Before the War

Richard's been admitted back into the hospital. Hoping he'll be home for Christmas. Until he updates on here again, feel free to keep up on his whereabouts and wellness HERE .

Good news - Sonja and I (Mostly Sonja) removed and installed the new toilet in the main bathroom on Saturday.  The old one was original with the house (circa 1970), and that made it pretty hard to get out.  The nuts were rusted down to balls, so we had to lift the whole thing out instead of the tank and bowl. The old one was leaking.  We thought it was just condensation, but then it became worse.  I was hoping for just a wax seal replacement, but given the state of the toilet, and the amount of work and parts needed to put the old one back, we bit the bullet and got a new toilet, and some more debt on the Home Depot card.  They had a HST off sale, and we get a $50 rebate from the city, so it will work out to under $100 once the smoke clears.  The wax ring was shot, as expected, but the flange plate was good except for a loose screw which was filled, glued, and replaced with an oversize one.  Water damage was minor, and confined to...

Today was a 10am appointment.  Got out early for the about 2 hour commute, and arrived on time.  They still wanted to do fluids today, so I was already into a 2 hour appointment. The platelets are down again, to 64.  Quite a drop, and due most likely to one of the drugs I am taking to prevent a type of pneumonia that I can get from the ciclosporin.  I only take that drug on Monday and Thursday, which are both days where my platelets were low. So, now the solution is to get an IV alternative (2 hour drip) once ever two weeks.  They started today, so my appointment became an extra 3 hours longer.  There were a whack of side effects I could get, but other then a bit of nausea it was ok.   Ugg..  Didn't get out until about 4pm, smack dab in rush hour.  Long slog home, and just bagged out on the couch now to write the update. It's been a long day.  I have until Monday to recuperate to do it again.

So, the appointment was for 10am today.  I was up just before 6.  Rather, I got out of bed just before 6.  I have to take a pill at around 3am, and after that I pretty much don't sleep.  I just lay there as my mind spins around the seemingly endless supply of stuff to worry about other then cancer. I usually get out my MP3 player at some point, listen to some audio books, and that has helped settle my mind and at least get some half asleep time.  I think I have listened to the same chapter like 3 times now. I made it to the lodge in the morning after 9, checked back in, unloaded my stuff into the room, parked the truck, and walked over to the LBMT. The Creatinine levels were down today, but my blood sugar levels are up.  They say it is due to the still relatively high dose of Prednisone blocking the natural insulin.  So, now I am monitoring my blood sugar, and taking long duration insulin to follow the Prednisone levels.  My platelets we...

So, this week I had a Monday, Wednesday, and Friday appointment.  After the Wednesday appointment, everything was looking good for being able to cancel the Sunday appointment, and come home for the weekend. The plan was to come home for the weekend, and drive back for Monday for my appointment.  Nothing ever quite goes as planned though :) They hooked me up on Friday, and did my bloodwork.  The results came back, and my Creatinine levels were high again - on a steady increase over the week.  They hooked me up with a second back of fluids, and it looked like they wanted me back for at least Sunday.  After a lot of bargaining about drinking even more water, and the head Dr. wanting me back for both Saturday and Sunday, we worked out a deal where if I learned how to flush my own lines, and hook up my own IV bag, they would let me go home with two bags of fluids for the weekend. I think my nurse Nancy had a big hand in that, so I was very thankful for her e...

Well, hopefully some of you have been checking on Sonja's blog for the latest skinny on what has been going down. It's been pretty busy for me the last few days, and the spare time has gone into just resting.  Getting out the computer to make the blog post just doesn't rank up on the 'thing to do next' list. In short, over the last few days, here's what has gone down. They let me out of T15 - Yay!! Checked into the Cancer Lodge and got in the same room with Mom. It was a very busy day checking out, and moving in.  It's surprising how weak you can get in a hospital bed for a month.. :) I had my first out patient appointment (post transplant) on the 26th (Friday). Early in the morning - 8am - yuck. They topped me up with fluids and magnesium. Blood work was ok, but because I didn't get enough water into my body on checkout day just from being to busy and tired, my liver function levels were a bit off, and they wanted to bring me in again on ...

We'll have to see how it all pans out, but the current plan is to be discharged to the Cancer Lodge tomorrow. The room is booked and hopefully everything will work out for a visit back home over the weekend. Again, everything is day by day since the pitfalls of the transplant can hit at any time, and make me pretty sick, and even put me back in the hospital. Day by day.

Numbers are good - 3.7 White, 93 Red, and 101 Platelets.  If everything goes as planned, my numbers are pretty much going to be heading back to a normal person over the next few months, so I am not going to bother mentioning them any more unless something goes wrong. Sonja was over for an extended stay from Thursday night until lunchtime today.  I was missing her something fierce, so it was real good to have her around.  Just having her in the same room is so good. The snow came late on Saturday night, and made for a very nice view out the window.  By the morning the rain had "slushy crapped" on everything so it wasn't near as pretty. My throat is slowly getting better, and I am trying to eat some normal food.  Getting off the IV food and taking the pill versions of my meds are the only things keeping me in the hospital now.  Saturday night the last of my IV meds becomes a pill, and I am hoping they switch me to 1/2 IV food for tonight's dose as well....

