Monday May 9th - Clinic visit

All is going well at the moment. All my counts are doing well - wbc 5.2, hemoglobin 9.0, platelets 256 and creatinine 2.01. Now, the creatinine was affected slightly because I'm a little dehydrated. I've been hydrating when I workout but cutting the lawn in the heat required more fluid intake than I thought.
So all together things are going well and I'm feeling good. I spend an hour on the bike everyday and hopefully will soon venture out. Having enough energy to do normal stuff is great, I guess looking back I didn't really realize the full extent to my fatigue because it was so gradual from more than a year ago.

Tuesday May 3rd - Blood work at the lab.

I'm not a pill taker but...

Before August 2010 I really hardly ever took pills. If I had a headache there was a reason so why mask it with a pill, drink more water or spend less time in front of the computer. So I'm not a great pill taker, but I have had some practice of late. These are all the bottles of pills & potions I haven't finished. Anti nausea, blood pressure, chemo, vitamins, anti-viral, anti-biotic, anti-pain, fiber, "magic mouth wash" and of course hand sanitizer - all the time. I still don't like taking pills and if I'm given the option I normally keep the pill 'just in case'.
So anyway, all that said I have good news. I have been riding my bike! Mostly on the trainer but I have been on it about a hour a day 6 days a week. I keep my HR at 85% of max. and I think I can see improvement. Mostly cardio, my resting HR is coming down and I'm able to increase resistance on the trainer. I'm also starting back with some light weights. I went for a 30 minute ride on my mountain bike last Tuesday and really enjoyed it. It was hard and my muscles feel very heavy and useless but hopefully I can change that. I did have to get off my bike on the way back - even on my lowest gear, but the hill on 79th Street kicks up to 13% just before the top and there was no way I could keep going, having got off the bike I could hardly walk up it! But working out again feels great and I almost feel normal again, which has been a long time coming. I'm tired and will continue to be for a few weeks while I get used to regular exercise again but even in a week my baseline has got so much better and running up stairs no longer makes me blackout and while carrying James around during the day I'm now not always looking for the nearest chair to sit on, so something is working.
I had labs drawn today (Tuesday) and wbc is 2.6, hemoglobin 7.6, anc 1.49, platelets 236 and creatinine 1.70. I've been told level will fluctuate a little initially but all the numbers are okay and platelets are doing great but my creatinine is out performing my best guess at the moment! A drop of 0.12 in a week is amazing, I had conceded to it staying at 2 but I'll take 1.7 or anything better I can get. I'm down to one visit a week now and all going well will be once every 2 soon. I'm just hoping that all my numbers get a little better then stabilize. So hopefully before long I'll be out on my road bike hitting some hills!

Monday April 25th - Clinic visit

Good news today, all my counts are doing well. Wbc 3.1 up from 2.7, platelets 126 up from about 40, hemoglobin 7.9 up from 7.7 and creatinine is now 1.82! Also anc is 1.74.
Dr McGuirk said the boost had worked fantastically and that it had been the adenovirus that had knocked out my bone marrow. For that to happen again would be very very unusual and he said in 20 years he'd never seen it happen a second time. The only real way it could happen is if they had missed something and there was another reason for the bone marrow suppression. So I'm hoping that is not the case. We are going to ask another chap called Paul Richardson for a second opinion/further ideas on keeping me in remission for a long time. Dr McGuirk encouraged this and rates Richardson as the best in the country for MM. He's in Boston so it looks like we're going on a mini trip to Boston at some stage. He encouraged me to workout taking it easy at first, so I'll take him at his word. He said he has seen people acclimatize to a low hemoglobin level and still run distance/workout. So I'm hopeful I can get back some decent level of fitness on my bike, running depends on my back and I'll just see how that goes.

Saturday April 16th - BMT Clinic

Good news today, all my counts are going in the right direction! I think we can say that the stem cell boost is working!  WBC 2.5, hemoglobin 8.2 and platelets 16. My creatinine is 1.92, I can't remember the last time it was in the 1 point somethings! So hopefully in 3-4 days I'll be back in the 'normal' ranges and not need anymore transfusions for a while. My ANC needs to be 1500 before they stop daily neupogen shots and it's up to 900 so back in tomorrow for one of those and then blood test on Monday which I hope to 'pass' with climbing numbers!

Wednesday April 13th 2011 (8 months since diagnosis).

I have hip ache/pain! Hopefully this means there is some movement of stem cells and engraftment is just around the corner. Over the last few visits my counts have slowed their decline and I've needed less transfusions. I got platelets yesterday but my hemoglobin has risen to 7.9 which is the highest it has been for a while and that is without extra blood transfusions. Because my wbc is low I have managed to pick up viral and fugal infections but hope they will be beaten into submission by a rising wbc and drugs.

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.