I had clinic early this morning and everything was fine, so I'm writing this from the comfort of my hospital bed. I'm currently being hydrated in preparation for some yummy chemo. I'll be having a shortened round due to my pending transplant. Dr. Thomas surprised me by saying something to the effect that it could be in three weeks. That's really soon when I stop to think about it.
Last year we were in a protracted fight with my employer and insurance company about whether they would pay for my first transplant. I ended up having five rounds of chemo while we played ring around the posy. That's five months of waiting. Now I'm being told three to four weeks. What a difference a year and being unemployed makes. :)
All jokes aside, I'm happy to be getting round two. It makes me feel like we're really moving forward. It's going to be a late night since I'm getting three different chemo drugs. L-asparaginase, methotrexate, and vincristine. It's ironic that I only realized today that the neuropathy in my hands had receded from the ring fingers of both hands. Crazy. The vincristine will reverse that in short order.
Depending on who the rounding physician is, it may be a very early morning. I'll chalk tonight up to getting back into the rhythm of hospital living. The highpoint is that this should be a short stay and there's nothing wrong with that.
Thursday, August 7, 2008
Why on earth would I be up at 5 AM blogging? My magnesium was low yesterday and I had to have a take home IV of it. Actually, my PA was going to schedule it in one of the transfusion units, which would have meant hours of waiting to get in, then hours of waiting to get out. I batted my big brown eyes and asked her for a take home intermate bottle. When she was sure that we knew how to operate it, she agreed. Suffice it to say that Chris and I were pleased to be getting out of MDA early.
Whenever I have to have magnesium intravenously, I suffer a few interesting side effects. They do not come on immediately and at the moment, I've only had to have 2 outpatient infusions, so I always forget what's coming. A few hours after the 3 or 4 hour infusion finishes, I start to get really hot. It's not like when you step outside in Louisiana in July on a sunny afternoon. It's more a sensation of someone having set the inside of your skin on fire. The strange thing is that sometimes it can be in isolated spots.
Right before bed the top of my head started to feel hot. Normally, I would just crank the A/C down for relief. Chris was feeling under the weather, which meant that he was also feeling cold, so the A/C stayed well above 75 degrees, because I didn't want to freeze the poor guy out. I went to bed and pretty much fell asleep instantly. Two hours later I was awake feeling hot. I managed to fall back asleep, but every 2 hours thereafter, I would wake up for a few minutes because I was hot. When I woke up a few minutes before 5 this morning, I just gave in and got up. This means I'll be cranky/wanting a nap while waiting to get admitted. Good times. Luckily, there is a nap room at MDA--genius! Unfortunately, people don't know how to use their inside voices when there.
The last time I was in the nap room, I was lucky enough to snag a couch. I stretched out and started to sleep when a couple took up residence in the recliners next to me. I can sleep anywhere under most conditions, but this couple started to bicker in the way long time couples sometimes can in voices you would use to be heard in a noisy venue. The man wasn't feeling well which I think contributed to the situation--trust me, I fully sympathize, and his wife kept harassing him every few minutes about whether or not he wanted (fill in the blank). As an adult, I'm sure he would have asked for it if he did and under normal circumstances I would have sympathized with his wife. She didn't know what to do, so she was trying everything to help. I get it, but when it's nap time, I'm like a 3 year old. I ended up knitting while waiting for the next appointment. They were still at it when I eventually left.
Tangential stories aside, I plan on sleeping in public today. If you happen to be in clinic waiting with me, I'll be the short, bald woman in the corner, snoring like champ. That's right, I snore. Very loudly.
I need to go get ready for blood draws and other appointments. Cross your fingers that I finally get admitted for round 2 today. Now that I have a tentative transplant date, I don't want anything within my control to delay it. Okay, so I don't really have any control over my recovering liver, but I like to think that I do.
Whenever I have to have magnesium intravenously, I suffer a few interesting side effects. They do not come on immediately and at the moment, I've only had to have 2 outpatient infusions, so I always forget what's coming. A few hours after the 3 or 4 hour infusion finishes, I start to get really hot. It's not like when you step outside in Louisiana in July on a sunny afternoon. It's more a sensation of someone having set the inside of your skin on fire. The strange thing is that sometimes it can be in isolated spots.
