Friday April 8th 2011

Had meeting yesterday with Dr McGuirk - he is just great. Sorted out any issues we had, also pointed to the adenovirus as being the probable cause for the demise of my old marrow but expects with 90%+ that this stem cell boost will work and have me on the mend in the 10-14 days that it normally takes for a transplant to work. This is something Dr McGuirk has seen in the past on numerous occasions so it is not as unusual as I originally thought (I don't want to be anymore 'special' than I already am).  He also went through the potential plan B,C, D and I think there may have also been an E, plus the likelyhood of needing these to happen which are small. So a lot of fears were allayed.  I got blood yesterday and of course my daily neupogen shot and they also X-rayed my jaw to check it more thoroughly. The jaw x-rays came back fine, no bone problems.
Today my gums are a little worse and have a couple of extra sores so I'll mention that today, I've lost a little weight because eating isn't as pleasurable as it has been but of course my first thought was great, I'll be cycling up hills just a little bit quicker (maybe able to stay close to Kevin's back wheel...in about another 6 months!).
Just got to clinic for my shot and was greeted with "hello beautiful", by one nurse and "hello trouble" by another...today could go either way. Okay so they did a blood test...just in case... and I need platelets, my count was 8, so it looks like I'll be here a while.

Monday April 4th 100 day review at BMT Clinic

IHOP for my birthday

Lovely dinner by Kristy and first glass of wine that has tasted great for a long time.

a perfect moment

Getting more stem cells...and it hurt!

Interesting day but not for the reasons I was hoping. So my review says my myeloma is in remission and we're on track. This is where the conversation should have ended and Kristy and I should have skipped out of there to a small celebration of some kind, sadly not the case. As we know my bone marrow is suppressed and I've been getting blood products and neupogen shots to keep me going. Well last week one of my doctors thought my lymphocyte count was high and that pointed to a particular problem with a particular fix. After talking to another of my doctors he said the opposite, that the lymphocyte count was low....which is a little concerning. This is the first time in my treatment this has happened so I can forgive the error and move on. I did have my heart set on the easy fix that I was led to believe could be the case if the lymphocyte count was high but hey ho!
So my doctors are back to not knowing why at about 100 days post transplant my bone marrow stopped working.
To add a little insult to injury, the last 3 or 4 visits I've had to the clinic I have mentioned gum/tooth pain with swollen lymph glands. This was pretty much passed over until today's (Monday's) visit. My face/jaw is now quite swollen on one side  and I have an abscess. This happened I'm told because my wbc is still low (0.6), so I'm open to all kinds of infection with no defense. So they started me on IV antibiotics and decided I should get another stem cell transplant/boost...now! The stem cells are the next attempt to raise my counts and kick start my bone marrow so that I don't have to be kept going via transfusions. The stem cells don't start to grow (engraft) for about 10 days so my doctor wanted to start immediately to minimize the time I'm open to infection. Sadly they haven't had someones counts drop at this point before so we are in uncharted territory. There is no guarantee the cells will work and if they don't there is a plan B and maybe a plan C, which start to get a bit unsavory around C so fingers crossed for plan A!
So, in goes a huge needle "this is going to hurt" - thanks Kristy! I guess stem cells are relatively large little buggers...and off to the hospital to nab the last room on unit 41, yes my old friend where I spent 12 days in December, where I felt the sickest I have ever. They even had me in the room next to my old one - I'd like to think it was for old times sake, but I was told it was actually the only open room. However it was nice to see the nurses who helped me through those days, it is a cool unit. Last time I had a transplant I had a central line which dumped any drugs or cells into my jugular vein near my heart. I didn't feel any sensation when they slowly infused 4x50ml syringes of ice cold cells. Well I felt it today! It was same as a brain freeze in my arm for about 30-40 minutes! Not a lot of fun, the problem is if the cells warm up the preservative they are in becomes toxic. They also gave me 50ml of benadryl IV before the cells which confined me to a laying position as I had no sense of balance.
So our 'good news I'm in remission day' ended up not as fun as I would have hoped. It also took a lot longer than anticipated - thank you Kathy for looking after our kids all day! 
I know I've said it before but I don't think I can say it enough, thank you family and friends for your help and support. This is a very difficult process made easier on me, Kristy, Sophie and James because of you.
Good news, okay creatinine is 2.1 and all my GI, food and drink issues seem to have dissappeared over the last week or so. Coffee, wine, beer and food is pretty much back to normal and I get hungry and thirsty again - which is nice. I'll be going to clinic everyday for a while to keep an eye on things and for daily neupogen shots. So I'll update if anything interesting happens.

