At this point, I believe the last time I blogged was when we found out Tom had relapsed. Quite a lot has occurred since then. So the plan then was to stop his graft vs host medicine (cyclosporine) and hope that he gets graft vs host. Well, he didn't... and to make matters worse, the biopsy yielded more leukemia in mature form.
That day was quite seriously a mess. I was down in Elk Grove doing an environmental rating visit for a provider (this is roughly 20-30 min from the hospital and a 3 hour visit). Toward the end of my visit I glanced at my phone for the time and saw that there were multiple missed calls and a few very frustrated texts all from Tom. What happened? I'll tell you, turns out I left with both sets of car keys so Tom and his mom had no way to get to his appointment. They took a taxi for the ten mile ride which cost $40!!!! To add insult to injury, they then received the news that the leukemia had progressed, etc. and that Tom would have to go into the hospital the following day.
Long story short, I left straight away, took the rest of the day off and picked up Tom and Helen from the hospital. We took Tom in the next day which took a lot of convincing. The goal again was to more aggressively try to induce graft vs. host. They had assured him it would be a short visit with just some chemo and a dli (stem cell top up) and then he could go home... so about a week.
That was all true, he came home a week later and that same night took an ambulance in to the ER with heart palpitations. The next day he had a date with the doc and the doc said he was going straight into the hospital for monitoring until he recovered ... that lasted four more weeks. So really in total he had a five week stay. Five weeks!!!! He made it home the Monday before Thanksgiving so we were very thankful!
December 12th we received his next biopsy results. Tom had not yielded any signs of graft vs. host, but he also yielded no sign of leukemia. So remission again!!! Only they were/are worried that without further intervention it won't stay this way. So they had him come in the following week and do another dli with a bigger dose of stem cells and in outpatient. Because the first time they did the dli he had shown leukemia cells, they had to do chemo, but because he is now in remission there did not need to be more chemo. So now we sit and wait and hope for enough graft vs host to happen to do the job, but not so much that he suffers any harm.
The bright side is that this year he was home and feeling good for both Thanksgiving and Christmas. So lots to be happy about. There is however a lot of anxiety in the air about whether this will work, planning for the future and trying not to think too much about what-ifs, my grandmother is in the hospital (I just found out) after recently receiving a pace maker... my work is about to have the state on us and deciding whether or not we are worthy to maintain our contract, just so much. That said, tomorrow is New Year's Eve and we can only hope for a 2014 with wonderful news and happy events!
Monday, December 30, 2013
Monday, September 30, 2013
Just When You're Feeling Confident
So today was my husband's six month post-bone marrow transplant results from the bone marrow biopsy they did a week ago, Friday. That's a sentence and a half. Going in he was of course understandably nervous, as he usually is with doctor's appointments these days. Today we were both rather nervous as this set of results sort of paints the picture if you will of how the rest of your recovery will go.
So to really set the scene, we were a couple of minutes late because he spent the morning in immense pain from some sort of nerve issue going from the back of his hip down his leg. This issue actually called for a trip to the ER on Saturday which was just to waste four hours of our lives, be informed that he didn't have a fractured hip (which we had never suspected in the first place) and being sent home no wiser than we were upon arrival. So it carried on and this morning he was in a lot of pain.
We get to the office and they have you arrive an hour early to do general labs before an appointment, Tom overhears someone get told the lab is running about forty minutes behind... great. As if the anticipation isn't working up enough anxiety as it is... his appointment was already for 11:30 which meant a large chance of them "going to lunch" and us having an extra hour of sitting there. Luckily for us that scenario didn't happen. We got called back probably forty minutes behind schedule, but better than an hour and forty minutes behind.
Dennis (the assistant of some sort) starts by taking Tom's vitals. In between his random comments the only thing making a sound in the room is the rumbling of the air vents and Tom tapping his foot rather quickly to ease the anxiety.
