Back In Action

I'm back at work as of yesterday. My company has very generously held my position while I was out. I'm lucky to work for such good folks. This should be a good change, I definitely need some structure in my life. A regular routine will do me good. I'm also hoping that some activity and socialization will help reduce the fatigue. Luckily my job has no set hours so I don't get too many frowns when I walk in at 11am. By next week I hope to have adjusted and be in at a regular time.

On a touchy feely note, the hardest part about going back to work has been leaving Cancer Dog at home by himself all day. After 5 months of non-stop, daily contact, I feel a little guilty leaving him alone and honestly, I miss him a little bit. I never thought I'd get so attached to an animal.

As things begin to return to normal for me I'm constantly reminded of how easily they can go awry. Sadly, Dawn passed away last week due to complications from her bone marrow transplant. She fought quite a battle and my heart goes out to Mike and her family.

I've also been talking with a young woman from Washington for a few months who was diagnosed with CML in the fall of 2008. She was doing well on Gleevec until they found leukemia cells in her Central Nervous System a couple of weeks ago. Gleevec doesn't work when the cancer invades the CNS. Consequently, she has been switched to Sprycel and will go through 3 rounds of radiation over the next month to kill the rogue cells. I'd never heard of CML invading the Central Nervous System. Apparently, that's why the doctor always asks me if I'm getting more headaches than usual.

These kinds of things remind me not to get complacent about my treatment and that it's important to continue supporting the causes that make that treatment possible.

New Years Resolutions

If you haven' t made a new years resolution yet, or if you have but want to go for the gold, please consider making or adding the following to your resolution(s).

1. Join the National Marrow Donor Registry. There are people all over the country who need a transplant who will die this year because they can' t find a suitable bone marrow/stem cell match. Joining only takes a few minutes of your time and a few dollars. If you're cheap (like me) you can find a local bone marrow drive near you where the cost will be covered. (Light the Night is one such event.) If you can't find an event near you contact the Leukemia and Lymphoma Society and they should be able to find a way to help you. Wendy joined at a Light the Night walk this past summer.
   
   
   
   
   You're under no obligation to actually donate even if you're registered. If, at some point, you are matched and do choose to donate however, you will literally have saved someone's life. Please, please, please register.
   
2. Donate blood, often or even just once. This helps a lot of hospitalized individuals, not just those with Leukemia or other types of cancer. People undergoing radiation or chemotherapy treatments are often in need of blood. Recently, Dawn's hospital almost ran out of her blood type and had to ration her transfusions. Donating blood costs you nothing and you usually get a cookie! You can contact the Red Cross or most any local hospital to find out how to donate.

These are really easy things to do that will directly impact someone else's life.

Happy New Year to you all.

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.