Friday June 24th 2011

I went in to the clinic on Tuesday to have a strep test and a cbc (basic blood test), the reason being I have a sore throat which is a little concerning. Strep was negative and counts were good: Hemoglobin 11.7 Platelets 195 and WBC 5.4. So it looks like a simple cough/cold/sore throat. I also moved my 180 follow up meeting to next week.

6 Months Checkup - June 7th 2011.

James & I on a family outing to see Thomas.

I had my 180 day check up at the BMT clinic at the Westwood campus.  I was able to do everything there without going up to the main KU hospital which was great. First job of the day drop off my 24hr urine bottles (yes I'm a 2 bottle man). Then down to X-ray for 40 minutes or so for a full skeletal survey. Then blood work at the Lab. By this time I was so ahead of my schedule we went to the coffee shop to kill some time and some oatmeal raisin cookies! The 'we' today is my Dad and I, he is visiting from Ireland at the moment. It was nice to show him where I've been spending my time over the last while. While we were waiting around with our coffees I got the results of the X-rays (pretty fast!) and nothing has changed since my 3 months check which is the news I was hoping for. Also blood work showed: Hemoglobin 11.4, WBC 4.3, Platelets 186 and Creatinine 1.73, all great news. The wbc is a little low but nothing to be too concerned about at the moment as all the other numbers are good. Numbers will fluctuate a little, and as long as all the numbers aren't going down it is just the natural ebb and flow of my body recuperating.
Next was the bone marrow biopsy which was fine, it's my 4th I think and in case anyone has to have one (and I hope you never do) they do not hurt that much. I had heard stories of pain and suffering on a grand scale and in all four cases this did not happen. I've had more painful dental work.
The results from the 24hr Urine and the biopsy will trickle in over the next week and I will get the official results on June 21st when I meet with a doc to discuss the full results.
One more encouraging result I got today was that in one of the blood tests my kappa light chains (cancer marker) were in the normal range for the first time which is amazing! To give you an idea of how things have changed when I was diagnosed my 'score' was 397.5, at 100 days post transplant I was 2.7 and now I'm 1.5 and to be in the 'normal' range you have to be under 1.9. So as I said amazing news and interesting that there has been an improvement from 100 to 180 days.
Generally I am feeling tired, I'm pretty sure the weather/heat has a lot to do with this. I'm still able to workout, but not as hard as I would like. But given some patience I'll get there.

Tuesday May 31st 2011.

Things have been quiet around here, partly because of a bug on blogspot didn't allow me to login. So anyway, my next appointment isn't for another 8 days or so. It's my 180 days (6 months since transplant) check. Which means lots of tests, well lots of x-rays and blood and urine tests plus a bone marrow biopsy. At my last check on May 23rd all was fine. I started the ball rolling for my second opinion trip to Boston, hopefully we can organize it for the beginning of September. All my counts were fine, platelets were 160 which is getting to the lower edge of normal but as this was the only number on the low side my N/P thought it was probably because of one of my drugs if been on since transplant, they have a tendency to suppress platelets. Happily after 6 months post transplant I can stop them. Soon I'll be on hardly any drugs until maybe they decide to put me on a low dose chemo drug, my old friend Revlimid. My hemoglobin was 9.8 which is still great. I can't remember the others so they must have been fine. I also had my last Pentamidine treatment. Still working out on the bike and the numbers are still getting better. Up to an Av of 16.44/hr on the trainer. Still slow but getting better. Resting HR down from 100 to 68...so far.

Fun in the Pentamidine tent!

Wednesday May 18th - BMT Clinic

They say working out cannot help your hemoglobin level, well maybe they'll find a link at some stage because mine is going through the roof! Well not the roof...it is still not even normal but at 10.1 it is at least in the same neighbourhood as normal (13.5 - 16.5). I think it had been dancing around 7 point something for over 6 months, then when I get back to an hour on the bike a day it only takes 3 weeks to get to 10.1! Whatever the reason I'm happy. Other numbers WBC 4.7, Platelets 198, ANC 2.87 all are a little bit down but still in the normal range so nothing to worry about. Blood Urea Nitrogen (BUN) is showing I'm a little dehydrated still - which is amazing as I'm consciously trying to drink more. That being taken in to account my Creatinine at 1.82 is pretty good I think. I'm hoping if I manage to drink enough it will show below 1.7!
So that is all the boring, hard to understand medical stuff. I weirdly enough understand most of it now and pay close attention to my labs.  And what the numbers are telling me my body has already let me know, I feel great and I'm getting stronger. On Sunday I dusted down my outdoor wheels, put them on my road bike, put on all my cold weather gear (it was cold and windy out) and rode out to Shawnee Mission Park. It is a hilly ride and not that much fun given my current level of fitness but I wanted to get out and back without getting off my bike on the hills. I also wanted to gather information on my Garmin to compare back and forward to plot my progression. Well I made it there and back without putting my feet on the ground. My average speed was...unprintable but I was pleasantly surprised I didn't feel worse. I'll be training on longer flatter rides for a while I  think. On the trainer in the basement I do an hour with 1 minute standing intervals every 10 minutes and that is feeling better. My distance is increasing (in an hour ride) from 13.4 to 15.27 miles, still a long way to go though.
I am starting to look at setting some goals on the bike which is great. For a while there the goal was to get on it again and now I can imagine it will be a bit more, although I've not figured out what my new goals are yet.
It feels like I can start to resume my life now, well a more normal 'my life'.

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.