Before the War

Well, first off, Googling first,birthday,transplant for an image for todays message is not a good idea unless you're looking for a bummer trip. So, yes, here we are, or more importantly here I am, one year after getting my stem cell transplant. I went for my checkup on Tuesday, and everything is going good.  I am off the Prednisone !!! So, now we get to see a big glimpse as to how well my donors stem cells jive with the rest of my body.  So far things have been very good, but I have been on a lot of Anti-Rejection drugs.  Even in its weakened state, my shinny new immune system has been working pretty darn good.  I have been able to dispatch the colds that have taken down the kids with only a few sniffles and coughs. We received the consent form today (how timely, thanks to Sonja) to give consent to provide information to the my Donor. I am back again in 1 month for another appointment to see how everything is doing after the drop in prednisone. I am looki...

....Or so my Aunt Elaine recently put in the wedding anniversary card/gift we received recently (Thank you btw !!). In the writing I sensed a possible "snarky" dig at my complete and utter lack of updates on my progress on this blog.  I could also be wrong :) Anyway, I guess it is about time for an update. In short, everything is going pretty damn well.  I have been to the Abbotsford General Hospital for my 6 week checkup a second time, and everything went well.  It's nice not having to do the long drive in.  I do still have to go into Vancouver every so often to pick up some drugs that are not available out here. My prednisone has been reduced to 5mg / day, but everything else has been held the same.  Once the prednisone has been reduced to nothing for a while, they will start reducing the others. The tingling has gone down quite a bit, or rather I have just integrated the sensation into my normal life.  My muscles sometimes are quite sore in the...

So, I had my first Dr. Appointment in Abbotsford on Tuesday.  Dr. N comes out to Abbotsford every so often to hold a clinic out here.  Everything is on track and status quo.  Prednisone is dropping down to 7.5mg from 10, so in the next few days I will be going through the standard withdrawal symptoms as the body adjusts.  Blood levels are still lower then normal, as expected.  Red and Platelets around 110, with the White good at around 5, but still low on the 'fighter' white cells due to the Anti-Rejection drugs. Hands and Feet are still numb, but I am starting to get used to it when it's minor, but sometimes it flares up where walking is hard.  Something I can live with, and until/if the drugs stop I probably will have to. I have started going to the gym pretty much daily now.  Hurts like hell, but I need to try to get the muscles back or at least stop the loss.  Not to mention I need to work of the extra calories the prednisone is making...

What's up ? Not much.  Again, everything is pretty much as it has been.  I had an appointment with Dr. N on the 24th and the body is still running at par for the course. He dropped my Prednisone down to 10mg daily (from 12.5mg).  Everything else stays the same.  I had some serious bloating on the weekend before my appointment that almost got me to go to the hospital.  I didn't because it has happened before (and even went into Abby General at 11pm once).  Nothing there, gone in a few hours, nothing left to see.  Drug reaction to something I ate most likely. Hands and Feet still have bouts of 'tingles'/numbness.  They have resolved to assume that it is the drugs, so it will probably be there until/if I am off them. Being hungry and weak from the prednisone has led to my wardrobe starting to fit again ;)  I am forcing myself to walk more, do more, etc.  to try and keep one of the few positives of chemo/radiation/etc. (weight loss) ...

So, went in for the EGC tests today.  They wire you up and basically electrocute you in various points to check your 'wiring' to make sure everything is working ok. It's part of the on going testing to figure out why my hands and feet still have sometimes annoyingly serious 'pins & needles' sensations.  I personally feel it is the Cyclosporin, and it continues to point to that, but the Dr.'s want to be certain. After many 'electro shocks' they feel that everything is working as far as the wiring is concerned.  I am pretty certain now that I would not enjoy being tasered.

Sooo, what's up ? Saw Dr. N last week on Wednesday afternoon.  The appointment was for 4, and I got in about 5:30.  I was in at LBMT before that for bloodwork.  If everything goes well and I stay the course, that will be my last visit to the LBMT.  I am now going to the local clinic weekly for a full bloodworkup. I am back in to see Dr. N on the 24th, and in to see the Neurologist on the 12th to see if they can figure out what is the deal with the pins & needles I continue to get in my hands and feet.  Sometimes it's pretty bad. I am still on the same drug dosages from my last visit, so no movement there, but no further GVHD signs either.  Creatine was creeping up a bit last week, so they want me to make sure I drink more. I've been forcing myself to do more physical activity.  I jumped up a few days ago to try and see something on a top shelf, and quickly realized how much the prednisone has messed up my upper leg muscles.  It's an up...

Went in for my LBMT appointment today. Came out missing a hickman lline :) I will be getting my bloodwork at a local clinic now, but it will mean needles every time, and the bruising that goes with it, but it's a good trade. So far, so good.