Right before bed the top of my head started to feel hot. Normally, I would just crank the A/C down for relief. Chris was feeling under the weather, which meant that he was also feeling cold, so the A/C stayed well above 75 degrees, because I didn't want to freeze the poor guy out. I went to bed and pretty much fell asleep instantly. Two hours later I was awake feeling hot. I managed to fall back asleep, but every 2 hours thereafter, I would wake up for a few minutes because I was hot. When I woke up a few minutes before 5 this morning, I just gave in and got up. This means I'll be cranky/wanting a nap while waiting to get admitted. Good times. Luckily, there is a nap room at MDA--genius! Unfortunately, people don't know how to use their inside voices when there.
The last time I was in the nap room, I was lucky enough to snag a couch. I stretched out and started to sleep when a couple took up residence in the recliners next to me. I can sleep anywhere under most conditions, but this couple started to bicker in the way long time couples sometimes can in voices you would use to be heard in a noisy venue. The man wasn't feeling well which I think contributed to the situation--trust me, I fully sympathize, and his wife kept harassing him every few minutes about whether or not he wanted (fill in the blank). As an adult, I'm sure he would have asked for it if he did and under normal circumstances I would have sympathized with his wife. She didn't know what to do, so she was trying everything to help. I get it, but when it's nap time, I'm like a 3 year old. I ended up knitting while waiting for the next appointment. They were still at it when I eventually left.
Tangential stories aside, I plan on sleeping in public today. If you happen to be in clinic waiting with me, I'll be the short, bald woman in the corner, snoring like champ. That's right, I snore. Very loudly.
I need to go get ready for blood draws and other appointments. Cross your fingers that I finally get admitted for round 2 today. Now that I have a tentative transplant date, I don't want anything within my control to delay it. Okay, so I don't really have any control over my recovering liver, but I like to think that I do.
Wednesday, August 6, 2008
Countdown Starts: 4 Weeks to Go
We had another meeting today at MDA with Dr. Kebriaei about Ann's transplant and I have some good news to share with everyone. Ann is still on the fast track for the transplant and it looks like the first round of chemo put her back into a stable remission. The single blast cell, and handful of metameylocytes detected in the last CBC from Thursday, are gone. So it looks like Dr. Thomas' theory about their presence being a function of marrow recovery was spot-on (as usual).
The best news of the day though is that the new transplant is scheduled for 4 weeks from today. According to Dr. Kebriaei, right now MDA is working on arranging a date for the donor to go to their local hospital and donate. By implication that means that the donor has checked out as healthy and has agreed to donate again. That came as a bit of surprise to us because we kind of thought things were stalled waiting for the approval letter from the insurance company, which only just arrived Monday but apparently that wasn't the case. It's nice to be pleasantly surprised once in a while.
Our good friend Nancy Sakakura had recommended we get a consultation/second opinion from her transplant doctor (Dr. Nakamura) at City of Hope (COH) in Los Angeles, and we took her up on it. Over the last two weeks we have been talking to Dr. Nakamura about Ann's case and apart from being incredibly generous with his time, he has also provided us with invaluable insight. Without getting into a ton of details Dr. Nakamura is in agreement with MDA's plan for Ann's transplant.
It occurs to me that I have not posted the details of what is being planned for Ann's new transplant. I think for the moment I'm going to avoid doing so until we are closer to the actual event. Suffice it to say it is one of the most aggressive and forward leaning transplants that MDA has EVER tried. It's pretty exciting, because if it works it could form the back bone of treatment for patients who have relapsed after front line treatment. The data on it so far shows that it roughly doubled the survival rate of second transplants. Here's to hoping!
Tomorrow, Ann will go into the hospital for one more round of in-patient chemo - duration 1 week. Then this will be followed up by more out-patient chemo, again duration 1 week. After that, I think Dr. Thomas and Dr. Kebriaei want her to have a two week rest. Then it's on to transplant. Wow! Feels like that's just right around the corner.
