Last Monday we met with our oncologist to find out if we'd be starting round 5 of chemo on Tuesday. Unfortunately, Tom's last marrow read came back still showing 5-10% leukemia cells. They set up a consultation for us with Dr. Carroll at Sutter General in Sacramento. Dr. Carroll seems to be a guy who knows what he's doing, said that there's no question that Tom needs a marrow transplant, etc. but that we need to first get him into remission, so he needs to try a different and stronger chemo regimen.
We were set up to begin this last Friday. We showed up with all of our bags in tow, looked like a family of gypsies ready to camp, only to find out that there were some insurance issues and we wouldn't be starting. The insurance company had come back saying that they did not cover anything to do with the transplant at that specific facility, he could get a transplant... just not at Sutter General. Didn't seem to make much sense as we'd so far received all of his care through the Sutter system (just a different hospital). We packed up, upset (to say the very least), confused, scared, angry... you name it... I felt it and I'm sure so did everyone else.
We had actually set up a "second opinion" with UCSF for Friday, but because we were not expecting to be scheduled to begin chemo in Sacramento on Friday and then were, we had to cancel it. I immediately called them back absolutely begging to get that appointment back. We told Dr. Carroll that since the insurance wasn't covering the transplant at Sutter, while Sutter worked to obtain authorization, we would seek a second opinion and then begin treatment on Monday at Sutter if they'd obtained authorization from insurance. When the lady at UCSF told me that the appointment for Friday was for a "second opinion" and if we were going to need to actually go to UCSF for this procedure, we would need a proper consultation with the attending physician and it'd have to be Monday... I was in tears begging her to squeeze us in that day. Eventually I understood where she was coming from and thought one more day wouldn't hurt and agreed to Monday.
UCSF, what a large place. Though it took a long time, we were seen and put at ease. The physician there told us that the regimen Tom had been on (Hyper CVAD) was delivered well by Dr. Colbourn (our original oncologist), he also said he puts his seal of approval on the regimen that Dr. Carroll had proposed. Told us there was absolutely no need to do the pre-transplant chemo at UCSF as
1. there are no beds available in the timely fashion Tom would need and
2. As a transplant facility, it'd seem that Sutter General is more than capable of delivering this chemo.
He did say that if this chemo doesn't get him into remission, consider it two strikes and come to UCSF. He also suggested that maybe we should have Sutter General deliver the chemo, but do the transplant portion at UCSF. We're leaning towards that latter plan (minus the fact that it requires a move to the very expensive, San Francsico). Though either way, requires a move to be closer to whichever hospital chosen.
Tom is currently on day 4/5 of this chemo regimen. As it's considered an "induction" phase due to it's level of strength... he will be in for 3-5 weeks while his counts and body recover and they keep watch over him in case of any secondary infections. In the meantime, his brothers will be typed for a match and if they aren't, they will try to find one on a registry. As the registry takes time, even if Tom hits full remission (fingers crossed) from this regimen, he will have to continue it to keep things from coming back, until they have a match ready to donate. The registry can sometimes take 2 months.
Until we decide where he wants to do the transplant, I will be travelling the 30-60 min (depending on traffic) journey to and from the hospital and attempting to pack our house up for whatever move we decide to make. My husband has been so brave during all of this, I can say I married someone worth looking up to.
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