6.19.12   So This is a little sooner than I had planned....

Well lots has happened since my last post. I had hoped I would never continue this blog but here we are. I'll need to update the photos as we are all looking a little older - mostly the kids...

So a quickish update. In June last year I planned on 10 years of remission, so I set about making some changes. The kids were starting preschool and parents day out and therefore needing me less, so I decided it was time to even the score on people taking blood from me and signed up for a 6 month Phlebotomy course at Johnson County Community College. I did my clinical experience at Olathe Medical Center (OMC) and got a full time job there starting two days ago....which was all a great plan because I really enjoyed the class, enjoyed sticking needles in people, and got child care sorted...however the cancer was not playing ball. My doctors here, whom I trust completely, encouraged me to seek out other opinions for treatment options, so I went to see doctors in New York and Boston.  I tried to treat it with more chemo and that didn't seem to be working as my cancer markers went up despite doubling then quadrupling Velcade (although Velcade might be slowing down the progression). Revlimid stopped working, Thalidomide was too toxic to my liver, and the jury is out on Cytoxan so far. So anyway, none of these drugs would cure me and eventually they will all stop working. It is hard to quantify how long they would keep me alive but I was going through them quicker than I had hoped and felt I was being painted into a corner. 

So while my kidneys were still able to get me through a Matched Unrelated Donor (MUD) stem cell transplant we decided to go for it. My hesitation has always been the age of our kids (3.5 and 5.5), if I don't survive they would not remember me which is a sad thought...certainly not James, maybe Sophie would remember a little. Anyway, the 2 years I thought I could wait until transplant have disappeared and I found out last Friday that I will be having a T-cell depleted allogeneic stem cell transplant from a MUD on July 22 or 24th at Memorial Sloan Kettering in NYC, which means I will be staying in or around the hospital there for 4 months.  My doctor there will be Dr Koehne - it feels kind of weird to start receiving treatment from doctors other than the ones here...  So I called OMC and explained my situation to Rozenia, my intended manager, who was really great; calling Friday afternoon to say you're not starting your job on Monday is not fun for anyone. I got sooo close to being a phlebotomist! Well maybe in a year I'll be back knocking on doors looking for a job.

The risks are different from before, 20% die in the first 12 months, but 80% live 2 years or more and of them 20-25% are cured - which is of course what we are aiming for. MM is not something that could be 'cured' up until now as other peoples cells are not normally used. Certainly my first transplant was autologus (from myself), which is the conventional treatment for MM.

Okay so maybe not as short a catch up as I thought, but all that said... I feel fit and up for the next battle.

I'm a realist though, and I know how hard a fight this is going to be. 
Not a lot else to say right now but I'll be updating and posting photos as we go forward.