH) or molecular (PCR) level over the past 8 months. I might be in "remission", I might not. We don't know.

Remember the violin? It's still playing actually. We're not quite through the plot turns here.

My first PCR test was in June of 2008, it showed 5.45% leukemic cells. The second test was done in July and it reported .45. 5.45 => .45 is a one log reduction. As the doctor was explaining what "good" data we had and what we expect to see from today's PCR test he mentioned that it would be good to get from my current .45 log reduction to a 2 log reduction.

Wait, what?

It turns out that we had been misinterpreting the results from my past PCR tests. The first test reports the percent of leukemic cells, that would be 5.45%. All tests after that report the log reduction, NOT the percentage of leukemic cells. So the .45 on the test from July means that I've achieved a .45 log reduction, not that I have .45% leukemic cells.

So this morning I was here:

• Clean peripheral blood.
• 2 log reduction.
• Negative FISH test (complete cytogenetic response).
• Essentially in remission.
  
• Hoping for today's PCR test to show that all important last log reduction.
• Happy and skippy.
  

After our appointment I was here:

• Clean peripheral blood.
• .45 log reduction.
• Most recent data from 8 months ago.
• Wondering if anyone got the license plate of the truck that just drove over me.
  

So now I have no idea where I'm at. We have to wait for the PCR results to come back (hopefully next week or the week after).

The bottom line is that we didn't get any bad news. We just had all the good news we'd been celebrating for the last few months completely invalidated. I feel like we're back to square 1 in a way. I had felt like we were solidly on our way to remission and a return to normal. Maybe we still are, but now I have no fucking clue again. It'll be a long 2 weeks waiting for those test results.