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Saturday, November 27, 2010

Two amazing things to get me through an otherwise kinda so-so day

Blogging tunes: Grateful Dead - So Many Roads Discs 2 and 3.

The setting: it's very cold, grey and cloudy outside, but to the West, the sun is peeking out below the clouds and lighting up the Upper Haight and Ashbury Heights.  Here's a pic.  Click it for a higher-res version.


OK, here we go... last night was one of the worst sleep nights so far.  I probably woke up 10 to 12 times from 9pm to 7:30am. Seriously.  Think about that for a second.  How can you possibly get any real rest if you're waking up that frequently.  Twice, I had soaked through my clothes (night sweats: one from fever, one just 'cause.)  I don't know what to make of the other times.  Sometimes I had to pee, but other times, I'd wake up for no apparent reason, check the time and say to myself, "WTF?  I just went to bed 30 minutes ago."   I think tonight I might ask them for a sleeping aid of some kind. 

Anyway, After my second night sweats episode, it was a little after 6:00a.  I'd had enough and wanted amazing thing number #1: a hot shower.

I can't describe for you the magnitude of just how wonderful showers feel.  I've been trying to get one every other day, or at absolute least, every third day.  I know my room probably feels warm to folks who visit, but I'm always cold these days.  Even colder by the time they wrap my PICC line and I get undressed for the shower.  I guess I understand why they wrap it the old fashioned way (a bag with tape on both sides), but hopefully, when they discharge me (assuming they leave the PICC line in) they'll hook me up with one of these reusable PICC line protectors.

Fortunately, the shower gets nice and hot, there's good water pressure, and there's a shower chair (looks like this) so I can just kinda sit there and bask in the warm water.  Without my long hair to wash... oh, I probably didn't even post about that yet, did I?  Yeah, I think I mentioned that my hair was falling out, but didn't show you Heather's handy work.  Well, here you go.

Before:



After:


Great job, Heather!

So anyway, back to the shower.  Without my long hair to wash, it's really about just letting the hot water wash over and energize me.  Oh I wash of course -- they give me lots of washcloths, and I have Floyd's natural bodywash -- but I take my sweet old time.  I think I was in there for 25 minutes this morning.  Honestly, I didn't want to get out.  If I could sit under the warm water for a couple hours a day, I would.

After the shower, I felt pretty good, but was still tired so I slept til about 7:45a at which point I forced myself to get up and do a couple of laps (walking around the hospital floor).  This still takes quite a bit out of me, but it helps me gauge how much energy I'm going to have for the day (errr, for the morning at least.)

Judging my energy level accurately was going to be key today because Heather was planning amazing thing #2, which is about 100x better than amazing thing #1: she was going to bring the kids to visit!  Now, I hadn't seen Floyd or Orion for 2 weeks.  For those of you who have young kids, I don't have to say anymore than that.  For those of you without kids, take my word for it: being separated from your family for that long is one of the worst things in the world.  I have a new respect for our soldiers who leave their families and go off fight -- this has nothing to do with my stance on war or anything like that, it's just about the people and what they sacrifice on a personal level.

So understand, when Heather comes to visit on her own, or others come to visit, they come to my room.  If I'm feeling crappy, that's fine, I just lie in bed, but this is different.  The kids don't come up here -- they're not even allowed on this floor, so I have to get disconnected from my IV, put on some "normal daddy looking clothes," get my energy up, and go down to the lobby and be superman for my boys.  In fact, today, I even wore the Superman shirt that Heather's parents got me.

The visit was short, but it was amazing.  I even brought Floyd his own mask so he could be like daddy.  He didn't really need to wear one, but it was pretty cute.  He gave me a great big hug which just made me cry like a baby.  I just missed him so much.  Here are some pics:


Even Orion is trying to get in on the action.  Sorry little guy, I had to give your big brother the biggest squeezy hug ever.


Amazing that he actually looked at the camera for this one.  Here are two more that I took of Floyd just playing around:




The whole visit probably lasted 20 minutes, which was plenty of time to tire me out.  He wanted to climb on me, knock me over, etc.  Rather than saying no, I just pushed my limits, and then called it quits when I had to.  After the visit, I came upstairs, turned on the Flyers game (via justin.tv) and promptly fell asleep for about 90 minutes.

To my incredible wife: thank you so much for bringing them by.  Let's shoot for Monday after acrosports for the next visit.

