All looking good - getting cocky now

I haven't blogged in a couple of weeks - largely because there hasn't been much extra to say. I continue to live my life in semi-isolation, but as I get stronger every day/week, I find myself getting more and more relaxed about going out in public. For the past few weeks I have been getting out daily to either walk the dog (I do 5k, she does 10k around me!) or to go for a jog (I'm up to 5 miles without stopping - happy about that). I have also been to the shops a few times - life's getting exciting now! I have made plans to run a 10k in June, go to an airshow in July, Ireland in August and back to work in September. However, I still avoid many places where I feel I have no control over who I meet and the potential for picking up something nasty.

I was at the docs for my fortnightly checkup on Wednesday and told them about my plans - their response was cautious. I suppose I shouldn't have been surprised as my immune system is still low and (I forgot about this) will remain low for up to two years. So, they are happy with my progress and how energetic I feel currently, but warned that it wouldn't take much for me to pick up an infection and end up back in hospital. Flying to Ireland is of particular concern because of all the bugs that can be picked up at an airport or on the plane (especially LHR - measles, for example. And I read this morning about an outbreak of measles in West Limerick too!), and what would I do if I got sick in Limerick (I'm sure there's a lovely trolley in a corridor of the Regional I can use!).

I am in compete agreement with the doctors and needed Wednesday's chat to ensure I don't get too complacent about how vulnerable I still am - in spite of how good I feel. I will continue with my plans, as long as I realise that all can be scuppered if I get sick. That's a chance I'm willing to take as I'm really not one for sitting around doing nothing - I want to live my life.

One reason I'm so positive about my recovery is all the results from the 100-day tests have come back negative. Other than a slightly enlarged spleen (which I still think is scar tissue), there is no evidence of Lymphoma and loads of evidence that my new bone marrow is working well. I am continuing to reduce the immuno-suppressant drugs with no sign of any Graft-Vs-Host so far.
Life is good.

The weaning begins

I agreed with the docs this week that I would start reducing the dose of immuno-suppressants that I take. This is good news for a couple of reasons :- the fewer drugs I take, the better as far as I'm concerned and this will allow my immune system to start working better and keep any lymphoma at bay. Assuming I get no major graft vs host issues, it'll take a couple of months to come of the suppressants completely. Once I'm off them, I will be able to stop taking another horrible drug that is preventing my blood levels from rising above half way (but it is protecting me from a nasty version of pneumonia, so I guess it's worth it). So, I'm on the way to becoming drug-free which is a great prospect (except for penicillin - I'll be on that for the rest of my life because the transplant does things to my spleen that it never recovers from).

I received more good news this week - the CT scan results came back and, with the exception of my slightly enlarged spleen, everything is completely normal. The spleen is no surprise because it was enlarged going into the transplant (apparently normal should be 13cm and mine is 16cm). It has not increased in size since and the enlargement could be scar tissue as a result of how stretched it was this time last year (doctors at the time called it a whopper :-)  ). It could also be lymphoma in there, but given the doses of chemo I have just been through, and the fact that the disease in all my other lymph nodes has completely cleared up, I'm inclined to think not.  Because I'm reducing my immuno-suppressants which will allow my immune system to strengthen, if there is lymphoma left in the spleen then it will be a good test to see if the new immune system eradicates it. In any case, we will be watching this closely over the coming months......