Welcome back, I hope everyone had a wonderful 4th, filled with family, friends, fireworks and food. Let’s get right to it, shall we?
Today was my follow up in-clinic visit to Dr. Roboz. We got my blood drawn, numbers done up, and then we talked about the initial results of my donor search (still haven’t made a decision about yes/no to stem cell, but the idea is that we have everything in line so if we do go that route, we don’t then have to wait weeks/months to get everything together to have it done).
First, the good news:
Blood is all trending in the right direction. My hemoglobin is all the way up to 10 (normal for someone like me is 16-18), which is higher than it’s been since…I’d say early to mid April of this year (which is around when I first started to notice the signs of what turned out to be anemia). My platelets are up to 66,000 (normal is 140k-400k). White blood cells up to 3.7, which seems a little slow, but neutrophils were up to over 1.0, so, the best news yet?
Off the neutropenic diet! I have a reservation tonight at Minetta Tavern (http://minettatavernny.com/) and I have a $26 Black Label burger in my very near future. Pretty pumped about that one.
UPDATE: The burger was awesome.
I’m now allowed to be out and about, although if I plan on being in the sun, I have to treat myself like a ginger, and lather up with SPF1,000,000,000.
I’m also cleared for physical activity, though with the caveat of “as tolerated”. So basically, I can do whatever, but I need to not push myself. A direct quote from Dr. Roboz was “nothing traithon-y”. That’s fine, I can handle that. Hopping on my road bike tomorrow morning, and gonna ride and catch up on some more American Ninja Warrior (finals are on this Sunday night on G4 – best show on television, definitely).
All this stuff is pretty rocktacular.
The not so great news:
I had discussed this with one of the guys on the transplant team, so I kind of already knew this, but it looks like I don’t have any matches in the living adult donor registry. That’s kind of a bummer. If I do end up needing stem cell, the preference is Sibling (my sister is unfortunately not a match), Un-Related Living Adult, then umbilical cord blood. They said that I have 3 potential matches, but that they have a feeling they’re not a match. They asked for follow up screening, but aren’t particularly hopeful that any of them would be a match.
I’m in the process of writing a big long post about the stem cell registry, donation, and all those things soon. If you want to know if you can help in any way, it’ll be in that post.
The ok fine news:
The consolation prize is that I did end up having a match with 3 different umbilical cord donors. Luckily one of the top transplanters in the country (with regards to stem cell / bone marrow from an umbilical cord) works right across the street from NY Presbyterian. I was told she has purple hair, and that I’d have to get over that. On the contrary, I think that’s a good sign. My good friend Numi has purple hair (or at least had it when she shaved my mohawk for me….she changes colors), and so I see it as a sign that everything is lining up to be good.
The expected but unpleasant news:
Additional bone marrow biopsy to be done next week, and first round of consolidation chemo starts on July 19th. That one I stay in the hospital for just 5 days, then I’m home until I have a fever. Once I get a fever, I get admitted back to the hospital until my numbers recover. So at least I get a break.
After that round of chemo, that’s decision time to either do 3 additional rounds of consolidation chemo (post about this process in the works), or to go straight to stem cell transplant after a round of conditioning chemo.
Well, thems the breaks. Luckily, I have 2 weeks to kind of do whatever I want. I’ll be helping out at work when, where, and how I can, and hopefully be able to visit all the wonderful folk who have stopped by to see me, or messaged me to wish me well. Again, thanks for the support. I’ll keep on keepin’ on.
Long road ahead, but at least chapter 1 is in the books. All I know is, if I need the additional chemo rounds, I pity the doctor that has me for the last set. If it runs into snowboarding season, they are in BIG trouble.
I’m only partially kidding.