A Merry Xmas Indeed!

We visited Stanford on December 16th for my 6 week checkup with Dr. Coutre. The cancer center was the busiest I've ever seen it. We waited for almost 2 hours past our appointment time before we could see the doctor.

This turned out to be serendipitous when a lady named Beth came over and introduced herself. She recognized my face from pictures I've posted here. She follows this blog and we've commented back and forth a couple of times on the LLS forums. It was a genuine pleasure meeting her. We talked for around 45 minutes about treatment, CML, dealing with day to day life and Dr. Coutre. Beth was diagnosed the same week I was and so far is doing very well on Gleevec. I wish her good news when her test results come back from this visit.

The visit itself was very brief. We talked about what tests were being run (CBC, FISH, metabolic panel and electrolyte panel this time) and why. The metabolic panel shows whether my liver and kidneys are working correctly, the electrolyte panel shows the electrolyte contents and CO2 levels in my blood, and the FISH test shows how many cells are leukemic. If the FISH test shows less than 35% leukemic cells, it's called a Major Cytogenetic Response. If it shows 0% leukemic cells, it's called a Complete Cytogenetic Response, i.e. remission.

The CBC and panel results are always ready in time for your visit with the doctor. Things look good in general (the charts have been updated). My RBC is ever so slightly low, and CO2 was slightly elevated. It's nothing to worry about according to the doctors though.

The FISH test takes a little longer to process so we had to wait until Friday for a call from Coutre's nurse. The news was good:

I've achieved a Complete Cytogenetic Response!

That's right kiddies, my Xmas present this year is remission! No detectable leukemic cells from the FISH test. We're very excited and very relieved at the news. We weren't expecting this until mid-2009 according to the average time lines for Gleevec response.

This post is late because I wanted to surprise my family with the news Christmas morning.

I'll be back at Stanford in March, 2009 for my next checkup. In addition, I'm planning on returning to work in mid-January. It'll be nice to start a normal routine again.

In other news, I'm not a fan of putting clothes on dogs, so my mother-in-law (tongue firmly in cheek) keeps sending us outfits for Leu. I broke down and took some pictures in the Santa costume.

Merry Christmas, Merry Xmas, Happy Hanukkah, Happy Kwanzaa, Happy Winter Solstice, Happy Holidays, Happy December!

Because I've Always Wanted To

I've always wanted to go sky diving just to be able to say that I did it. But I have an immense fear of heights that never let me get anywhere near this activity. Until last weekend... :-)

It's funny how a major illness will change your outlook. I actually smiled and gave a thumbs up when I reached the door of the airplane and tumbled out. I enjoyed the entire trip from 18,000ft back down to sea level.

That's right, I jumped out of a perfectly good airplane! And I loved it! I feel like I've conquered a lifelong fear.

(Check out the plane in the background of the photograph.)

My brother Todd and my intrepid wife Wendy (who I think only agreed to do this as a huge favor) joined me on December 6th, 2008 at Skydive Monterey Bay for a tandem jump from 18,000ft (the highest you can legally jump in California) to free fall for a full 90 seconds before gliding gracefully to the ground.

I splurged for an "in-flight" video and I'm glad I did. Here's the entire experience captured skillfully by Jamie from Skydive Monterey Bay.

I asked the guy strapped to my back if he could do some cool stuff on the way down like a head first dive or a somersault or something. I figured if I'm going to do this, I might as well do it right. He didn't seem to too keen on this idea but took pity on me about half way down and spun us around pretty fast.

The day wasn't without it's scary moments however. After our chute deployed and we were floating calmly around, "guy-strapped-to-my-back" points out toward the ocean where a parachute is floating listlessly away with nobody underneath it. He informs me that it's a "cut away". It apparently didn't open correctly and had to be cut away so that whoever was under it could deploy their backup shoot.

Guess whose parachute this was? Yes, you guessed correctly: it was Wendy. She made it safely to the ground though and now has a great story to tell about this experience. This would happen to her with our luck this year. "Guy-strapped-to-her-back" said he's jumped over 3000 times and this has only happened to him 3 times. Pretty low odds....

Here are some additional pictures. You can also see all the pictures on my flickr account.

(Keep your mouth closed stupid...)

(Such a beautiful view.)

There's a blogger named Kairol Rosenthal who previously beat cancer and writes prolifically about how cancer affects young adults like herself. Recently she wrote about becoming more cautious since her cancer. I think I've gone a little bit in the other direction, throwing caution to the wind and doing some things I've always wanted to but never had the guts to. Then again, I've always been a little "buttoned-down" so maybe I'm just moving more toward "normal". If nothing else I think my life is richer from this experience. Not only did I conquer a deep fear, but it was probably the single most exhilarating thing I've ever done.

Tubthumping

There's a song by Chumbawamba called "Tubthumping" that goes:

I get knocked down,
but I get up again.
You're never going to keep me down.

We sing the songs that remind us of the good times.
We sing the songs that remind us of the better times.

There's a girl named Dawn on the East Coast that has CML and is 6 days post stem cell transplant. She's developed a condition called veno-occlusive disease (VOD) as a side effect of her transplant. This morning, Dawn experienced respiratory failure due to fluid in and around her lungs and around her heart. As of 8pm tonight, she's on a ventilator and in stable condition.

She was diagnosed in March of this year, 2 months before I was. It's amazing what different courses this disease can take. I've met people who have died from it, people who started taking Gleevec a few years ago and lead normal lives now, people who've been cured by transplants, and I've met Dawn, whose complications keep knocking her down. But she keeps flashing her mega-watt smile and getting back up.

It's the holiday season. She should be battling traffic, shopping malls, family meals, and anxiety over the perfect Christmas present for her boyfriend. Instead she's battling fluid filled lungs, morphine for pain, hospital food, and VOD.

Please join me in singing a song to remind her of the better times until she's there again. All my love goes out to her and her family in these trying times.

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....

Gleevec!

(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.... :-)

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.

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.

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.)