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.
Friday, November 9, 2012
Wednesday, November 7, 2012
Queen's Guest House
The sound of heels walking on the wooden floor of the hallway outside, echo in a way that make our guestroom sound as if it were empty. I roll over, but the sun comes in from the window, reminding me that it's morning. There's a desk against the window, with an electric kettle, various teas, instant coffee packs, sugars, and creamers. Being a Starbucks barista, I instead grab some VIA out of the suitcase. A fresh cup of Colombia will do.
Wish we could have done more in Edinburgh; Though, I had a good walk around Princes street, we checked out the park, the church, got some postcards, and did some window shopping. Oh, and how can I forget, the most amazing pizza I have ever had?! A margherita pizza at La Rusticana. On our way out of Edinburgh, we managed a drive down the Royal Mile and caught a peep of the setting up of Princess Zara's wedding.
Afraid Tom may have food poisoning, it's amazing that we made it up to Edinburgh from Newcastle, but we didn't want to lose the money we'd put toward the reservation. This place is very nice, I wish we had a bathroom so lovely in our place. Perhaps the best bit is the basket next to the kettle, full of delicious Walker's Shortbread cookies! Well, if not that, it must be the tons of humbugs I can't stop eating. Edinburgh is absolutely lovely, really hope we can visit again someday.
This is the memory that came to mind tonight; as I sipped on my accidentally made caramel brulee (dessert of choice on our honeymoon) latte, and ate some Walker's Shortbread Cookies that I purchased at Starbucks. What I'd give to go back to that trip (aside from Tom not feeling well that trip, of course)...
Wish we could have done more in Edinburgh; Though, I had a good walk around Princes street, we checked out the park, the church, got some postcards, and did some window shopping. Oh, and how can I forget, the most amazing pizza I have ever had?! A margherita pizza at La Rusticana. On our way out of Edinburgh, we managed a drive down the Royal Mile and caught a peep of the setting up of Princess Zara's wedding.
Afraid Tom may have food poisoning, it's amazing that we made it up to Edinburgh from Newcastle, but we didn't want to lose the money we'd put toward the reservation. This place is very nice, I wish we had a bathroom so lovely in our place. Perhaps the best bit is the basket next to the kettle, full of delicious Walker's Shortbread cookies! Well, if not that, it must be the tons of humbugs I can't stop eating. Edinburgh is absolutely lovely, really hope we can visit again someday.
This is the memory that came to mind tonight; as I sipped on my accidentally made caramel brulee (dessert of choice on our honeymoon) latte, and ate some Walker's Shortbread Cookies that I purchased at Starbucks. What I'd give to go back to that trip (aside from Tom not feeling well that trip, of course)...
Wednesday, October 31, 2012
Emotional Ranting?
Last week my husband had a variety of tests run because of him going sepsis. One of the tests had nothing to do with that though, his bone marrow biopsy was scheduled to check the status of his cancer. In late September Tom had an aspiration (where they just take a sample of marrow, as opposed to a biopsy that's marrow and a piece of bone), it came back with a read of 10-15% residual leukemia cells down from 90%.
Ordinarily, someone would say Great News! but this is actually rather not good news, as after the first two rounds of chemo (what the called the induction phase), they expected this read to say 0 and him be in full remission.
Nonetheless, they said that while it doesn't happen very often, it can happen. Tom's a really big guy and when they calculate the amount of chemo to give him, they can't actually give him that amount. In fact, they don't even give him the full amount that they technically can because he's been so wiped out before on less than that, with the e. coli infection in the blood stream. Anyway, so because it can yield such results and not have too many red flags, they thought they'd give him another two rounds assuming it might just take a little extra. He did the two additional rounds and it would only make sense that if the first two took it from 90-10%, that another two rounds could wipe out that last 10-15%, right?
Our oncologist returned from vacation on Monday and we went in to get the results and see what was happening because this VRE infection he got last week was likely to put off his scheduled chemotherapy round 5 for Tuesday. As it turns out, there is still a read of 5-10% leukemia cells in the marrow. A decline, yes, but certainly no victory. He should absolutely be in remission by now from the chemo. It's not doing what it needs to and at a certain point it begins to harm the marrow. The oncologist said that with such a results and the chemo not being able to achieve remission (because at this point the chemo should only be acting as an agent to keep it at bay, not still be battling it into remission), that if we took just the chemotherapy route, chance of leukemia returning is much higher!
