The Plan

I've been putting off writing this one for a long time, but Greg has been after me to get everyone on the same page. I was supposed to do it this weekend, but I found tons of excuses not to. It wasn't too hard, as I've come to believe that my laundry will NEVER be caught up -- just when I think it is, I turn around and there's 6 more loads. It was rainy & cold AGAIN this weekend, but I also got the grass cut. I know, you're thinking: "Sheesh! That what she's got a teenager for!" Unfortunately, Eric had 8 (!) lacrosse games this weekend, 4 in KC Saturday and 4 in Columbia Sunday. Huge thanks to the Altoonians for taking him (and feeding him!) all weekend. Oftentimes I don't know what I would do without such great friends. And, considering it rained in those places too, and games don't get called unless there's lightening, even with 6 loads of laundry I definitely got the better end of the deal. But, I digress (again!)

Greg is doing well. He's very tired (who isnt?) and he's getting something or other at the clinic or hospital almost every day now. Here's the scoop:

When we went to see Dr. Vij way back on April 3, he expressed his concern (echoing ours) that Greg has had way too many transfusions, hospitalizations and infections over the past several months. This was really no surprise. He said its time to proceed with the allogeneic transplant -- which we were hoping to put off for a while. The last biopsy showed really no change to his multiple myeloma, but the myelodisplastic syndrome is progressing faster than Vij would like.

Dr. Vij spent about 40 minutes scaring the you-know-what out of us, talking about the dangers, pitfalls and risks involved (I'm sure his lawyers made him do it!). Basically, Greg could come through this with flying colors, as he has done with the autologous transplants, or he could be in real trouble real fast. There is absolutely no way to tell.

The transplant will proceed at the beginning just like the others, with about a 3 week hospital stay. He will receive high dose chemotherapy and full body radiation to kill off every last cell of bone marrow he has (he didn't get the radiation with the others). Then, he'll receive the donor cells. (BTW, it will take about 2-3 months to get the donor lined up, mobilize his/her cells, collect, freeze and transport to St. Louis. They're working on that now). Assuming all goes well, he could be out of the hospital in about 3 weeks, but then must stay, as an outpatient in St. Louis, for 3 to 4 months (!). Complications can arise from the usual: infections and bleeing, and also from graft versus host disease (the new cells attack his body) or the reverse (his body attacks the new cells). He can have skin, liver, intestinal and a whole host of other problems. Or not. How's that for definite? But, as Greg sees it, he really doesn't have any choice. And that, believe it or not, actually makes this easier. We're not sitting here agonizing over what to do, what treatment option to pick, etc. This is the only one. At least he won't be left second guessing later on. Greg simply cannot go on the way he has been. Its too dangerous, not to mention his quality of life pretty much sucks.

In the meantime, Dr. Vij has started Greg on Velcade, a twice a week IV drug to try to limp him along until the transplant (Greg was part of a clinical trial on Velcade back in 2003). He's not too hopeful it will have much effect on the disease, but its worth a try. He gets that here in Springfield. However, the side effect of Velcade is that it lowers your counts -- you know, the ones he doesn't have to begin with. That's why he's getting red blood and plateletes several times a week. He's also trying to still work as close to full time as possible. Everyone in his office has been so supportive and caring -- he wouldn't be getting through this without all of them, too.

However, there is actually a small bright spot in all of this: because he's getting active "treatment" via the Velcade, he can get shots of Neupagin -- a drug designed to raise his white counts. State/insurance guidelines say he can only get the drug if he's getting treatment. So, his white count is actually up some (last week it was through the roof!), lowering significantly his risk for infection. Doesn't seem to make sense. The last five months he couldn't have the shot ($1,000 a pop -- less than the cost of an ambulance ride to St. Louis!), so the insurance company had to pay for four hospitalizations instead -- two of them out of state! Even I can do that math.

Another bright spot (not!) of the Velcade is that it comes with a high dose of steroid -- whick really messes up his blood sugar. So, he has to check that regularly, and is on insulin. And, another side effect of the steroids is being just a wee bit grumpy. Ok, unbearably grumpy sometimes. However, because of Greg's blood sugar issues, they've got him on the lowest possible dose, and that has not really been an issue so far. Here's hoping! We went through this in 2003 and I almost had to throw him out. He's planning to join the WWE if the steroids continue.

So, I think that's about everything. We go back in May to see Vij, and should get a better idea on timing. I'll post again then, and in between if anything exciting happens (but it better not!).

Thanks to all for the prayers. We need them now more than ever.

Love,

Greg, Ann & the Boys