The best news of the day though is that the new transplant is scheduled for 4 weeks from today. According to Dr. Kebriaei, right now MDA is working on arranging a date for the donor to go to their local hospital and donate. By implication that means that the donor has checked out as healthy and has agreed to donate again. That came as a bit of surprise to us because we kind of thought things were stalled waiting for the approval letter from the insurance company, which only just arrived Monday but apparently that wasn't the case. It's nice to be pleasantly surprised once in a while.
Our good friend Nancy Sakakura had recommended we get a consultation/second opinion from her transplant doctor (Dr. Nakamura) at City of Hope (COH) in Los Angeles, and we took her up on it. Over the last two weeks we have been talking to Dr. Nakamura about Ann's case and apart from being incredibly generous with his time, he has also provided us with invaluable insight. Without getting into a ton of details Dr. Nakamura is in agreement with MDA's plan for Ann's transplant.
It occurs to me that I have not posted the details of what is being planned for Ann's new transplant. I think for the moment I'm going to avoid doing so until we are closer to the actual event. Suffice it to say it is one of the most aggressive and forward leaning transplants that MDA has EVER tried. It's pretty exciting, because if it works it could form the back bone of treatment for patients who have relapsed after front line treatment. The data on it so far shows that it roughly doubled the survival rate of second transplants. Here's to hoping!
Tomorrow, Ann will go into the hospital for one more round of in-patient chemo - duration 1 week. Then this will be followed up by more out-patient chemo, again duration 1 week. After that, I think Dr. Thomas and Dr. Kebriaei want her to have a two week rest. Then it's on to transplant. Wow! Feels like that's just right around the corner.
It rained off and on yesterday and there was a bit of wind early in the morning, but no hurricane. I know officials were just playing it safe and with all that has happened in the last few years, I can't blame them. The bonus for the guys who work the out patient clinics is that they got an extra day off and didn't have to navigate the roads in yucky weather. I can't lie, I always enjoyed an extra day off due to inclement weather.
I spent the day knitting and trying to finish up one last baby gift. Last night, I was working on a very mindless piece and forgot to put in button holes which means I'll either have to pull it apart and do it again--it only took a few hours--or I'll have to figure something out. I'm thinking that I'll be doing the latter, since I was bored out of my mind the entire time I was knitting. After I sew up all of the pieces and attach the buttons, I'll get a baby project break. I promised the next project recipient that I would wait until she could tell me what sex I'd be knitting for. It wouldn't do to use up my stash of pink yarn for a little boy.
I'm off to get ready for the day's appointments. It's Chris's turn to blog, so we'll see if I can persuade him to do so this afternoon.
I spent the day knitting and trying to finish up one last baby gift. Last night, I was working on a very mindless piece and forgot to put in button holes which means I'll either have to pull it apart and do it again--it only took a few hours--or I'll have to figure something out. I'm thinking that I'll be doing the latter, since I was bored out of my mind the entire time I was knitting. After I sew up all of the pieces and attach the buttons, I'll get a baby project break. I promised the next project recipient that I would wait until she could tell me what sex I'd be knitting for. It wouldn't do to use up my stash of pink yarn for a little boy.
I'm off to get ready for the day's appointments. It's Chris's turn to blog, so we'll see if I can persuade him to do so this afternoon.
Monday, August 4, 2008
Good grief
My leukemia doctor's scheduler left me a message today to let me know that the outpatient clinics will be closed tomorrow due to hurricane Edouard. So, I'm rescheduled to see her on Thursday and possibly be admitted for round two. Hence the title of today's post.
I know all things happen for a reason, but toting around a packed suitcase for a week and a half starts to get ridiculous. I'm debating unpacking it and just going in on Thursday with the attitude that I won't be admitted. Reverse psychology. I show up unprepared and am virtually guaranteed a ticket to the show.
