I think it is Day +65

The rash from the GvHD is really going wild.   It covers my face and head, shoulders and back.  All of those places are red.  At least it doesn’t itch.  And it looks like a sunburn, so its not the end of the world.  We are using the steroid crème 3 times a day and the rash doesn’t appear to be getting better.   Doc is set on his course to get me off Prednisone.  Am I gonna one giant spot of rash?   We cut the Prednisone down to 30mg on Monday, I know I can’t stay on it forever but I would like to stay on it until this rash crisis is over.  I see Dr. Alkhateeb on Monday (somehow we got a morning appointment, woot), I wonder what he is going to say about the rash.   We messaged him and his response (thru a nurse) was “We’ll see about this next week.”  Some doctors.


I opened up a floodgate of new “friends” on Facebook.  Unfortunately, most of these new “friends” are selling porn.  So, I have to go thru the 300 or so people individually and weed out the porn ones.   A few have turned into gems.  Posting normal posts.  Chatting normal chats.   But the majority want me to go to their website and buy a membership.  Ho hum, porn is a younger man’s game.   Or at least one who didn’t just have a stem cell transplant and is sick.  I wouldn’t pay for it anyway, too much free porn is out there.


Teresa had a rough night last night, finally getting to sleep around 2.   I had a rough night last night, finally getting to sleep at midnight, 2, and 4am.  I finally just got up around 5:30am and said screw it, I am up.  This cough is gonna kill me if something isn’t done about it.  It’s gonna make me crazy from lack of sleep.  Make me go manic.  Teresa even noticed I didn’t sleep well last night, even with super CPAP (which has already started leaking, grrrr).


Cupcake shopping plan has probably been put on hold today.  Teresa needs her sleep.   We got a while  before my birthday, so its all good.  I just want enough cupcakes on my birthday for her and I to get sick off of.  No, seriously, I am thinking 6.  Don’t have to eat them all at once either.  Daubrie’s Bakery is the highest rated bakery in Rochester and it is not far from here, so we can just buzz over one day for a tasting (cupcake before my birthday).


Teresa asked me what I want for my birthday.  I don’t have an answer for that.  What do you get the man who has everything he wants/needs?  It’s a quandary I face.  I need to tell her I want something, but I really want for nothing much.  I could point her to my Amazon wish list, but that is  stuff I don’t expect her to buy me.  Besides we don’t have room in the car for anything of any size when we finally do get out of here at 100ish days.


It’s not even 8am and I have already had breakfast….  Beefaroni.   Yeah, barf all you want, I like the stuff.  And I went to the cupboard and there right in front of my face was 2 cans of Beefaroni.  The top can beckoned to me.  So I had to have it for breakfast.  I would have saved it for lunch, but I believe we are having Toppers pizza for lunch (if Teresa wakes up).  Besides I have another can that will be breakfast another day probably.


I’m so not used to waking up really early.  So much can be done and I just sit here wasting time.  I wish I didn’t have chemobrain, I would be writing my book.  But I can’t concentrate enough to put words to screen.  Yeah, if you notice my blog, it’s a bunch of snippets put together, not a cohesive thought process.


We (Teresa and I) realized we miss Dr. Wehbe.  Miss seeing him and his bow ties.   Dr. Wehbe is a great guy.  If you have need of an oncologist in the Des Moines area, I can’t recommend him enough.  He is going to be the one who is in charge of administering the “bump” chemo.  Yay rah.  Dr. Alkhateeb has said that my local oncologist can administer it.  So, Dr. Wehbe will be receiving a call soon I would expect.


Chemobrain has kept me from playing any of my more challenging games.   And even has me befuddled by Civ 4 Warlords.  Can’t seem to do anything right.  I thought about turning off barbarians, but that changes a whole dynamic of the game.  So I keep restarting Civ 4 Warlords in hope of finally getting a grip on my chemobrain and letting me play it out.  I play with continents, and I usually quit when I get my ship over to the other continent.  Yeah, not too far in.  I’m already playing on the easiest setting, so this should be a breeze, but NOOOOOOOOOOOOOOO, I am having problems.  Such is the life of a chemobrained man.


I already mentioned this, Monday I see a pulmonologist for a consultation.  Here’s hoping he has some idea why I keep coughing up a lung, especially at night.  I would like to sleep again.  Dr. Alkhateeb mentioned inhaled steroids.  I am all for that, if they will help.  At this point, 3 weeks in, the Rhinovirus should be totally gone.  And they did another nose swab and found nothing new.  So, I should have stopped coughing a while ago, but to hear me cough when I lay down, you’d swear I was freshly sick.  And it’s not just a cough, there is a wheeze to go with it.   But my lungs appear clear.  Go figure.


Would be amiss if I didn’t plug the empty spots in my upcoming D&D game.   Have 2 spots open for players.   I don’t care if you have never played before.  If you are interested, let me know.  We do not have a set day or time yet, but we aren’t starting til September, so there is plenty of time to figure that out.


Hey, just have to throw in here that I love my wife.  She is taking great care of me.  I would totally be screwed if she wasn’t keeping track of my meds.  It takes her about 45 minutes each night to get them ready for the next day.  She picks up all the prescriptions.  And attends all the doctors appointments with me.  She does it all for me.  I would be lost without her.


Hmmm, I want a cupcake.  Maybe Teresa will wake up on time.  Oh wait, she has to pick up a Wal-Mart order today, so she will be awake for it.  We can go to the bakery after we go to Wal-Mart.  Yeah, I will get a cupcake today.


Here is trailer 2 for Bohemian Rhapsody


Author: Jeff Campbell

I am 49 year old guy, who beat blood cancer but is getting his butt kicked by bone marrow cancer. At this point it appears I am dying. Married and in love with the most wonderful woman in the world (27 years). She has stood by me thru a lot of crap and I love her so.

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