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Friday, April 6, 2012

The Lights Are On, But You're Not Home

Blogging tunes: soma.fm Drone Zone (very quietly -- it's early)

Another night were I was so thoroughly exhausted, I honestly thought I was going konk-out reading stories to Floyd at 8:15p.  I managed to actually put my own book down around 10p and drift off rather quickly.  Only to wake up suddenly and 3:00a -- and I've been up ever since.  It's about 4:40a now.  I tried resting, breathing, clearing my head, all that shit -- nothing. Just up: body tired and mind going a mile a minute. Seems like the only time I get to blog.

Busy week with UCSF visits.  I had physical therapy on Monday and saw Dr. Damon and the nurse practitioner yesterday.  The situation isn't great. I mean, the most important thing is still good: no leukemia; but the chronic GVHD (graft vs. host disease) is getting worse.  The increase to 0.4mg tacrolimus had no effect, so they are starting me on a new drug: mycophenalate -- another immunosurpressive -- to try to get this thing under control.

Essentially, what's happening is that over the last few months, I've been having joint and muscle soreness and restricted range-of-motion throughout my body.  It's like major arthritis I guess. It's worse in my upper body, specifically my fingers, hands, elbows, and arms.  I have such restricted mobility in my wrists that if I place my hand flat on a desk, I can only bend my forearm about 40 degrees (everyone reading this can bend 90.)  If I try to do more, it's extremely painful in the underside of my forearm. This means I can't possibly do a push-up or plank pose. Fortunately, it hasn't affected my ability to type, use a mouse, play piano or bike.

The scary part is that it could get worse -- a lot worse -- and we don't want that.  So we need to figure out to fix it.  Hopefully, this mycophenalate will do it.  If it doesn't, we may need to do photopheresis, which would involve my going to UCSF four hours a day, once a week, for 3 months so they can filter my blood, light it up, and pump it back into me. Considering I'm planning to travel to San Diego, Dublin/London, and Philly/Atlantic City over the next three months, that would be a bit of a downer.

To add insult to injury, I got 5 shots yesterday -- my 9 month vaccinations.  My upper arms feel like someone just punched me 5 times hard.  Ugh.  I was hoping to swim this morning -- recommended by PT and something I've been wanting to do anyway -- but not with this arm pain.  Alas I will put it off one more week.

All this said, things are actually going pretty well. :)  I'm really hitting a stride at work.  We grew our EMEA team from two to five people over the last month!  Amazing candidates are literally falling out of the sky.  We made this video about my group that seems to be helping with recruiting.




This video can also be found on the Salesforce Technology Careers site.  I don't look half bad for a cancer patient, eh?  We're hiring in San Francisco, Dublin, and Tokyo.  If you're interested, please get in touch. :)

The family is doing well. Orion is really getting the hang of stuff. The usual stuff: more words every day; curious; excited; etc. For some reason, we can't resist dressing him in over-sized clothes. Here he is in one of my T-shirts and Floyd's robe:

O-bi wan?
Floyd's latest breakthrough is being able to swing all by himself.  No more, "Daddy, can you push me?"  Now it's, "Daddy, look how high I can go!"

Knees back, legs out, knees back, legs out...
He can also hold his own against me in this "match game" we play.  My chemo-brain + his smart = level playing field.  His memory is amazing.  Very cool.

I also took at trip to Florida a few weeks ago to sit on a panel moderated by Sam Donaldson entitled: Cancer and Corporate America: Business as Usual?  The NCCN saw the Fortune article and invited me to participate.  I got to stay in a schwanky hotel on the beach in Hollywood, FL, hang out with Sam Donaldson, and tell my story to over 1200 oncologists and care providers.  Here are some pics:

Me and SammyD at the reception dinner

The Panel

View from the balcony of my room (26th floor)

Same view at night

One final note: as mentioned in a recent Facebook post, March 30th was the 1yr anniversary of my stem-cell (bone) marrow transplant.  Hooray, I'm one. I still haven't put all the weight back on that I lost, but if you look at that picture of Sam and me, compared to one from a year ago, I've come quite a long way:

Me: April 15, 2011

OK, it's 6:00a.  Like clockwork, I just heard Floyd come out of his room.  Right about now, he realizes that I'm not in my bed -- he crawls into bed with us from about 6:00 to 6:20 every morning -- so I'm going to go up there before he comes down to the garoffice.

Kick kick kick,

-jg