This means that he has to get a bone marrow transplant. It has to happen quickly as we don't want the leukemia to start spreading again. He's scheduled to start an extremely intense pre-transplant chemo on Monday. We have a consultation with the doctor who will do the transplant, today. We were really hoping to get in with UCSF for a second opinion, but as we only had five days to do it and our oncologist's medical assistant didn't send off his records until late yesterday, I doubt it will happen, but we're crossing our fingers.
I'm feeling a lot better now, but Monday was beyond tough. My husband told me that if this was the verdict on the marrow, that it would be the end of him. All through this journey we've been told, "You're young! You're healthy! You're active! We caught it really early! ... All of the odds are on your side because of these things, this will be easy, textbook, cookie cutter perfect...." And yet, here we are. So when the oncologist told us that with the bone marrow transplant that The odds are on his side and that someone like you who's active will bounce back much faster it's almost hard to jump on the positive train along with him. When we got to the stairs to leave, I absolutely fell apart. I had been saying repeatedly for two weeks that Of COURSE the marrow would come back clear, Thomas don't be so stupid! How could it NOT tackle that last 10-15%?!?!?! I felt like SUCH a jackass!
Anyway, I guess we'll know more today after talking to the guy who's done so many of these. From what the oncologist explained to us, it seems that my daunting ideas of bone marrow transplants isn't really the case these days. Just felt like I should share an update on how terrible things seem to be going. On the bright side, going to do this now, means that he will be sort of out of the clear from the marrow transplant around the same time that he would have finished the consolidation phase of chemo... and with the transplant there is no maintenance chemo, saving 18 months on treatment time. So hopefully for once everything does go according to plan and he does well and we can get back to our lives sooner than expected.
Over and Out.
Ordinarily, someone would say Great News! but this is actually rather not good news, as after the first two rounds of chemo (what the called the induction phase), they expected this read to say 0 and him be in full remission.
Nonetheless, they said that while it doesn't happen very often, it can happen. Tom's a really big guy and when they calculate the amount of chemo to give him, they can't actually give him that amount. In fact, they don't even give him the full amount that they technically can because he's been so wiped out before on less than that, with the e. coli infection in the blood stream. Anyway, so because it can yield such results and not have too many red flags, they thought they'd give him another two rounds assuming it might just take a little extra. He did the two additional rounds and it would only make sense that if the first two took it from 90-10%, that another two rounds could wipe out that last 10-15%, right?
Our oncologist returned from vacation on Monday and we went in to get the results and see what was happening because this VRE infection he got last week was likely to put off his scheduled chemotherapy round 5 for Tuesday. As it turns out, there is still a read of 5-10% leukemia cells in the marrow. A decline, yes, but certainly no victory. He should absolutely be in remission by now from the chemo. It's not doing what it needs to and at a certain point it begins to harm the marrow. The oncologist said that with such a results and the chemo not being able to achieve remission (because at this point the chemo should only be acting as an agent to keep it at bay, not still be battling it into remission), that if we took just the chemotherapy route, chance of leukemia returning is much higher!
This means that he has to get a bone marrow transplant. It has to happen quickly as we don't want the leukemia to start spreading again. He's scheduled to start an extremely intense pre-transplant chemo on Monday. We have a consultation with the doctor who will do the transplant, today. We were really hoping to get in with UCSF for a second opinion, but as we only had five days to do it and our oncologist's medical assistant didn't send off his records until late yesterday, I doubt it will happen, but we're crossing our fingers.
I'm feeling a lot better now, but Monday was beyond tough. My husband told me that if this was the verdict on the marrow, that it would be the end of him. All through this journey we've been told, "You're young! You're healthy! You're active! We caught it really early! ... All of the odds are on your side because of these things, this will be easy, textbook, cookie cutter perfect...." And yet, here we are. So when the oncologist told us that with the bone marrow transplant that The odds are on his side and that someone like you who's active will bounce back much faster it's almost hard to jump on the positive train along with him. When we got to the stairs to leave, I absolutely fell apart. I had been saying repeatedly for two weeks that Of COURSE the marrow would come back clear, Thomas don't be so stupid! How could it NOT tackle that last 10-15%?!?!?! I felt like SUCH a jackass!
Anyway, I guess we'll know more today after talking to the guy who's done so many of these. From what the oncologist explained to us, it seems that my daunting ideas of bone marrow transplants isn't really the case these days. Just felt like I should share an update on how terrible things seem to be going. On the bright side, going to do this now, means that he will be sort of out of the clear from the marrow transplant around the same time that he would have finished the consolidation phase of chemo... and with the transplant there is no maintenance chemo, saving 18 months on treatment time. So hopefully for once everything does go according to plan and he does well and we can get back to our lives sooner than expected.
Over and Out.
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