Thursday March 31st 2011

Well I was hoping for better scores today. It looks like my bone marrow is still suppressed and not up to much. WBC is 0.6, platelets 6 and hemoglobin 7.1. I also woke up this morning with a slightly sore throat. So I'll be here at the clinic for 3-4 more hours to get blood and platelet transfusions and a neupogen shot. My Lymphocyte level is 88 which I'm told means there is still inflammation or a virus somewhere in my body.  I don't feel too bad, a little tired maybe but the counts are not what I wanted to hear. They didn't run the creatinine test today so no numbers there till next time. I've just been told they are doing another blood test because of the Lymphocyte number. Because of the sore throat they did swab my nose and throat when I arrived. So we shall see...

Tuesday March 29th

Today my counts didn't do much, wbc 1.0, platelets 14 and hemoglobin still 7.8. Creatinine sadly went up to 2.3, so no fine wines just yet. They gave me a neupogen shot today but nothing else.   A lymphocytes value means they think I have something - a virus, still active and causing some sort of inflammation.
Nothing I can tell other than generally feeling tired.
I go back for more blood tests Thursday and then the following Monday I meet with a doctor to review all my counts and decide whether I need another stem cell transplant/boost.

Sunday March 27th - Clinic visit

Well the last few days have been a concern, but today is more encouraging. So I got blood and Neupogen (a white blood cell booster) last Friday, then after I showered Saturday morning I found more bruising on my body, called up the BMT clinic and they suggested I come in for platelets which I did. I had blood tests at the clinic at 8.15 this morning because over the last week or so my counts have been dropping.
Well today the count news is better, it looks like they're holding their own and coming back up a little. WBC is up to 0.8 from 0.4, hemoglobin is 7.8 from 6.6 and platelets are 24 up from 12. Even with transfusions last week things were dropping so although the numbers now are bolstered by blood products and drugs - it is good news and I think I'm on the mend. Whatever made my counts drop (virus I'm guessing) is passing or being beaten into submission, which ever picture you prefer.
So Tuesdays blood test will tell us more. Myself I think the Guinness I had last night helped a lot (thanks George!).

Friday March 25th - BMT Clinic

Got tested today counts are still dropping for some reason. WBC is 0.4, hemoglobin is 6.6 and platelets are 12. So I'm getting more blood today, more platelets Sunday, I've just got another neupogen shot - so I think I'm set for a few days! Good news is that my creatinine is down to 2.01. When it goes below 2 I'm going 'out on the town' to drink the finest wines known to man!

Wednesday March 23rd

Well I went into the BMT clinic on Monday to have a blood test and drop off my 24hr urine for testing and left after about 10 minutes for a 'coffee on the Plaza' as I knew the results would be read and would be revealed at a doctors appt a week later. However...I was just about to sit down with magazines and a coffee when the clinic rang to say I needed to go back asap. My WBC, platelets and hemoglobin counts had dropped dramatically and they didn't know why and it was unusual for everything to drop at this point.
So I went back and had another blood test which confirmed the first test was correct and indeed my platelets had dropped from 119 to 6, WBC from 3.9 to .9 and hemoglobin from 8.0 to 6.3. So the first thing they did was to send me for a bone marrow biopsy (bringing it forward by a week or 2) to see if it was myeloma coming back, they were also able to test my marrow for a particular virus (Parvovirus). Then they gave me platelets because a value as low as 6 (which means I have 6000 platelets in my body...normal is 150000-400000) leaves me open to spontaneous bleeding. When I think about it I don't want to be so spontaneous when it comes to bleeding! As it is my arms look the worst they have because of bruising from needles and wrestling with James!
Today I got back the results of the bone marrow biopsy and another blood test. The good news is that my myeloma is in remission and that isn't the problem. Also the Parvovirus test was negative. The BMT docs have only ever seen this issue once before where at this stage a persons immune system drops and the bone marrow is not producing anything.
They gave me a blood transfusion as my hemoglobin was 6.3 and also a neupogen shot which I haven't had since being in the hospital. At this point it is hoped that the neupogen will boost my WBC count. They're waiting for one more test result which is a genetics test (not sure exactly what that will tell us). Following that I may be getting another stem cell transplant or as they put it a 'stem cell boost' which they hope would kick start my bone marrow - if it hasn't started working on its own.
I won't need chemo to suppress my bone marrow...as I seem to have managed that all on my own.
Another bummer is that I'm back in isolation as I have no immune system, so hopefully I don't catch any viruses in the near future!
That's all I know at the moment, another clinic visit on Friday will shed more light on things hopefully.