Before the War

Richard says he is feeling a little too rough to blog at the moment. You can choose to wait for his next entry or siphon through my blabber over at A Day in the Life Of AJ and Dexter to read about how Richard is/was doing. Thanks for all of your continued love and support for our family, in particular, Richard. Love Sonja 96 to go

So, it's done. Late last night, just after 11pm, the stem cells from my brother/sister from a different mother were dripped into me. We have pictures, but I will let Sonja upload them as they don't seem to be working on my computer right now.  Sonja was able to stay the night, and the will be here the next two as well. The procedure went well, and there were no complications from the actual transplant.  My persistent hiccup's were the biggest problem and made it very hard to get any sleep.  It has become quite painful on the chest muscles, and it's like getting the wind knocked out of you each hiccup, and gasping for breath. I am getting the immunosuppressant drug cyclosporine put in me now, and later today will be the research drug that will hopefully reduce the changes of a bad graft-vs-host reaction.  Tomorrow I get the first a 4 doses of a real nasty one I can remember right now that promises to do quite a number to my GI tract (primarily the mouth)....

So, today was day 1 of the radiation therapy.  As expected it was pretty uneventful.  You lay down on a bed with wheels that sits about 3 inches off the floor. They have target marks on my chest to align me up under the machine that looks like a late 70's space ship decked out in late 70's early 80's medical equipment garb (Slightly Green Brown putty colour). The line up has to be spot on to make sure that the dosage is correct over my entire body.  Everyone draws straws, and the one with the shortest has to stay in the room, everyone else buggers off.   I think it might be rigged since I have gotten the short straw both times now. You hear an air ram place the radioactive material into the aperture, and the head of the unit begins to swig back an forth shining a beam of radioactive energy from my head to my toe, and then back again.  16 swipes in total. It doesn't feel like anything - just like getting an X-Ray.  Just a lethal dose.  I th...

So, there it is.  The glass bottle hanging there.  It's full of cycloPHOSPHAMIDE.  It's job is to utterly and completely destroy my bone marrow.  There is no turning back, and the only fix is life in a bag on Wednesday night. So far, it's not too bad.  I was nauseous yesterday afternoon.  I barfed this morning after waking up, but I didn't have anything in my stomach but some green Kool-Aid, so take that nausea, booya ! My energy level is falling - mostly from the crappy food.  I can't wait to get out of quarantine (tonight) so I can get to the fridge where my extra food is.  As is, I have gone through way too much of my 'goodies' in my room and Sonja is going to need to resupply me ;) Not much to do, and I can't seem to focus on anything productive computer wise, so I spent most of yesterday afternoon and evening playing a game.  It kept my mind off the nausea, and I hadn't played in months, so it was good that it all worked from the ...

Well, here I am again.  Sonja and the boys got me all settled into T15. In the deluxe corner suite all to my self, with my own shower, and a window. Sometimes I think they assign the rooms based on how shitty a time you're about have.  If so, I am in for a doosie.  Thankfully the TV is very 'staticy', there are some noisy drain pipes running behind my closet, and the view is over towards UBC instead of the far nicer False Creek area, so things might not be too bad.  A research nurse mentioned that there are a few bigger units, so that's a good sign too. Chemo starts tomorrow for three days.  It's a pretty high dose of some really nasty stuff that I can't remember right now.  It metabolizes into some other nasty stuff that will mess up my bladder if it sticks around there. You know what that means ?  They turn me into a high volume urine production factory.  Right now I am on 3 bags of fluids, and they will be pumping it in fast and furio...

There are not too many things in all this that actually hurt.  I get sore, nauseous, dizzy, rashes, itchy, hot, cold, etc.  Sometimes I have been so sick that it would be hard to keep going if I didn't have so much to keep going for.  That is sick. But actual pain is not common. Today I got a full on, pillow biting dose of it.  The biopsy today was hands down the worst of the 10? I have had so far.  The pain was mostly from the extraction of the aspirate (goo).  It was down the entire leg and it was bad.  I lost control of the verbal locks and the pillow got quite a cuss smackdown.  That is with an Adavan and Morphine. Normally I am all fine by the end of the day, but about 12 hours after the event, I can still barely walk, and it still is sore all the way down the leg. The lumbar puncture later in the day was a walk in the park in comparison. If men gave birth, and it hurt anything like I just experienced, everyone would be an only chil...

T Day (Transplant) is October 28th. In preparation for that day, there are a bunch of tests being done to make sure they don't kill me before they even get the goods in. Today was a Lung Function test, a chest x-ray, a ECG, a slew of blood tests, and a day worth of piss test.  Well, the day of pissing into a bucket was yesterday. The morning started at VGH at 8am (yuck) for the lung function test.  You get into an airtight booth, lip lock a spigot, and do what the tech screams at you.  Yes, screams at you. She explained it all, then started the test, and then turned into a curling skip.  "Big Breath !! In, In, In, Keep Going, IN, IN, IN, Out Out !! Out, Hurry Hard !......." Shocked me so much when she first went off, I messed up the first test. Anyway, about 30 minutes of a lot of breathing all the way in, all the way out, holding it, etc. Then off for the chest X-Ray, then up to LBMT for the blood work, and to drop off my bucket of piss.  They su...