On a more positive note, the letter from my insurance company showed up today. Chris dropped off a copy to our transplant business liaison so the ball can start to roll in the right direction. That's when he learned that no testing has been done on the 9/10 donor and that they haven't been contacted yet. It would seem that we were misinformed or maybe misconstrued some information. All of the info we were given was based on some information from last transplant. Now that the letter is in hand, the hospital where the possible donor is can be contacted. At the earliest, we're looking at a four week time line before transplant. That's if all the stars align and everything goes according to plan. I'm thinking it might take a bit longer. That's fine, so long as I stay in remission and continue to do well.
Too many components. It's like having pieces left over after putting flat pack furniture together. Do you go back and read the instructions, or do you just hope that you did a good enough job?
I'm not bummed about it. In fact, I should be rather pleased that I've managed to stay out of the hospital for so long. I'm just ready to move forward so that I can spend the next 40 or 50 years torturing Chris.
I know all things happen for a reason, but toting around a packed suitcase for a week and a half starts to get ridiculous. I'm debating unpacking it and just going in on Thursday with the attitude that I won't be admitted. Reverse psychology. I show up unprepared and am virtually guaranteed a ticket to the show.
On a more positive note, the letter from my insurance company showed up today. Chris dropped off a copy to our transplant business liaison so the ball can start to roll in the right direction. That's when he learned that no testing has been done on the 9/10 donor and that they haven't been contacted yet. It would seem that we were misinformed or maybe misconstrued some information. All of the info we were given was based on some information from last transplant. Now that the letter is in hand, the hospital where the possible donor is can be contacted. At the earliest, we're looking at a four week time line before transplant. That's if all the stars align and everything goes according to plan. I'm thinking it might take a bit longer. That's fine, so long as I stay in remission and continue to do well.
Too many components. It's like having pieces left over after putting flat pack furniture together. Do you go back and read the instructions, or do you just hope that you did a good enough job?
I'm not bummed about it. In fact, I should be rather pleased that I've managed to stay out of the hospital for so long. I'm just ready to move forward so that I can spend the next 40 or 50 years torturing Chris.
Sunday, August 3, 2008
I just wanted to post to let everyone know that there's absolutely nothing going on. Our next appointment isn't until Tuesday and it's very early in the morning. If all goes well and my liver enzymes have sufficiently calibrated to normal, or close to, I should be getting admitted to the hospital for round two. I have to admit to being a little anxious about the blasts in my peripheral blood counts. I'd be rather pleased if they disappeared since they really shouldn't be there. It's just the thought that if they continue to go up, that means something distasteful and cancery. No thanks.
I did forget to mention that we ran into Aubry and Kelly while roaming the halls of MDA, waiting for my transfusion on Thursday. For those of you who don't remember, Aubry was a leukemia patient at the same time as me the first time around. If you go way back, you'll see pictures of him roping a tiny brass steer. He had a transplant late last year. The same kind I did and he looks amazing. He's got a bit of skin GvHD that he's contending with and we swapped tips and tricks for dealing with it. It was just really good to see them and hear that he's getting closer to normal and able to do some of the things he loves on his ranch. Kelly's keeping a close eye on him, so I'm sure he won't be getting into any trouble anytime soon.
So, aside from making chili, I'm laying low. I did have an "Aha!" moment today and figured out why everything tastes so weirdly sweet. When I have something with an artificial sweetener in it, it taints every single thing that I eat for the rest of the day. So, I've cut out the fake stuff and have made a few modifications. Everything still tastes weirdly sweet, but not as badly as before. I also can't taste umami, which makes me very sad. I live for it. It's like people who crave salt or sweet. I'm hoping it doesn't last for very long, because until it resolves, everything tastes like sweet library paste.
One last thing. My friend, Susan, is suffering with a mystery illness and it's got her sidelined. She's undergoing the usual battery of tests, but until they figure out what's going on, she could use some positive thoughts and prayers.
