Before the War

I was in for a few tests and a regular LBMT appointment on Tuesday.  In the morning was a MUGA scan (radioactive dye heart scan), then after that was a meeting with the surgeon from the hospital about the arse issues (diverticulitis, etc.).  He doesn't think there is anything to be worrying about, and they don't plan to be doing anything before the transplant. In the afternoon it was the LBMT appointment, and then a ECG scan.  I am back in again on Tuesday/Wednesday for more tests in preparation for the transplant. Wednesday we all went out for some family fun.  The first destination was going to be Mann farms for a petting zoo, corn maze, etc. but they didn't quite have their act together and had neglected to open.  We headed back home for lunch and nap, and then went to the Zoo for the afternoon, and then to Burger King for dinner.  It was a very full day, and I am a bit exhausted still.  I am sure Sonja will provide a more detailed report on the day's events. 

I was back in at the LBMT Thursday afternoon for blood work, hickman line flushing, and news. The good news is that there seems to be a very good chance that they have found a bone marrow match for me.  Dr. Bernard, who gave me the news, said a "95% chance" - mostly to give an out, as there are a lot of things that can go wrong still. I don't know how far along they are in the process with the donor but they are looking at starting the transplant in the next 2-3 weeks, early-mid October.  I will know more shortly after a yet to be scheduled meeting with Dr. Nevill. So, if you are one of the recent people who signed up for the registry, and have been magically called as a match, you might very well be my blood brother/sister so to speak - lol. The coming transplant scares the willies out of me as it will be the most intensive event I have been through in this whole thing, since the start over a year and a half ago.  Any grief, discomfort, etc.  I have been thoug

Biopsy was Friday at 8:30. Erica took the kids at the crack of dawn so Sonja and I could go in by ourselves and she could be there for the biopsy. It looked like Dr. Mary would be up to the plate again, but no, it was Dr. Bernard.  Dr. Bernard is the one they send in to the "young men" to scare them into calling when their fever goes to high.  She was the one who gave me hell for going to the waterslides last year with a low immune system. Dr. Bernard is a very different lady then Dr. Mary.  Her build is not very different, but the biopsy was powered by attitude instead of physical strength. Needless to say it was one of the roughest, and quickest, biopsies I have had. I am still not sure if that is a good thing or not. Late Friday, Dr. Bernard called to say that the preliminary results look like I am in remission, that my next appointment will be Thursday, and that I will probably need to start doing consolidation chemo as they still do not have a bone marrow mat

Sorry, a little late on this post.  They gave me the all clear on Monday afternoon to not have to come back to the LBMT until Friday morning.  I took the opportunity to get myself home as quickly as possible. I still feel like crap, and have no energy to do anything.  This is the first time I have turned the computer on since I have been home. Tomorrow morning I am back in the LBMT for another bone marrow biopsy.  This one will see if the 4 week hospital adventure resulted in remission or not. I am still not too sure what happens (and no one I ask seems to have anything more then a vague idea) after the results are back.  I know that I currently have no match for transplant.  If I am in remission, then it seems I get to wait and have some "do it yourself at home chemo" every so often to try and keep me in remission, and if I am not, then it's probably back into hospital for another try. Hopefully some of my energy will start to come back, and I can pretend to be m

So, if you have been reading Sonja's blog, you know that I am in the lodge.  Things are not as good this time.  I am so fatigued.  I was hoping that my massive fatigue at the hospital was just caused by lack of food - not enough energy in. I was hoping for that magic hamburger, just like last time, that turned me around.  Alas, the burger came, and went, but the fatigue stayed. I can't do anything, and I just want to sleep all day.  At least I am getting nourishment here, so hopefully it will start to resolve itself.  The place is boring as heck right now, which fits my condition.  I have been able to walk to the LBMT.  I just bundle up, and sort of zone out and let my legs just repeat the motions.  Sooner or later, I am there.  It's up hill there, so it's nice to walk back. Tomorrow I have an appointment at 2pm, for IV Antibiotics, bloodwork, and a re-assessment if I need to continue the Antibiotics.  I am hoping not.  The next time they need me in should be fo

So, Hope is about 45 minutes out of Chilliwack.  I'm was raised in BC, so we measure distance in time.  Unlike the prarie roads where you could set your cruise control, bungie down you sterring wheel, and be good for a few 100 KM, we have roads with flavor.  On the time scale, Vancouver from Abbotsford (64K) is the same as Abbotsford to Kamloops (286K) in good weather. Hope is also what I have today with a White count of 0.3, and some of my own hemoglobin at 96, and platelets still sagging at 20 (got some today). My fever is finally spending time below the 'fever' level of 38.0 on its own without tylenol to fix it.  It's starting to creep up in the evening as it tends to do, but the trend over all is something is getting fixed, or not as angry. Food is still my big problem.  I vomited my breakfast up again this morning, but was able to get some lunch down, and with the help of anti-nausea drugs get a fair bit of supper forced in.  They have me on another drug to h

So, it's almost 4am, and I can't sleep.  To much on my mind - Is the furnace going to be ok, car ok, etc, etc, etc..  I could get an Adavan to help me, but I seem so awake, and have some energy, so I figure I will post a blog update. I haven't been awake all night, just since about 2:30. Last post was on Wednesday so this will cover a few days. Everything is pretty much the same.  High fever, bloating the comes and goes with visits to the crapper, no desire to eat, everything tastes like chemicals, and I have no energy to do much more then a walk around the floor every few hours. Friday night, and most of Saturday Sonja was here with me.  I miss her so much and I can't describe how much better it is just to have her near, even if it's just in the chair reading a book.  Thanks to all the Grandma's and Grandpa's and GrandDan's that made it a possibility. Of course, the next day or two is like having the drugs taken away, and I go through a bit of

Wednesday The fever isn't breaking.  I am scheduled for a chest and abdominal CT scan. Falling asleep at this post :) The CT scan showed the lungs clear, so the cause of the cough is undermined. The bowels showed some diverticulitis, so they will be keeping an eye on it, and this could be a source of infection.  As long as it doesn't turn into a blockage, everything will be ok, they say.... If it does (blockage), then bad things happen (ie. Roommate).  I am not eating much which is easy as I have no appetite what so ever.  What I do eat is 'low residue', so I guess the stomach gets most of it.  Damn Bran Muffins ! W 0 H 84 P 20 (two bags of platelets, and that bumped me up to 34) Thursday Yay, more fever, more cough, and incontinence ! The lungs are clear, but that tickle is back in the morning and evening, and when talking.  I keep a Ricola handy now to ward of the attacks. I had a decent bowel movement later in the morning, and helped clear out a bit a

Wow, I didn't remember turning on the computer and making that Tuesday post. Monday: I had a bone marrow biopsy in the morning.  It was a bit a surprise to me, and my nurse didn't know anything about it until the "Bagman", a lab tech that has all the tools showed up for my 8:30 scheduled biopsy.  I thought sometime this week, probably Tuesday.  Not 8:30 Monday. My nurse that day, Shoban, quickly sprung into action, and had another med line in me for IV Morphine, and an Adavan under the tongue to settle my nerves.  This is how it started with my last hospital biopsy, but the nurse give me a morphine pill instead.  That was definately one of the worse ones, and this, after all was said and done was one of my best. That, along with a horrible nighttime sleep, took me out of action for most of the day.  Fever still runs around 39c That took me out for the rest of the day W 0 H 84 P 15 - Got a bag of platelets, and the after platelet count was still 15, so I got