Sunday, November 16, 2008

Best. Week. Ever.

Hopefully you're familiar enough with Comic Book Guy from "The Simpsons" to be able to say the title in his voice.

This has been a great week. No nausea, more energy than usual and a November that feels like September. I actually did some yard work today! (Much to Wendy's delight....) I can't hold a glass of water steady right now due to shaky muscles, but the lawns are mowed and the hedges are trimmed!

I received a call from Carolyn at OHSU a couple of days ago with the results of my Gleevec level test. I'm on the low side of the "normal range". She said they like to see the level at 1000 (not sure about the units) and mine was at 590. Below 500 is apparently bad ("non-theuraputic" I think she said). This means my dosage cannot be lowered to reduce side effects. Luckily, this week they are lower than I think they've ever been.

And now from the "random-moments-of-the-universe" department:

I still have trouble sleeping at nights and end up watching a fair amount of T.V. Last night I'm watching a Law & Order episode from 2002 called "Undercovered". Detectives Briscoe and Green are investigating the murder of an insurance adjuster. They eventually arrest a cable installer who's van was present at the crime scene and who was in possession of a hammer that was determined to be the murder weapon. As A.D.A.'s McCoy and Southerlyn try to determine a motive they discover that the man's daughter had a disease.

Guess what disease.

No really. Guess. I'll wait....

It's CML! The father murdered the insurance adjuster because they had denied treatment with a new, but expensive wonder drug and approved a bone marrow transplant instead. Since the family was Hispanic, the odds of the little girl finding a matching donor were near zero. So the father bashes the adjusters head in with a hammer. Two guesses what the wonder drug was....


(Did you get it in one guess?)

How's that for random coincidence? It's three o'clock in the morning and I'm on the couch freaking out, waking up Wendy because I just can't believe what I'm watching.

It made me think though:
  1. Did Druker come to work the next morning back in 2002 and get heckled in the hallways?
  2. Did insurance companies really deny treatment with Gleevec in the beginning due to the exorbitant cost?
  3. Did someone with CML awaiting a transplant discover Gleevec through this episode in 2002 and change the course of their treatment?
  4. Will Wendy forgive me for waking her at 3am to share something that could have easily waited till 10am? (Yes, for those of you keeping score, she did.)
This the first time I can remember personally "part of" something that's been dramatized on T.V. And it had to be cancer. What the fuck? Why not "Girls Gone Wild"? Or a documentary on the lives of lottery winners?

Ah well, one can hope.... :-)

Monday, November 3, 2008

Something Goes Well

...and it's about damned time.

Wendy and I have just returned from beautiful Portland, Oregon and our visit with Dr. Druker. It went well. Very well. The leaves are turning in Oregon right now and it's downright gorgeous. Smatterings of reds, golds, yellows and oranges throughout the city and hills make this a beautiful time of year.

Dr. Druker works at OHSU and was responsible for some of the original research that brought about Gleevec, the drug that is currently keeping my leukemia in check. The main campus is situated amongst the trees atop a hill in southwest Portland. It has a grand view of the river and a good portion of downtown. If it had been clear, I'm pretty sure we could have seen all the way out to Mt. Hood. Alas, it was cloudy for our entire stay.

Portland From OHSU

Wendy and I met with Dr. Druker's nurse, Carolyn for about 30 minutes. We went over my medical history, my current treatment status and the side effects I was experiencing. She was a pleasure to talk with and was very thorough. After this we were joined by my parents and Dr. Druker talked with us for about 2 hours. It was a very enlightening and uplifting experience.

Multnomah Pavillion at OHSU

Rather than rehash the entire conversation, here are some high points:
  1. His explanation of the difference and usefulness of the three tests for CML (CBC, FISH, and PCR) was the best, most clear presentation I have ever heard or seen. I feel like I actually understand the difference and what a doctor is looking for with each. I wish that I could have recorded this so that I could post it online for others.
  2. My current treatment regimen and response to Gleevec is what he would expect. He implied that I was being well taken care of by Dr. Coutre at Stanford.
  3. My fatigue and nausea are not where he would expect them to be for someone who has been on Gleevec for 4 months. He says they should have lessened by now. I returned the next day for a blood draw so that a "level test" could be done to see how much Gleevec was in my bloodstream 24 hours after having taken my pill. The results should be back within a couple of weeks.
  4. He recommended another bone marrow biopsy in December as a matter of course. It seems that there is some differentiation between doctors on this point. Some are satisfied with the FISH test result at 6 months, some like to be more cautious (or thorough, or paranoid depending on your viewpoint) and stab your bones with a giant needle. We'll see what transpires in December.
Dr. Druker is a genuine pleasure to speak with. We never felt rushed and he was downright brilliant at distilling complex topics into something that my whole family could understand (I really wish I could pass along his "tests" discussion, it was awesome). He and Carolyn had several suggestions that we're going to try regarding my side affects. I'll be going back to the compazine for nausea, trying daily Citrical to alleviate muscle cramps and aches (despite those utterly horrid Paul "I Have No Integrity Because I'll Read Whatever You Put In Front Of Me" Harvey ads for it), and TUMS for immediate "emergency" cramp relief (lately my feet twist up into balls and won't let go).

Oh, and did I mention that we get to make a baby?

Here's a video* I found that I think accurately depicts how I feel about that:

Can you sense my joy?

According to Dr. Druker, there's no real reason we can't have a child while I'm on Gleevec. There's a theoretical chance that it could cause a birth defect, but no real evidence exists that demonstrates that. He has several patients that have fathered children, all of them healthy. I can't express how ecstatic this makes me feel.

One request: Please do not ask myself or Wendy how things are going on this front. When we have good news, we'll spread it loudly, far and wide. Till then, no inquiries, please. Assume we're still "busy".

For the remainder of the trip we dabbled with a few sites around Portland. We drove along the Historic Columbia River Highway and saw Wahkeena and Multnomah Falls. On Saturday we went wine tasting in the Willamette Valley before seeing my parents off at the airport. Wendy and I also drove up to Mt. Hood all the way to Timberline Lodge. We would love to go back in the winter to stay and do some snowboarding here.

Did I mention that we get to have a baby? :-)

(* I made the clip from a longer video by a guy named Tony. Hopefully he doesn't mind that I shortened it. Here's the entire video if you're interested.)