Before the War

Still here, still confined to the ward like most, just waiting for the high fevers to go away. The blood cultures showed up with Citrobacter, so that is what they are targeting with the drugs now.  There are moments of feeling ok, but mostly it just a really really sick feeling, the kind where you just want to lay in bed and let it pass. Monday W 0 H 84 P 15 (got platelets) Tuesday W 0 H 70 P 19 (got blood and platelets)

I haven't turned the computer on since my last post on Wednesday. I am still at the hospital because my fever has been too high.  I might get an opportunity to move out on Monday but it doesn't look promising.  Thursday: Sonja brought out the boys for a visit in the late afternoon.  They left early in the day, and headed to GranDan's (Sonja's Dad) for a visit and lunch. They watched a movie and ate their dinner as they stretched out on my bed resting against me.  They lasted about 2 hours which is a new high, especially considering it was the end of a very full day for them. W 0 H 84 P 8, so I was in for a bag of platelets and that bumped me up to 29. Friday: 5 years ago, Sonja and I had one hell of a party, and thanks to everyone who helped pull it off.  Fast forward 5 years, and I am getting the very tight stitches removed from my Hickman line. Sonja comes to the hospital to stay the night, and most of the next day, as the kids stay and Grandma an...

So, here is the current situation. Tomorrow morning, they will be taking my routine blood work, and if needed I will be getting platelets and/or hemoglobin as required, in hospital. My numbers are not falling very fast, which is good, the symptoms are not getting much worse, and my fever is under control.  I am in a good position for checking into the lodge. Tomorrow afternoon, Sonja and I, and perhaps the boys, will be moving my stuff from VGH to the Cancer lodge where I will be checking in for some time to come. Of course, if my temp spikes, etc., yada-yada-yada, everything changes. They have a few possible candidates in the world match database for a transplant, and they are also looking into cord blood as a possibility to expand the match.  So far no "sweet" match, it's sort of a "best we can get" situation. I will be having another biopsy once my numbers start to return to see if the chemo put me in remission.  If not, then it's probably out...

I'm going to try point form. Tuesday Morning: - I feel like I have a bad flu.  Not really eating, loosing a lot of weight, etc. - General infighting, mis-organization, etc. around me being discharged.- Confusion, and general disarray around the fact that there is no "where" to discharge me to.  Due to construction, Abbotsford is no longer a "commute" to the LBMT Clinic at VGH - Social worker, once again, is frustrated that "they" aren't using any common sense.  Both her an I are working the Cancer Lodge to get a spot. Tuesday Day: - My meals have been all screwed up.  Nothing new, but not helping the day. - My room mate Barry hasn't had a bowel movement in a few days, and they are prepping him for a contrast CT scan. - With nothing to do but sit, wait, and think, general overwhelming depression sinks in as I worry about the symptoms progressing, getting from the hospital to the lodge, etc, etc.  I'm just a pathetic useless lump on...

Monday, Blah, General Malaise. Nothing unexpected today.  The gut rot is starting in, and the hemorrhoids have started back up.  As expected, platelets were on order today. I had visual migraine just around lunch.  The last time it lead to a hemorage in the left eye, and a permanent blind spot.  I was on blood thinners at that time though, and this one went away in about an hour with any effects. My tastebuds can sense the storm coming, so they have started to pack up their stuff, and head out.  Judging by what's going on down below, they are taking the scenic route. The 'intern' doctors are continuing to think towards releasing me this week.  As always there is a shortage of beds, but it was expected to be 20-30 days so that was what I am working on.  I don't mind heading to the lodge if there is a spot, but I can't commute 5 hours a day, leaving at 6am, getting home after 7pm, every day in this condition.  All it takes is one fever rea...

Day something or other - It's Sunday night.  Tonight will be the last infusion of Chemo Drugs.  Nausea this time around is worse then last time, but the occasional top of of funky drugs, and gingerale. The upper stomach/esophagus pain has pretty much subsided, so eating and sleeping are about as normal as I can expect here. Taste-buds are starting to go, and the effects of the chemo are starting to show.  Should be a fun week coming.  Jello Poo and Hemorrhoids on the docket. The hick-ups have returned, but not as bad as the drugs they give to to reduce them.  I worked out a growling, low mouth exhale thing that seems to stop them long enough for me to get to sleep when I need to. I guess they are hunting for beds so the "Fellow" doctor was hinting about getting out early.  I was surprised, but doubtful, especially after talking with Dr. Nevil just the other day.   The only way I can get out is if there is space available at the Lodge as I ...

Sorry for the lack of updates.  When I don't post for a day or two, you can be sure that I am not having a Happy Fun Time. Auntie Kim took the boys for most of Wednesday and Thursday so Sonja could come spend the night with me.  Thanks soo much Kim ! My food had been buggered up again, and a cold hard boiled egg and cold porridge just isn't going to happen with the constant nauseua. Sonja arrived in the early afternoon, and we sorted through laundry, went though the pictures from the boys, etc. I was feeling pretty crappy, so I was in the bed sleeping most of the time, but it was great to have her there, even an arm on my leg, or a kiss on the cheek every so often.  I am having some very bad upper abdominal pain, and it is making it very hard to eat, move, sit, think, etc. While Sonja was here, the nausea hit pretty hard.  I was sitting up on the bed for awhile trying to stabilize myself while the nurse found  a clean bucket to barf into.  I got a...