OK, quick update on my health.  Got a fever again last night.  Not horrible, 37.9, but a fever nonetheless.  I haven't spoken with my primary oncologist in days, but one or two doctors that are part of his crew come by every day.  My platelets were low, so I got a platelet transfusion today.  Other than that, all the important counts seem to be moving in right direction -- which is great.  I think the initial hope was that I'd be a littttttle further along than I am now.  Last week, we had talked about a potential discharge date of Monday (11/29) or Tuesday (11/30).  This is looking less and less probable by the day.  Not a huge deal, but I do have an appointment scheduled for 12/1 at UCSF.  That's now in jeopardy.

Also, starting last night, I've started to get some mild headaches.  Nothing too severe, but enough that I wanted to tell the docs about it.  It's possible that it's related to some of the sinus stuff I've got going on, but I dunno.  They give me Tylenol which helps.  I wonder if they have something to do with my waking up in the middle of the night.

OK, before i sign off, I'll post a (blurry, sorry) pic of something that will make my dad happy.  Yesterday, while I was doing some stuff on the computer, I was listening to some Beethoven Piano works:


Big thanks to DAC for hooking me up with his old iPod loaded with classical music.

I will kick its ass,

-jg

P.S. GO EAGLES!

16 comments:

  1. I'm so, so happy you got to see your boys, and that you were able to rally for it! And glad that a hot shower provides some relief. "I just got out of the shower, I've got to wee-wee!" The Beethoven piano is great, I've been listening to it too.

    Thanks for the update on the latest ass-kicking.

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  2. Ditto to what Brown said..its awesome that you got to see the little guys. Kick its ass!

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  3. Ditto to what Brown and Ranga said... Go Jay Gee! Go Eagles!

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  4. Hey John,

    That picture of you hugging Floyd while sitting on the floor brought tears to my eyes. Not because of the situation (well, maybe a little), but because the love displayed in that picture was overwhelming. You truly impress me with your strength throughout this. We truly believe that you will overcome this. We can see it in your writing. We can see it in your eyes (at least what we see from the pictures). Keep the blog entries coming. We're checking every single day. Greg

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  5. Hey buddy, just read your post. So glad to see your boy in your arms. I can only imagine how hard that part of this whole experience must be for you. Superman, indeed.

    Keep kicking its ass.

    Love to you, H, F, and O.

    ejsphilly

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  6. Hi John, fantastic to see you with your son. My oldest taught at acrosports - we can swap stories soon. Your strength and courage continue to inspire us all. I KNOW you will kick it's ass!! Much love, Bud.

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  7. Man, sounds rough dude, but you will kick it's ass. Thanks for the pics of the boys. That had to be a great visit. Here's hoping for great progress. Cheers mate.

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  8. JG! you looks like a handsome and tough fighter!!
    I still waiting the news end of kick it ass!!, Castor Kim

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  9. Hey JG, so awesome that you got to spend some time with your kids! You are kicking ass, every day. Take care, Carol.

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  10. Hey BoM and Happy Monday! I hope you are feeling better this morning despite the Eagles loss. The pix of the kids and the blog itself brought tears to my eyes so thank you for the emotional roller coaster today. I wish I could beat this AML shit out of you but for now, I will do what mom says and keep sending positive energy your way. Looking forward to seeing you H, F, and O and the new house in a few weeks. Lauren is very excited. dg

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  11. floyd looks so cute in those pics!!! Hope to be able to come up and watch the family feud this week! stay strong my brother.

    KATDOG

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  12. SO happy you got to see your boys! how awesome that must have felt -- total heart to heart transfusion of unconditional kid love. sweet. i'll bet it did at least as much good as those platelets.

    and the new 'do looks great -- just like the ol' jg from back in the day. who knows -- maybe your immune system will follow suit and kick back up to 1996 levels soon?

    keep kickin' it's ass!

    love,
    amanda

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  13. nothing like your kids giving you inspiration and motivation! although i'm guessing you have plenty of that yourself. Man, showering's different once you loose your mane huh?!

    - Tyler

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  14. Hi John,

    8 Landmark is a lot quieter without you - not a good thing! My Dad is currently going through chemo for lymphoma and is suffering through all the sweats and chills etc. It helped me reading your recent blog about the symptoms.

    I told him about your tagline and his reply was "Well, it's kicking my ass today, but I'll kick its arse tomorrow". Keep kickin'

    -Mark

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  15. Great post, man! Glad you got to see the kids - sooo cute! :) Ya - a hot shower is the way to go when you can't sleep. Best stuff. 

    Kir its prace!!

    Jxn

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  16. Amazing Thing #3: JG

    Love you.

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