The doctor comes in and starts with some small talk, asking about the weekend and then going on to discuss Tom's back. I can't speak for Tom, but I know my inner dialogue was screaming, "Just tell us the news already!!!! We can talk about the reptile show afterward!" So after his small talk there was a rather awkward pause. The doctor sits in his short wheely-stool and looks at his notes. He starts off by telling us that Tom's biopsy showed a 99.08% donor cell read (down from what was I believe 99.97% or so), but said that for this time frame post-transplant that 99.08% is also good.
Then came the big news... the biopsy yielded some leukemia cells. Tom's head just dropped in sync with my heart. He said it was less than 1% and that they were early developing cells only caught by a certain protein they had on them. Ordinarily (if it hadn't been for said proteins) they would have been dismissed as normal "young" cells. So I suppose there's a slight bright side. He feels confident that with it being so early and so few that it's treatable.
The treatment plan might be a bit sketch, but I suppose what are you gonna do? The plan is to have Tom stop his graft vs. host medicine and purposefully induce graft vs. host disease. The idea being to have the immune system pipe up and fight these abnormal cells. He feels confident that this will do the trick. It will just take close monitoring of Tom in the meantime to make sure that it doesn't get out of hand and shut down any organs, etc.
In about a month they'll do another biopsy to see where he stands. If it hasn't done the trick it may be necessary to follow up with some chemo and possibly to top up with some extra donor cells. Let us hope it all works in such a clean and straight forward way as the doctor has laid out.
It's hard to not try to force some sort of rationalization onto all of this, but it's the hand we've been dealt and we'll keep playing forward.
So to really set the scene, we were a couple of minutes late because he spent the morning in immense pain from some sort of nerve issue going from the back of his hip down his leg. This issue actually called for a trip to the ER on Saturday which was just to waste four hours of our lives, be informed that he didn't have a fractured hip (which we had never suspected in the first place) and being sent home no wiser than we were upon arrival. So it carried on and this morning he was in a lot of pain.
We get to the office and they have you arrive an hour early to do general labs before an appointment, Tom overhears someone get told the lab is running about forty minutes behind... great. As if the anticipation isn't working up enough anxiety as it is... his appointment was already for 11:30 which meant a large chance of them "going to lunch" and us having an extra hour of sitting there. Luckily for us that scenario didn't happen. We got called back probably forty minutes behind schedule, but better than an hour and forty minutes behind.
Dennis (the assistant of some sort) starts by taking Tom's vitals. In between his random comments the only thing making a sound in the room is the rumbling of the air vents and Tom tapping his foot rather quickly to ease the anxiety.
The doctor comes in and starts with some small talk, asking about the weekend and then going on to discuss Tom's back. I can't speak for Tom, but I know my inner dialogue was screaming, "Just tell us the news already!!!! We can talk about the reptile show afterward!" So after his small talk there was a rather awkward pause. The doctor sits in his short wheely-stool and looks at his notes. He starts off by telling us that Tom's biopsy showed a 99.08% donor cell read (down from what was I believe 99.97% or so), but said that for this time frame post-transplant that 99.08% is also good.
Then came the big news... the biopsy yielded some leukemia cells. Tom's head just dropped in sync with my heart. He said it was less than 1% and that they were early developing cells only caught by a certain protein they had on them. Ordinarily (if it hadn't been for said proteins) they would have been dismissed as normal "young" cells. So I suppose there's a slight bright side. He feels confident that with it being so early and so few that it's treatable.
The treatment plan might be a bit sketch, but I suppose what are you gonna do? The plan is to have Tom stop his graft vs. host medicine and purposefully induce graft vs. host disease. The idea being to have the immune system pipe up and fight these abnormal cells. He feels confident that this will do the trick. It will just take close monitoring of Tom in the meantime to make sure that it doesn't get out of hand and shut down any organs, etc.