Once again, I haven't been posting enough.  Sorry. Cancer Dude Stuff  Things are getting better every day. My energy level is up, and I am active the entire day, most days.  In the late evening, crappy stuff starts to kick it, but it is no where as bad as it was just a month ago. My most recent appointment was April 6th.  I was hoping that they would remove my hickman line, but Dr. Mary didn't want to call the ball on that, and was unable to get confirmation from Dr. Nevill. I am back on the high blood pressure meds.  They want it below 150/90, and I was running 154/90.  They give me a bit of a head ache, and some minor light headedness at their peak, but nothing major and it only lasts about an hour. Still on all the drugs, and still at the same levels for the last month.  Prednisone, Cyclosporin, anti-viral, anti-fungal, magnesium, potasium, calcium, vit-d, and anti-pneumonia.  There was a bit of GVHD rashing last time I saw Dr. ...

Once again, I have been neglecting my blogging duties.  I tend to seriously crash starting in the afternoon, and it just gets worse into the evening.  I try in the morning to get everything I need/want to do in the day done, and blogging doesn't make the short list very often. Fatigue, nausea, and just feeling like crap in general.  Like a bad cold. I have no desire to eat, and it doesn't help that my taste buds are not working. Good news is that I am loosing a lot of extra weight.  This is a great diet plan. Unfortunately, the Dr.'s do not share my diet plan view, and they want me back on the prednisone (15mg daily) because they feel that the symptoms are from from chronic GVHD. I really didn't want to go back on the prednisone, as I feel the symptoms of the GVHD are less then the symptoms from the prednisone, but after a few really bad evenings I relented.  The numbness in the hands and feet are a bit worse now, and it is affecting my sugar levels aga...

So, I was in Friday for my 'bonus' appointment to check on my kidneys.  Everything was looking good for just a quick bloodwork, and then home.  They didn't even have me booked for fluids. But, I forgot, it was Friday.. Results came back, and the kidneys were doing much better, but the Hemoglobin was down to 81.  For all you LBMT fan's out there, you know what that means ! Transfusion ! Of course, I don't have up to date blood cross match, and they didn't expect I would need it, so they didn't draw blood for one back at the start of my appointment. I could see the writing on the wall.  I was going to be on the road before noon.  Now, it certainly looked like late afternoon. Sure enough, by the time the cross match was done, and the blood arrived, and the two bags slowly dripped in, it was 5:15.  Rush hour.  On a Friday. Yes, I still feel like crap.  Fortunately sitting in the truck, driving, is not very physically taxing, and pretty c...

Prednisone is over now.  I did the last decrease to nothing on Friday, so that I would have the weekend to suffer the effects, and so that if anything went really wrong it would be there for my Monday appointment.  I had some pretty bad joint and muscle pain, and crippling fatigue for most of the weekend.  The pain was pretty much gone by Monday, but the fatigue is still there. The fatigue is probably caused by lack of eating as the taste buds are gone again along with the desire to eat. Got up early for my Monday appointment, and the commute was crazy light.  The Port Man bridge was only backed up to Johnson Hill - like a holiday or early Sunday morning.  It was weird.  I got in about an hour before my appointment.  It gave me an opportunity to go to the special pharmacy to pick up some more Cyclosporin. Got in to my appointment at LBMT, they took my blood, and since there were no fluids scheduled, the nurse was wondering if I wanted to head off...

So my hair has been coming back for the last little while. With a vengeance. One of the side effects of the Cyclosporin is hair growth.  Seeing as the radiation, chemo, and weight loss had me looking like one of those hairless cats, one would think that some enhanced hair growth would be a good thing. Seems like my body, and the drugs, are making up for lost time though.  I have hair growing everywhere - places that I never had hair before.  There is hair growing out my ears.  There is long hair growing on my fingers.  There is no break from my eyebrows to my beard.  My beard grows right up to and onto my nose. Yes.  Shaving is quite tedious - especially when you have low platelets. I even have slow growing hair in my previous bald spots on my head.  I know what you are thinking guys, and yes, Cyclosporin is a great baldness treatment.  A common side effect of serious and possibly fatal renal failure does make it a bit of a slow sta...

As mentioned in my last post, I was way to sick to be able to do the Lung Function tests they had rescheduled for me on Tuesday, but I was going to try and make the Thursday ones. I wanted to get them out of the way, and even if I was still going to be messed up, I would probably be able to do them.  There was a Eye exam, Dental Exam, Blood Work, and CT Scan. Thursday morning, I poured myself into the truck, and started the drive to the appointments.  I still have the cold, and combined with the drug level changes, I was not a happy camper.  I do find the driving relaxing though.  It's just too bad that with all the construction I have to plan for about a 2.5 hours drive. The first was the Eye exam.  They needed to do a tear production test, and a general slit lamp exam.  The Dr. left a student in charge of doing the start of the exam, but he kept focusing on the previous stuff in my chart instead of the Day 100 tests that needed to get done (I had th...

