Saturday Musings

Or "what a way to wake up!"  

First off, I opened my eyes to the soft glow of dawn, when the world is still gray and a little too cold, but the horizon blushes in tangerine and pink.  Upon checking my flist, I find love poetry that just.  It was a gentle awakening and well appreciated.

We packed up, DH, the girl & I to take DH for his latest transfusion.  A quick stop at Panera for the obligatory cinnamon roll and hazelnut coffee (for him) and other yummy treats for us girls.  The check-in at the hospital (at 0815) went more smoothly than usual, and we kissed him good bye in his room, in plenty of time to get Mavis to practice.  I learned later that our early arrival and pre-typing and crossing were all for naught, as he didn't receive the first of 3 until nearly 11:00. ARGGH.

However, after dropping the girl, I headed for the grocery.  Not too early, but not too late.  On the way, I nearly bypassed Brennan's but realized I hadn't been there for awhile, so I thought I might find some inspiration.  Lots of samples of citrus, but nothing really drew me.  As I was contemplating leaving and a new bottle of wine simultaneously, the wine guy offered me a sample of just what I was looking at.  Honestly, some days I believe I have a sign above me that says "Offer me alcohol.  It doesn't matter what time it is."  So I came to be sipping a lush Malbec at 0930 and having a lovely chat about Chilean wines.  I purchased said Secreto Malbec, and its sibling, Secreto Syrah, each being $9.99 from Viu Manent out of Colchagua, Chile.  They are ~85% the varietal they're named for, and 15% something "secret."  Catalina Abbott created the Picasso-themed artwork for the labels.

But really, there aren't many better ways to start the day than dawn, Neruda and Malbec.  And to think I didn't know that before today...

DH Update

I'm not sure I'm in denial, per se.  I've been feeling pretty blank the past 3 days. If I've been working my way through those pesky stages, it certainly hasn't been in order.  I don't believe I've hit angry yet, but grief showed up back in Jan.  Bargaining doesn't seem to be on the radar either.  There was a moment, yesterday, when DH said, "shoot" or some such, while we were at the Dr.'s office, that I could feel the tears coming on, but then he did the funniest thing to the nurse, and had all 3 of us gasping and laughing, and that moment passed.

Wednesday, we had the consult with the bone marrow transplant specialist.  I thought we were going to learn if DH is a good candidate for the transplant, or if it is even an appropriate prescription for his situation.  What we actually learned was this form of MDS with the 7th & 8th chromosomes being affected, will eventually turn into leukemia.  Not "possibly" or "probably."  WILL.  Also, on the way there, the need for transfusions will come closer and closer together.  The growth hormones (Darbopoetin and Nupagen) might help keep the transfusions at maximum intervals, but they'll not prevent this outcome.  A bone marrow transplant is not something that might be a good idea, it is the only idea.  There is nothing else at this time that could possibly work.  So, no point in waiting around to see how the maintenance therapies work, Dr. Longo wants to start looking for a donor ASAP.  He would have begun on Wed. if our stupid insurance situation had been resolved.  We're really only days away from that, but it's frustrating still.

Bone Marrow Transplant.  Huh.  There's a 30% mortality rate just from the procedure, and graft vs. host disease.  If you're in the 70% that survives, there's a 20% chance that the MDS will return.  If it returns, well then, it sounds like you're going to be S.O.L.  How do I factor these together?  Does that mean there's only a 50-50 chance that this extremely dangerous and expensive procedure will work (30+20)?  Or is it more like 75% ((70+80)/2)?  I'd prefer thinking the latter, really.  But I fear the former.

Let's see - anywhere from 8-12 mos just to find the donor (and I'm going to assume one will be found), an extended hospital stay where they kill your own immune system, leaving you vulnerable to ANY DAMN THING that could wander by (yeah, yeah, I know there are precautions), and then another good 12 months recovering.  Because your new marrow has to grow, and then it has to produce, and what it produces has to be healthy and plentiful.  And then, check ups twice a year to make sure it stays working.  It's a damn long row to hoe.

Then yesterday's numbers were so pathetic that it was off for another big transfusion today.  Everything slipped.  Hemoglobin wasn't too bad at 9, but platelets in the single digits!! (9 also) and white blood cells back down to 2.0.  Dr. Hei decided that after only 2 weeks of the growth hormones, he's doubling the Nupagen to twice a week.  Those results were really disheartening to all of us.  With the neutraphile (sp) at 500, we're only halfway to emerging from the bubble-life.  It just doesn't seem fair.  OTOH, everyone at our house has been amazingly healthy this winter, so all the handwashing and cleaning and quarantine must be working.  But it seems so sad to me that the 15-20 minutes I spend on a barstool waiting for our Friday night "dinner out" to be ready, or the 20 min chatting with the wine or beer guys are pretty much my social life now.  I'm somewhat of an introvert, but this is a bit much, even for me.  It's at least an order of magnitude worse for DH.  HE's the extrovert in the family.  All I can say is, if he hits 1000, I'm calling all y'all to come right over and celebrate.  It might only last a day, so don't be late.

Looking forward, the timing looks really sucky for the con too.  September could be either the time he's getting transplanted, or it could be that he's so neutropenic, that even attending would be impossible.  It's all up in the air right now, and I just wish I could see that far ahead, you know?  I'm afraid the most realistic thing to do is bow out of the con, but I don't know who would be able to pick it up right now.  I'm afraid if I let go of it, it will just be gone.  That would make me sad.  A lot more sad than knowing all my poly friends were together again, but not attending myself.

Well, I'm off to the hospital to collect up DH.  Maybe we'll have a wine tasting tonight with the new finds.