I did forget to mention that we ran into Aubry and Kelly while roaming the halls of MDA, waiting for my transfusion on Thursday. For those of you who don't remember, Aubry was a leukemia patient at the same time as me the first time around. If you go way back, you'll see pictures of him roping a tiny brass steer. He had a transplant late last year. The same kind I did and he looks amazing. He's got a bit of skin GvHD that he's contending with and we swapped tips and tricks for dealing with it. It was just really good to see them and hear that he's getting closer to normal and able to do some of the things he loves on his ranch. Kelly's keeping a close eye on him, so I'm sure he won't be getting into any trouble anytime soon.
So, aside from making chili, I'm laying low. I did have an "Aha!" moment today and figured out why everything tastes so weirdly sweet. When I have something with an artificial sweetener in it, it taints every single thing that I eat for the rest of the day. So, I've cut out the fake stuff and have made a few modifications. Everything still tastes weirdly sweet, but not as badly as before. I also can't taste umami, which makes me very sad. I live for it. It's like people who crave salt or sweet. I'm hoping it doesn't last for very long, because until it resolves, everything tastes like sweet library paste.
One last thing. My friend, Susan, is suffering with a mystery illness and it's got her sidelined. She's undergoing the usual battery of tests, but until they figure out what's going on, she could use some positive thoughts and prayers.
Friday, August 1, 2008
Antsy, jittery, impatient.
All good ways to describe what I am feeling right now, but mainly I feel like we are stuck. This is our second delay for Ann starting the next round of enhanced H-CVAD. That means we've lost a week waiting for her liver enzymes to fall to acceptable levels so that the next round doesn't do permanent damage. They are trending in the right direction (e.g. Tuesday they where 7 times normal and Thursday only 5), so that seems to be moving in the right direction.
Ann's counts continue to recover back towards their pre-relapse, post-transplant normals as the baby stem cells fight to rebuild their house. True to form they are once again cranking out the platelets (194 K/ul yesterday). The only thing that has not made a significant recovery is the reds, but that's to be expected as they take the longest time to mature of all the blood cells.
We did have a little heart stopping moment yesterday when we got Ann's CBC back and 1% blasts showed up on it. That finding was accompanied by 4% metamelyoctyes also known as neutrophil progenitors. Adding everything up our doctor believes that both of these are products of marrow recovery and not leukemia. Basically, the baby stem cells are reproducing so quickly that they accidentally shoved some cells out of the nursery and into the blood stream that wouldn't normally be there. I should point out that this has happened to Ann twice before. Once during one of her first rounds of chemo back before the transplant and once post transplant.
I would feel better about it if we had a definitive finding like the PCR or FISH tests from her most recent BMB. But they weren't ready as of yesterday, so we'll have to wait until our next clinic visit for them. That will be Tuesday and hopefully by then the liver enzyme issue will be resolved to the point that we can advance forward.
All good ways to describe what I am feeling right now, but mainly I feel like we are stuck. This is our second delay for Ann starting the next round of enhanced H-CVAD. That means we've lost a week waiting for her liver enzymes to fall to acceptable levels so that the next round doesn't do permanent damage. They are trending in the right direction (e.g. Tuesday they where 7 times normal and Thursday only 5), so that seems to be moving in the right direction.
Ann's counts continue to recover back towards their pre-relapse, post-transplant normals as the baby stem cells fight to rebuild their house. True to form they are once again cranking out the platelets (194 K/ul yesterday). The only thing that has not made a significant recovery is the reds, but that's to be expected as they take the longest time to mature of all the blood cells.
We did have a little heart stopping moment yesterday when we got Ann's CBC back and 1% blasts showed up on it. That finding was accompanied by 4% metamelyoctyes also known as neutrophil progenitors. Adding everything up our doctor believes that both of these are products of marrow recovery and not leukemia. Basically, the baby stem cells are reproducing so quickly that they accidentally shoved some cells out of the nursery and into the blood stream that wouldn't normally be there. I should point out that this has happened to Ann twice before. Once during one of her first rounds of chemo back before the transplant and once post transplant.
I would feel better about it if we had a definitive finding like the PCR or FISH tests from her most recent BMB. But they weren't ready as of yesterday, so we'll have to wait until our next clinic visit for them. That will be Tuesday and hopefully by then the liver enzyme issue will be resolved to the point that we can advance forward.
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