-Monday = Dosage Changes Again.. -Still in isolation when at LBMT due to virus. -When test comes back negative, isolation restriction will be lifted. -Had been rescheduled for Lung Function test on Tuesday at 8am.  There was no way I was going to be able to make that my current state so I had to call and cancel again.  I don't know why they rescheduled it for so soon, or so early. -Other tests are scheduled for Thursday, and I am hoping to make it to them and get them out of the way. -The drug level changes on Monday really messed me up by 5pm ish last night.  It was a pretty rough ride and I skipped eating.  Not eating lead to a very low blood sugar level.  I knew something was very wrong, and eventually did a blood sugar level, and quickly got some sugar juice in.  The drugs messing up my natural insulin were almost gone, but the artificial insulin was still active and forcing my level down.  I have to plan in the morning for the evening an...

I still have the cold, but it seems to be getting better.  It was too bad to be able to do my Day 100 tests, so they will be getting rescheduled. Next LBMT is on Monday. I am back on the insulin.  It looked like I might be back to working normally after the last Prednisone drop, but no.  Perhaps the next drop on Monday will do it.  It was nice to not have to worry if I am too high, or too low, every time I feel extra crappy. Warning to all the normal people - Don't be breaking your Pancreas.  Diabetes sucks the big one.  Modern Carbs are evil - The "Oatmeal" guy probably wears a hat to cover horns.  The best I have ever felt, and the healthiest I have ever been is when an average meal was along the lines of a big greasy hunk of meat, and a great big salad with oil/vinegar dressing.  Atkins was right - it's the croûtons, fries, rice, garlic bread, or pop, that will screw you over, but they are just so damn yummy.  I know how to screw...

Still have cold virus. Pretty nasty.  Mostly at night.  Can't sleep.  Prednisone dosage change on Monday from 15 to 10 is having a big effect on my system as well.  Walking is pretty messed up.  Feet and Hands are still numb most of the time as my system stabilizes and I work out my insulin dosage. Forgot some of my drugs last night when I was sick, so that's probably not helping.  Made up for them as supposed to, but still affecting me. Day 100 tests for the 2-3rd have been postponed. Also, to whoever is calling my cell with caller ID blocked, either leave a message, or unblock you number.  Too sick to talk to marketers and wrong numbers.

Come home, get a cold. Immune system so far seems to be working and keeping it in check.  No fever, and it is playing out like a good old fashioned cold. Interesting change to be sick for a normal reason.  Too bad it is on top of everything else.  I have probably been doing a bit too much when I should have been resting.  A bit of freedom and I don't know what to do with myself. The Thursday appointment went well.  Platelets are above 40 now, which has been a very long time in getting to.  Hemoglobin is holding around 90.  Drug induced diabetes is getting a bit easier to deal with now that the offending drug is starting to be tapered off. Next week is my normal appointment, plus some more time back at the lodge while I go through some more of the Day 100 tests.  It's going to be a pretty exhausting week.

Two steps forward, one step back.  Dance. Quick update - Biopsy test back.  Still all clear of Leukemia, bone marrow looks good.  Good News. Two steps forward. Blood tests for the day came back, and my Hemoglobin was down to 82.  Transfusions are done at < 80.  To keep me out until Monday, I got two bags of red cells.  First transfusion since being in the hospital.  Spent the day at the LBMT. One step backwards. They are not too concerned. I am not "too" concerned. I have made it home for the weekend, I will be back at the lodge on Sunday night for my Monday appointment.  I am hoping for some good bloodwork on that Monday, and check out of the lodge on Monday afternoon with my next appointment on Thursday.  I will probably be making more use of the lodge for 1 night stays for the tests coming up. If the bloodwork is not what I am hoping for, then I guess the plans will be different.  One day at a time.

Twas the night before Biopsy, when all through the lodge every inmate was stirring from the alarm on the Dodge. The stockings were tossed to the bedside floor dregs,  they had caused quite a swelling the the dry lower legs. Patients were nestled, not snug in their beds, as they argued over snoring, and temperature, and who would shower first, or who would just hog the bathroom and  be an all around jerk to the other person.   But, that is another story, and someone elses problem, because I am rooming with my Mom, who is no where near as bad of a jerk as some of my other room mates, and more importantly, it's Monday the 17th, and besides being my Step Fathers's Birthday, it's HAPPY BIOPSY DAY ! I hope you all had a great Biopsy Day ! Sonja failed to get her paperwork in, so once again, it was just me getting a biopsy this time around.  Mom mumbled something about being too old for the biopsy.  There was this other guy there getting one, and he wa...

Sorry. This is the first time I have turned on my computer since my last post. Things have been pretty rough. If you have been following Sonja's blog, then you have an idea of what's been going down. On the Sunday, way back in December, during the Toilet Install weekend, I started to feel some discomfort when taking a leak.  Well, over the next week it just started to get worse.  I wound up getting bladder spasms, a lot of blood in the urine, and passing a lot of clots. It started getting worse, and I couldn't be away for a toilet for more then a few minutes.  The pain (and mess) was unbearable.  I was in at LBMT for my fluids, and by the end of the appointment, I was being admitted back into T15.  The writing was on the wall for having a pretty bad Christmas.  Things are finally starting to return to normal for the bladder, but I can barely walk because of the Prednisone.  It messes up the upper leg muscles.  I was able to get hom...