Search This Blog

Wednesday, May 2, 2012

Can't This Wait til I'm Old?


Blogging Tunes: Sports Radio 94 WIP via Radio.com iPhone app

Been meaning to blog for a few weeks now, but never seem to find the time/energy, so I’m trying something new – I'm blogging from my work lappie on the Ferry on the way to work.  I usually do email, but maybe this is the better use of time.  If can get the body of the post done on the water, over a few trips if necessary, and then add the pics later when I'm home, maybe I’ll be able to post more regularly.

So I saw Dr. Damon on Monday – first time in about a month.  While my physical problems continue to get worse – more on that later – he reminded me that, in the vast scheme of things, I’m doing extremely well.  My counts are excellent, and the outlook for my recovery, in terms of no leukemia, is still very good.  Also, even though I take 8 pills and a liquid dose of Tacrolimus every day – which seems like a lot to me – he informed me that I take a lot fewer meds than most BMT-recovery patients.  “You’re doing great, John.”

The main problem continues to be this chronic GVHD (graft vs host disease) which, for me, manifests itself in the form of muscle constriction and joint issues.  That is, it seems that my muscles, some more than others, are constricting so much that it’s reducing my range of motion in most of my body.  So for example, when I try to straighten my arm, my elbow, is about 30 degrees short of the 180 degrees it should be.  You can actually see this at the very end of the 20-second “Floyd crush” video as I approach the camera.


See how my elbows are bent when I walk?  Fortunately, the same isn’t true of my knees – that would certainly make it hard to walk – but it is similar in my fingers, shoulders, pretty much everything in my upper body.  Typing and piano playing isn’t painful now, so I guess that’s a plus.  My lower body is affected too.  Quads and calfs are tight, and I still suffer from neuropathy in my feet and toes. 

So what are we doing about these problems?  Well, my doctor is preaching patience.  This form of GVHD has no silver bullet.  You keep tweaking the meds, and you wait.  As mentioned previously, if nothing works, there's a more drastic procedure (involving lighting up my blood) which tends to have good results.  Before we try that, though, we’re going to stick it out with current recipe for May, and, if need be, there’s one more med he wants to try in June.  This could take years.

I’m also seeing my accurpressurist more, working on getting in the pool more, and doing some basic stretches as much as I can.  I used to use “jet mode” on my shower head to help with muscle massage, but recently, our water pressure has dropped so much, that the shower is borderline useless.  Plumber coming tomorrow. 

A couple other problems seem to be getting a little better.  I developed a nasty burn (we think from sun-exposure) on my lower lip after our trip to San Diego a couple weeks ago.  I loaded up on the SPF 50, but forgot the SPF lip balm.  I think that, and all the peanuts from the Phillies games did a number on my lower lip.  Unlike I did for Tripp – I texted him a pic of my lip – I’ll spare you the image.  I also got a bad blister on my left hand.  I was worried this was something worse, but the doc thinks I must have gotten some kind of chemical burn.  It's gotten much better in the last 24 hours.

So San Diego?  Yeah, we took our first family vacation since my transplant: an extended weekend to San Diego.  We saw Sea World, the Zoo, and went to a few Phillies@Padres games.  All the activities were really fun, but the trip crushed me.  Too much stuff, not enough rest.  It was a good litmus test for what I’m capable of, and it made me realize that I'm not even close to normal. One thing is clear: traveling to Europe this month – I was supposed to go to London and Dublin for work – is just not the right thing to do.  Trip canceled.

Here are a few pics of our trip to San Diego:

Floyd pulling his weight (Floyd: 38lbs | Suitcase 39 lbs)

Floyd climbing at the Sesame area of Sea World

Shamu's got one, borrow his

Left to right: Floyd, Elmo, Cookie Monster, Orion

Me and Heather at the Phillies game on Friday night

Heather and Mae at "The Beach" (PHI@SD) Sunday afternoon

Daddy and Floyd at "The Beach"

Orion taking after Daddy - Ice Cream in one hand, a pickle in the other

When we got back I was really tired, and last Saturday I need to rest most of the day.  That was rough on the family.  I think the idea of “don’t bother daddy, he’s not feeling well and needs to rest,” was really hard on Floyd.  He was just beside himself.  He couldn't verbalize it, but we feel like it stirred up all the “daddy’s sick” memories.  Suffice to say it was tough on Heather too.

I’m definitely feeling better now, but still not quite where I was a few months ago.  I haven’t biked to the Ferry in over two months, and I’m not feeling like I have the strength/energy to do it now.  It’s so hard to know when to push and when not to.  If I feel up to it, I’m going to have to get some sun-gear.  I’ve always biked in shorts, so when I do, it will certainly be an adjustment.

Here are a couple other sports-related pics from April:

The boys gettin Flyered up for playoffs (thanks for the jerseys, Uncle Matt)
The original crew, pre-game before Phils@Giants (miss ya, Matty Young)
And lastly, a call to action: anyone in the San Francisco area interested in getting involved in this year’s Light The Night walk?  If so, please let me know.  You can reach me at: jaygee [at} gmail (dot] com.

Kicking (with limited range of motion),

-jg

4 comments:

  1. Sorry to hear about the continuing GVHD issues. Glad at least that you're able to still play piano and type.

    Re: lots of pills

    Lorien got sick of me forgetting whether I had taken some particular pill and expecting how on earth she would know, so I finally went out and bought a couple of those plastic sorting boxes for counting out various pills for various times of the day for each day of the week. I had kind of resisted doing it for a while, because it kind of seemed like giving in to something that I didn't want to admit, but now I'm really glad I did.

    ReplyDelete
  2. Yup. Gotta have those pill boxes. Floyd helps me set 'em up every week.

    ReplyDelete
  3. Sorry dude that the health issues continue at a chronic albeit not life threatening they are life altering. It's tough to readjust our expectations. While I've nothing at all in comparison, my knees have both tweaked out to the point I can't do super strong hiking any more and I have returned to riding a road bike for exercise. It's been a tough mental shift for me, though as noted it pales in comparison to what you've been through. Best mbg

    ReplyDelete
  4. Ok, your blog just erased my post when I tried to preview... several times, also when I tried to publish. Maybe a Chrome issue, trying from Firefox.

    The gist is I love ya, I miss ya, I saw your boys beat the Celts in game 4, but I'll be watching to see if the green can take it home Wed. And The Beach is a brilliant idea - don't expect anything like it at Fenway soon, but we're taking Sophie to her first game in a few weeks (Senato... uh, Nationals, couldn't make it Phillies, sadly).

    The ass will never get the better of you, my friend.

    Nabib

    ReplyDelete