Day +74

The ever present cough is still making my sleeping life miserable.   And my propped up in bed life too.  As I said back a few days ago, Dr Scott the lung doc said it could take 2 months for this cough to go away.   That sucks.  At least its better than it was.   Let me take a moment to  spout the joys of Advair.  Yeah, it’s an inhaled steroid.  Yeah, you have to gargle after you use it and brush your teeth to get the steroid out of your mouth.  But let me tell you, as I type this propped up in bed.   Advair is making the cough livable, much to my surprise.

It’s day 74, by my best recollection.  Today  being Monday, I would normally be going to see Dr Alkateeb or one of the many nurse practitioners who fill his place on a semi regular basis.  Lucky for me, he cut my visits down to once a week and that day is on Thursday.   So today consisted on me getting up, going downstairs for a blood draw and then coming back upstairs, playing some CIV4 Warlords, then taking a nap.  Yup, if it wasn’t for the blood draw, today would be another boring day here at the Gift of Life Transplant House (which is what almost every other day is).

Teresa made lasagna on Sunday.  Not just any lasagna.  The 5 hour World’s Greatest Lasagna.  Yup, she spent 5 hours in the hot kitchen making lasagna for me.  Then after we had ours and saved some for lunches, she put the rest up for food donation to our housemates.  Last we checked, there was 1 piece left, and we reckon that is from the fact the he/she who has the last piece has to do the dish.  And man does lasagna make a messy dish.  Teresa hypothesized that no one will eat the last piece because no one wants to hand wash the dish that it was cooked in.  Anyhow, it was really good lasagna, the only problem I had was the sausage we are used to using back home has a zing to it and the sausage here didn’t.  So it was missing the kicker.  But beyond that it was yummy.  And the dozen of so other housemates gave it their seal of approval.  Yeah, my wife loves me, she does nice things for me.  I love her more of course, but don’t have the energy to do much about it.

Teresa also went to the Farmer’s Market on Saturday.  She got up at 10am on the weekend to do it.   So she must have really wanted to go.  She got Radishes, Cucumbers, and Tomatoes that taste phenomenal.  She said it was fun.   I would have went, but as per usual, I felt like crap when there was something fun to do.

I don’t think I mentioned these before, but I have the shakes.  My hands shake cuz of the anti-rejection med.  Side effect : Shaky Hands.  So bad that the only game on the computer that I can play is Civ4.  And at night, that is even iffy.  Can’t click anything exact in any other game cuz I shake the mouse too much.  So, I am getting a lot of Civ4 Warlords in (big clickable areas).   Still haven’t beaten it on Conquest without nukes (haven’t beaten it on Conquest with nukes), I get bored or I make a stupid mistake and end up starting over.   One day I will beat it.  Just maybe not today or tomorrow, but some day.

The rash is virtually gone.  A few small spots left.  I am shuffing skin like mad.  Off with the bad skin, leaving nice skin in it’s place.  The rash doesn’t itch, the shuffing does.   So I find myself unconsciously scratching places that used to have the rash on my body.   Luckily I did not get the rash anywhere below the belt.  Mostly my back go hit, my shoulders, my head, and the back of my hands (my knuckles, go figure).   A baldish head shuffing is and ugly site.  So Teresa bought me a hat.  Extra big to fit my big head.  With hat on, and mask in place, I don’t feel so self conscious about going out in public.  Yeah, I still look like a cancer patient, but at least the nasty shuffing is hidden away for the most part.

Teresa likes it cold in the room.  I have problems with heat/cold regulation do to the leukemia.  She runs the chiller and I end up putting on a sweatshirt to keep from freezing to death.  We are still working on finding a happy medium.

26 days to go.  Hopefully only 24, and not 27.  The 26th of August falls on a Sunday.  Dr Alkhateeb doesn’t work on Sundays.   He has to let me fly on a (hopefully) Friday, or make me wait til (booooooo) Monday.  I am still weak.   I still have a tiny bit of the rash.  But my numbers all look good now.  Dr A is a good doctor with sometimes horrible communication skills.  He is being really thorough.  He found out that I was woefully low on Vitamin C.  We are talking scurvy numbers, you know like pirates used to get.  But no, I didn’t have scurvy… yet.

They did another chimera test, and once again I was 100% in control by the German cells.   Sweet.  Now we just have to beat them into submission cuz they seem to have a mind of their own.  Thus the chemo “bump” I will be getting.  Make me feel crappy again, but should be worth it.   Will have to make a lot of trips back up here.  Hopefully we can schedule them for day trips so we don’t have to stay in the Gift of Life Transplant House.  Not that it has been horrible here, just we have a limited amount of money that insurance will cover and I don’t want to waste it on trips we can make it one day instead of 2.

So, a blast from the past.  Thinking about Teresa.  I didn’t get to listen to it before posting, so hoping the quality is ok.

Author: Jeff Campbell

I am 50 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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