So, my numbers are going up / holding now.  White cells were 2.3 (with 1.1 neutrophils), 88 hemoglobin, and 62 platelets.  I could technically use the exercise bike here should such a silly thought cross my mind. My mouth is healing up nicely, and I am no longer on continuous morphine drip for it.  The throat is still pretty nasty though and is keeping me from eating or drinking, and still using the suction for my own saliva.  I'm going nuts for a nice cold glass of water - it just hurts too bad.  Hopefully soon that will heal, and things will be better. Coming off the continuous morphine drip has removed it's constipative side effect.  As a result, I am now wearing Pull Ups just like Dexter.  Just a bit bigger, and Buzz Lightyear isn't telling me how great I am doing.  Also the only treat for making it to the potty before all heck breaks loose is that I don't have a massive cleanup operation.  Fortunately the nausea seems to have backed ...

The white cells jumped up to 1.3 !!! Although his throat and stuff is starting to feel better, he's been vomiting a lot, so he had a really crappy day. In fact, I think both of our phone conversations ended with him needing to get off the phone to throw up.

Ok, it's official.  I have been in here too long now, as I no longer know what day of the week it is. I seems the graft is starting to settle in.  The white count is up to 0.7, and the others are falling very slow.  The platelets might be gaining, but I had a transfusion yesterday so it's hard to tell.  (I don't have the 'post transfusion' counts). I am NOT feeling much better though.  I am still sleeping/zoned out/etc. through the day, and having crazy dreams, etc. and uncomfortable sleeps through the night.  It hurts to swallow.  So, when your crazy thirsty at night, because you have been sleeping with your mouth open, because your nose is blocked up from not being able to blow it due of nose bleeds, you are in for a world of hurt. I have managed to build up enough get up and go to get the computer on to post on the blog, check facebook, and put some audio-books onto my mp3 player. My blood sugar level was a bit high in my morning blood tes...

The whites are at .2 now! And it appears as though, maybe, possibly, his haemoglobin is stabilizing. It's possible that this means the grapht is starting to take hold!!! So exciting! So scary! Richard says that he's feeling even worse than before. He says his throat is even more sore (he continues to be on IV nutrition and has the suction tube to rid himself of his saliva because he cannot/does not want to swallow). He says his nausea is even worse too. However, to me, he sounded better on the phone when I talked to him this morning. Maybe that just means better drugs! From Sonja, The Wife 87 to go.

Norma (Richard's mom) just let me know that Richard has a white cell count of .1 as of today! That's a good thing! That means his numbers are on their way up! From the Wife, Sonja 88 to go!

Richard continues to be too ill to blog. If you'd like to keep up on how he's doing and progressing, just hop over to my rants at A Day In the Life of AJ and Dexter The part in bold labeled "My Man" is specifically about Richard's well being. In previous posts, those portions are usually labeled "Richard" or "Ricky". 89 to go!

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...

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 t...

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 ...

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...

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 ...

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. ...

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 anot...

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 clea...

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...

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...

So, it's almost a year now. Everything is getting back to normal. I am down to monthly blood tests, and everything is still OK. I am still on follow up with LBMT every few months and also with the Eye Center for the eye blind spot which will probably be there forever. All we can do now is watch and hope it's gone for good, and that I never have to use this blog very often. 30% chance of it coming back, and 90% of the time that happens in the first two years. I've made it a 1/4 of the way through that two years so far. No news is good news.

I went in for my bi monthly visit with Dr. Nevill on Tuesday. My status is as expected.  Some things are still too low / too high compared to a normal dude, but they are all within the normal for someone who just finished quite a few rounds of maximum dose chemo a few months ago. I met with the eye doctor last month.  No change, and there probably will not ever be one.  That section of my retina just gone.  It doesn't really affect my day to day life, and the brain just works around it by using the view from the other eye. I suppose if I ever loose vision in my right eye, then it will become a bit of a pisser though ;) I go for an ultrasound next week, and chances are there will be nothing unexpected in that it will look the same as it did every other time.  Spots that might be fungus or scarring, and now we will just be assuming it is scarring, and I will be coming off the anti-fungal drugs.

In case you are wondering, I am doing pretty good now.  Most things are starting to heal up and return to normal; I just shaved my full beard back down to a Goatee.  I had been letting it all grow. I am still on the anti-fungal drugs 4am, 4pm. They can't tell if what they see on the ultrasound/ct-scan is scarring or fungus, so to be on the safe side, I will be on them for 2 months. My energy is starting to come back, and I am back to a low carb mode to keep in check.  6 months of chemo did a number on my muscle mass too.  Can't even do a single pushup, so I am working on that. I go in for an eye appointment in February, and back to Dr. Nevill in March.  I get blood test every two weeks. The odds going forward are a 30% chance of it coming back, and if it does, 90% of the time it will be in the first 2 years.  So basically it is enjoy life and don't think about it.

I was in on Tuesday for a bunch o' stuff. Eye doc was up first.  I still have the "Spot" in my left eye.  It has remained the same size.  They were running about an hour late, so there wasn't enough time for them to put the drops in my eyes (dentist appointment next) so he couldn't get a better look.  He was unable to see the blood plume from the hemorrhage though, so chances are that the cells around the hemorrhage have been damaged, and that is what is causing the spot.  I am back next month for another look. Next was the Cancer Agency Dentist to finish the temporary filling they put in.  It was lower in the gum line then they remembered, so it took a bit longer to fill, and they had to use many layers of composite filling material. Then some lunch, and waiting around for the next appointment with my Primary, Dr. Neville.  He checked me all over, everything looks good.  Most of the issue are just the remains of chemo, and will take a few...