In about a month they'll do another biopsy to see where he stands. If it hasn't done the trick it may be necessary to follow up with some chemo and possibly to top up with some extra donor cells. Let us hope it all works in such a clean and straight forward way as the doctor has laid out.
It's hard to not try to force some sort of rationalization onto all of this, but it's the hand we've been dealt and we'll keep playing forward.
Friday, June 28, 2013
The Transitional Period
So here we are, for the most part Tom is doing stupendously well (knock on wood). The doctor is so pleased with his progress thus far and has said if things continue he'll be back at life in no time really. That said, he's just finishing up some pre-cautionary intrathecal chemo treatments (in which they do a spinal tap and withdrawl fluid from the lower lumbar and replace it with chemo drugs). They do this because sometimes leukemia has been known to "hide out" in the central nervous system and come back later. Luckily, Tom has never had his spinal fluid that they withdraw yield any leukemia (again, knock on wood), but they do a number of these treatments just in case there's even one in there and they can get it.
That said, while everything else is doing well, these can sometimes result in a spinal fluid leak causing immense migraines at the change of position and vomiting, etc. So since Monday (number 2 of his last 5 of these treatments) he's been feeling immensely awful. He's unable to do anything but lay down which is of course no good and sitting is definitely the worst, but when he stands these powerful headaches rush to his head and send him dizzy with pain. So there's a lot going on and it's trick as the meds don't help when it comes to quick come and go pain like that.
So anyhoo, he has three more of these joyous things to do. In the meantime, he was doing so well and is doing so well (as it's only due to these treatments that he's poorly) that I began the job hunt. Today I officially accepted an offer (after turning a couple down). Part of me continually wonders if this is a good idea, but then part of me thinks I won't know if I don't do it and I suppose I could always quit but if it's working out then we'll have some extra money and it'll get me out of the house. Tom is planning to spend his spare alone time possibly volunteering with the leukemia and lymphoma society since he is one of their honored heroes for the local fundraising walk this year. It's a strange time.
I've officially let my manager of the store I was working at for Starbucks know that I won't be actually coming back and so after 7 1/2 years of employment that's kind of bizarre. From High School through College and then some... Life beyond the barista apron should be interesting, not to mention pricey if I find myself needing an extra pick-me-up here or there. **sigh** I suppose this is all just part of the process, sort of a rebirth of life for us and we're trying to find our feet and figure out how to make this all work out. It's a bit nerve racking but exciting at the same time.
That's me done today.
That said, while everything else is doing well, these can sometimes result in a spinal fluid leak causing immense migraines at the change of position and vomiting, etc. So since Monday (number 2 of his last 5 of these treatments) he's been feeling immensely awful. He's unable to do anything but lay down which is of course no good and sitting is definitely the worst, but when he stands these powerful headaches rush to his head and send him dizzy with pain. So there's a lot going on and it's trick as the meds don't help when it comes to quick come and go pain like that.
So anyhoo, he has three more of these joyous things to do. In the meantime, he was doing so well and is doing so well (as it's only due to these treatments that he's poorly) that I began the job hunt. Today I officially accepted an offer (after turning a couple down). Part of me continually wonders if this is a good idea, but then part of me thinks I won't know if I don't do it and I suppose I could always quit but if it's working out then we'll have some extra money and it'll get me out of the house. Tom is planning to spend his spare alone time possibly volunteering with the leukemia and lymphoma society since he is one of their honored heroes for the local fundraising walk this year. It's a strange time.
I've officially let my manager of the store I was working at for Starbucks know that I won't be actually coming back and so after 7 1/2 years of employment that's kind of bizarre. From High School through College and then some... Life beyond the barista apron should be interesting, not to mention pricey if I find myself needing an extra pick-me-up here or there. **sigh** I suppose this is all just part of the process, sort of a rebirth of life for us and we're trying to find our feet and figure out how to make this all work out. It's a bit nerve racking but exciting at the same time.
That's me done today.
Subscribe to:
Posts (Atom)