So, it's in. The red goo of doom, the fiery red headed vixen Donna, the breaker of hearts, aka Daunorubicin made it's first of 3 visits today.  Joining her was the ever vigilant clean up man, Cytarabine, aka Ara-C on his first of 5 visits. Together they are blasting away through my body, killing Leukemia cells.  Unfortunatly it's more of a "scorched earth" policy, and they are going to pretty much destroy all the infrastructure on the way.  Much like a team of Blackwater security agents, anyone who looks wrong is probably doing something wrong, and better be delt with.  See, that guy up there, he is yelling at a taste bud who is loitering.   It's not going to go well for the taste bud who is refusing to "move along".  The report will show that the taste bud was I high ranking Al-Qaeda member, and he was found with a IED on/in his person. My platelets were down to 20 today, and they gave me a transfusion.  That comes with a dose of IV Benadryl, ...

Sorry for being a total killjoy on the last post.  It was important for me and needed to be done for me to continue to manage the stress. Dr. Nevill was not in Vancouver today, so I met with one of the other lead oncologists to ask questions about the experimental trial.  After talking with him I decided to go for it, and so began a flurry of tests to make sure I fit the criteria, etc. I was accepted into the program, and I was randomized into the "Control" group to undergo the one of a selection of standard treatments.  There was a 2:1 chance in favor of getting the trial drug, but I didn't get there.  I don't feel bad about this as it could go either way, and in regards to the last trial I was part of, it turned out to be a good thing.  At  least in the short term - perhaps I would not have relapsed if I had it, or perhaps I would have been one of the patients who the trial went badly for.. So, based on my various heart tests today, they feel I am s...

The title is intentional.  This post is for my boys.  Everyone else, it's going to bum the heck out of you, so save it for later.  Chemo starts tonight.  I will know later if I have been placed in the research arm or not.  It's going to be hard on my heart muscle, and after I will be close to my lifetime limit for Daunorubicin. I'm not putting it a file on my computer, to be overlooked.  I am not putting it on an email to be lost in the confusion.  There is much more to say, and given time more will be said in and put in those places.  I put it here because the message will be carried to them by all who read it as they grow up, should I not be able to. AJ and Dexter, Daddy loves you both more then anything in the world, save your mom.  Both of you are the greatest thing I have ever been a part of, and in each of you I see those parts.  Hopefully I will continue to shape those parts for many years to come, to bring out the ones I li...

Another rough night, but I managed to get some sleep on and off.  There is a lot on my mind, and the stress combined with the change in diet is doing a number on the digestive system - at least that is what I'm told.  I don't understand this stress thing they're talking about.  Medical mumbo jumbo. My 48 hour quarantine will be lifted tonight, and I will be allowed to Leave My Room !  It's a small freedom, as I am still not allowed off the floor, but I can at least do something more then walking in place.  In a few days, once the chemo hits, I doubt I will find it as exciting. Sonja and the boys are planning on showing up later this afternoon to bring all the things I forgot, and to visit for as long as Dexter remains stable :)

So, here I am.  Again.  Level 15 at VGH.  I am in a room with another guy who is also on his second kick at the can.  Last night was shit.  The hickman surgery sites were so bad that the pain felt it was coming from everywhere.  Back, Arms, Neck, etc.  I normally sleep on my side, and the pain was preventing that.  They gave me a codeine, then another codeine and it wasn't having any effect. Just sitting up, on the edge of the bed became the least painful.  I guess at some point, while sitting on the edge, I figured I would just rest my head on the bed table.  It must have been comfortable enough, because  I fell asleep and Shoban (my nurse) woke me up. He spoke with a doc and I was loaded up with some Morphine.  I fell asleep in about 10 minutes, and stayed asleep till dawn (about 3 hours). Up early this morning for standard chest x-rays, and later today/tomorrow I will be getting an ECHO heart scan to make sure my hea...

5:30, Alarm goes off.  Smack it for the next 15-20 minutes.  Shower, dress in an easy to remove shirt.  Kids wake up, chaos, everyone in the car and we're on the road heading for VGH for a 9:30 appointment.  I think they scheduled the Port Man bridge twinning to coincide with my relapse.  They could have at least told me - I would have planned better. We get to the LBMT clinic, Sonja switches to the drivers seat and heads off with the boys to a park.  I head up, check off my name on the board, grab my chart, select my room, take and record my vitals, and wait for the nurse to come draw my blood. It's like riding a bike.  It all comes back to you. In an unusual twist of events, I didn't need a transfusion, so I was released around noon.  A record performance. The current plan : Tomorrow, I get to go to an Abby clinic for blood work (Yay!) Friday morning I stop eating and drinking and I go to LBMT (Vancouver), get more blood work, tank...

Well, you see, all it takes is just one of those little bastards.  Just one, among gagzillions of cells, to manage to find a nook, a cranny, a duggout to hide, and with a few short months, you have Leukemia again. I had my routine monthly blood test on Wednesday last week.  Thursday Night, my Oncologist, Dr. Neville, called me.  Despite the rumors, when your Oncologist calls you after hours, the new is generally not good. My platelets had dropped down to 27.  He wants me to come in for a biopsy, chances are the Leukemia is back. Sonja and I went in today for 8:30, biopsy 9:30 to 10.  Platelets down to 15, so I get a transfusion.  Early biopsy check shows Leukemia.  Out just after 3:30, meet with Dan (Sonja's Dad) to pick up a car seat he had from his last visit here, and get a bite to eat.  Then back to Abby, pick up the boys from Erica's (Thanks soo much!), and home. I am back in at 9:30 Wednesday for bloodwork, and if a bed is availabl...