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.

Saturday March 19 - Day +100!

Hello hair!

100 days since my transplant...wow! It has been a long time coming and when I remember back...well maybe it's best to look forward. I am trying to remember where I thought I'd be at Day 100 and it is hard to recall. I think I am about where I thought I'd be fitness-wise but there are a few issues still hanging around that I didn't think would be...

I thought I'd be able to open the fridge and want to eat everything like I used to but for some reason food still doesn't seem appetizing. My taste for most things is back to normal or near to normal but for some reason I forget to eat and there is still an element of forcing myself to eat because I know I need to eat...every single day! This maybe because of my 'small intestine neuropathy', but to tell you the truth I'm not sure.

My heartrate is still high and that for sure I thought would be back to normal-ish by now. Sadly my resting HR is 92 and although I've been on my bike in the basement for up to an hour my HR is between 150-160 and I'm not going very fast...at all. This is because my hemoglobin was 8.0 last time I checked and it should be 15, so there is a lot less oxygen flying around my body, hence the HR trying to make up the difference! This may come back on it's own or I may need to take some more drugs to encourage a more normal level.

Speaking of drugs I'm still on an antiviral and an antibiotic so I don't get something nasty while my immune system is not 100%, plus some other bits and pieces (multivitamin, folic acid, blood pressure med, etc). These I believe I need to keep taking for another 80 days. They seem to make me feel a little crappy but I've been taking them for so long now I'm not sure what normal feels like.

So to recap, I feel better all the time (in small increments), I have a ton of hair on my head (I never lost eyebrows) and my beard grows quicker than before...which is a surprise. All in all I can't complain and hopefully one of these days the small issues I have now will get sorted.

Thursday March 3rd - BMT Clinic visit

So, I got back the RSV test results and I was negative. Kristy and I made the decision for me to stay at home (so I could get some painting done around the house) and Kristy and the kids to move to her parents. So I have been here on my lonesome all week. However I have got lots done. I do have a cough/cold but not RSV instead I have adenovirus. My family will be reunited on Saturday 10 days after James' illness, I'm looking forward to it!
Today went fine Carlos stuck me for my blood test, he got me first time of course, he's great. My levels are still improving, slowly. Hemoglobin is 8.0 up from 7.9, no need for EPO, they are happy to see it progress on its own. Although I was slightly dehydrated (whoops) my creatinine is still coming down 2.15 from 2.19. Platelets and WBC have both dropped a bit probably due to my cough/cold.
My cancer marker from the blood test last week shows as 2.7. This is considered remission as a normal persons number is 1.9. When I was first diagnosed my number was 398 and just before my high dose chemo (Melphlan) it was 8. So in a couple of weeks (around 100 days after transplant) I have further tests which will include a bone marrow biopsy which hopefully will be as positive.
My nausea is getting better, I'm still not eating and drinking normally but I'm getting there and one day soon it will disappear....