Fan Girl Wannabe

This week is already sucking beyond the telling. And most of the telling is way TMI. Suffice to say, DH has been back to the urology clinic 2 days in a row due to complications, and now he's attempting to fall asleep in bed with a new catheter/bag setup that is supposed to stay in until Monday (6 days). When he came home from the initial surgery, he only tolerated that one for 3.5 days. He's already so uncomfortable (for reasons) that I can't imagine this going well.

Also, he's got 2 new meds, and a proposed treatment plan for a 6-wk course of chemo that he can't undertake until he is fully healed from the previous surgery, and at least 3 follow up appointments next week.

In other news, the boy is attempting to buy a new-to-him car. He needs a co-signer of course, which, I guess I'm okay with, seeing as we co-signed for the girl's school loan.

And one truly good thing:
The girl had her 20 week ultrasound last week, and ta-da! Grandbaby is a boy! He's already tall, thanks to daddy, and everything looks good.

 Shiny new year, shiny new drama.  Can it be 2014 now?

The DH, he is not better.  In fact, multiple side effects, slow healing, rapid weight loss (due to limited liquid diet), and lack of sleep have conspired to wear him to a nub.  I'm still a knob, but I'm sure I'll lose the K by morning.

The girl, her luck is atrocious.  Shiny "new" dream car, turns out to be a lemon.  Stranded on the road 3 times since it was purchased Jan 9.  Same problem all 3 times.  Mechanic is completely stumped.  Also, the engagement, it is over.  She's returning the ring tonight. (I'm not actually surprised, and had to resist mightily telling the guy that if someone's heart was to be broken, it would be *his* back when he was announcing his intentions. I'd feel bad for him if he wasn't a card-carrying, gun-totin' Republican. What was he *thinking*?! It's as bad as when Dharma met Greg.)

I cannot focus enough on work, but am v. v. thankful that no one has called me on it yet.  I need to call my sister and find out the details about her latest drama (she suddenly has "custody" of her ex-husband's *mother*, who has Alzheimer's and has been demonstrably neglected by her only son since she became a widow) but I don't have the spoons for it.

The boy, well, he got a job finally, and is liking it, and is optimistic about moving forward (so is the girl), but his pig-headed husky puppy ran away tonight.

If anyone feels compelled to write a song about my life right now, I will probably learn voodoo just to get even.

Weekend update:
DH went into the hospital for surgery at noonish on Friday.  Surgery at 2:30, surgeon consult afterward at 5:00.  He was pleased, thinks he removed everything, pathology needs to confirm.  If the report is clean, no radiation needed (YAY).  7:30 he's up in his room, and going on toward 12 I finally went home.  I'll keep all the TMI details to myself, but sheesh, hospitals are really not designed for preserving dignity. Thank goodness for private rooms with doors.

Saturday morning - took the girl, her maid of honor/best friend/foster sister, and a friend of mine to the Bridal Show.  It was our first.  Fun and interesting for me, fashion show was a little "meh" except for the end when one of the male models leapt off the stage to propose to his girlfriend.  He was in a tux with a red waistcoat, she was in jeans and a t-shirt.  I bet she's mad at him now that she's over the shock.  Then we went for a sushi lunch. Yum.

Saturday afternoon headed to hospital again, and stayed til 11ish.  DH had a weird reaction to the hypertension med, that none of the staff deemed was a reaction.  He refused to take it after that.  He doesn't normally have high blood pressure.  Doesn't it seem reasonable that coming into the hospital for surgery, not eating since Thursday night, being poked and prodded and cut on, not knowing if the cancer is completely gone would all cause enough stress to raise his bp a bit?  It would go right back down every time he got a decent amount of sleep or a dose of his anti-anxiety med.  No food (feeding tube) for him on Sat even though they started talking about it at 9 in the morning.  He's lactose intolerant.  They kept wanting to give him Ensure, which he's had reaction to in the past.  We'd been warning them about this issue (hospital only stocks Ensure) since the original surgical consult.  Did they do anything to prep for it? NO.

Sunday: back to the hospital at 10 for another 12-hr day.  Found out that the last pain med he'd requested was on Sat morning.  Weird.  Since the bone marrow transplant, he's been extremely pain-intolerant.  Downright wimpy.  So if he says he's not having pain, he's really not having pain.  Everyone was very surprised because this is supposed to be a really difficult operation to recover from (for adults).  This morning we can see why.  He's finally able to open his mouth wide enough to look in there.  Looks like something the size of a tennis ball was removed!  Anyway, two more consults with the nutritionist finally produced one can of lactose-free protein drink for the feeding tube.  It went fine.  Then an observant night nurse came up with a cooled cup of coffee to dissolve his daily meds in, and administered that through the tube.  Goodbye, headache!

Monday: Took the girl to work, retrieved my laptop from the office - I have to reload a bunch of stuff to get it back to where I like it, lunch, and back to hospital at 12.  Where they informed me we could leave "in about an hour."  Wow! Way to go on the healing, DH!  Except at 4:00 the pharmacy still hadn't figured out how to fill the special liquid version of his immunosuppressant.  So we came home and he skipped a dose.  He's actually mostly taking care of himself, just asking for minimal support ("can you hand me that blanket?" etc).  It's the most independent he's ever been after a hospital stay, so I'm encouraged.  I finally went to bed at a reasonable time.

Today - gotta take the girl to work in a few - we still don't know when she'll get her car back from the shop.

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.