May 31, 2024: jgwkia has moved to substack


JGWKIA (jg will kick its ass) has moved to substack. You can access (and subscribe to) it by clicking here.

The full URL to my substack is http://jgwkia.substack.com/. There will be no more new posts here, and eventually jgwkia.com will point there, not here. Bye bye Blogger!




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

Comments

  1. JG...happy to be the first to post. Sorry to hear that some wrinkles have come into the picture, but I know you'll do everything you can to ensure that you stay healthy as can be. Hopefully nothing will get in the way of your trip to Philly in a couple months, we all can't wait to see you and the fam!

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  2. Sending you strong ass-kicking vibes.

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  3. Hang in there, JG! Btw, great video!

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  4. Ok, now I understand better. Dude, that sucks. Makes me feel like I have nothing worth complaining about with my itty bitty chemo side effects.

    Being on an increasing does of immunosuppressents, are you also vulnerable to infections? I hesitate to say this, because I know that getting unsolicited advice from people who don't have the whole picture can get annoying, but is flying anywhere a good idea, given how airplanes are prime sources for spreading germs? Personally I've tentatively decided that I'm not getting on any airplanes during chemo.

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    1. Complain all you want. Chemo sucks. Travel risk is unclear. I'm certainly not going to India (sorry, gc) or anything like that, but Dublin/London is probably ok -- my team didn't have a problem with it.

      I'm going to San Diego in a couple weeks -- we'll see how I do. Floyd is kinda sick right now, and I'm feeling a bit under the weather, so who knows, maybe I'll bail on the Europe trip. Haven't booked it yet.

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  5. Loved watching the video! Sorry your in some turbulence right now bud. Stay strong.

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  6. And your will, is not your own...

    Sorry to hear about the immune suppression woes, I hope you find a way through soon.

    Cool video! Nice to see the name CCE lives on. Whoever came up with that name back at BEA? Was it NickD or GeorgeK?

    Cheers
    mbg

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    1. I think it was George K. Incidentally, it was GK who met with some high-level SFDC execs when Chris Fry was pitching CCE for SFDC a few years ago. He recommended me as someone who could help. Very cool.

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  7. Hey John,

    Our team may have thanked you already for embedding your Ongig video onto your cool blog, but I wanted to makes sure. So....thank you!

    And I was wondering if your "Andy My Friends They Come Around" title on your touching post (http://www.jgwkia.com/2011/12/and-my-friends-they-come-around.html) about you and pal Patrick was a reference to the song Black Peter. I like to know these things. :)

    Inspiring content either way!

    All the best,

    Rob Kelly
    CEO, Ongig

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