Sunday, December 21, 2008

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.

Santa Leu

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

Wednesday, December 10, 2008

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.

Yes, Two Thumbs Up Indeed
(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.

What 120mph Wind Does to Your Face
(Keep your mouth closed stupid...)

Good God It's Pretty From Up Here
(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.

Tuesday, December 2, 2008


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.