This round of cytoxin is a monster. The last time I received it was with my first transplant and it didn't have such an immediate effect of me. This time, I could feel it almost immediately. I spent the better part of today huddled in my bed struck down with stomach pain. It made eating a chore and forget about wanting to drink anything. Unfortunately, cytoxin is extraordinarily toxic to your bladder, so you have to drink copious amounts of water to eliminate it from your system. You have to suffer to be well.
I sucked it up, literally, and dealt with the discomfort.
I finally confessed to my nurse that I had a stomach ache and she suggested a few things including Maalox and something for gas. I was so miserable, I took her up on everything. Nothing worked on its own, but the discomfort eventually subsided and I was able to eat a small portion of dinner. I blame the cytoxin.
My numbers have yet to bottom out, but my doctor assures me that I shouldn't worry. It should happen any day now. I'm anxious for it to happen because the sooner I reach zero, the sooner I can work on engrafting. Not that hospital living doesn't have it's appeal, but there's something to be said for sleeping through the night without visitors coming and going at all hours.
I'm still feeling a little deflated from all of the chemicals, so that's all for now.
Wednesday, September 10, 2008
Tuesday, September 9, 2008
The first bag of cytoxin was hung around 9am this morning. An hour later I got a dose of lasix to help flush my system of the chemo. I'll get another dose of lasix around 4pm.
There's not much else to report. I'm still feeling well, all things considered. The mysterious bone pain has abated. My appetite continues to decline, which I expected to happen. Food just tastes strange and I tend to fill up rather quickly. I know that I'll start to feel unwell in the next few days thanks to the cytoxin and I'm not looking forward to it. On the plus side, I might finally catch up on some much needed sleep.
There's not much else to report. I'm still feeling well, all things considered. The mysterious bone pain has abated. My appetite continues to decline, which I expected to happen. Food just tastes strange and I tend to fill up rather quickly. I know that I'll start to feel unwell in the next few days thanks to the cytoxin and I'm not looking forward to it. On the plus side, I might finally catch up on some much needed sleep.
Sunday, September 7, 2008
To say that this transplant experience is vastly different from my first would be quite an understatement. If I'm remembering correctly, I sailed through the cord blood transplant with only a handful of bad days when I felt a little wilted around the edges. Of course there was nausea and neuropathy, but that's par for the course.
This go round things are really different. The conditioning chemo hasn't knocked me on my bottom, yet and I haven't started projectile vomiting. My energy levels seem relatively normal for me. I've been warned that this will change in a handful of days.
Last night, just before going to bed I had a scary moment. My bones started to ache like someone was exerting a lot of pressure from the inside. Of course my mind jumped to the worst. Bone pain can mean a number of things. It could be due to injections meant to stimulate your cells to multiply. It could also be a symptom of relapse. The logical part of my brain should have realized that I'd just come off of a pretty serious chemo regimen and that the likelihood that the leukemia had returned was slim. I must not have been listening.
I complained to Chris and he paged the night nurse to ask for some pain killers. When she arrived we asked her what might be going on. She admitted that she'd seen it before in as a transplant nurse, but wasn't sure of the mechanics behind the cause. She later came back after talking to the charge nurse about it to reassure us that we shouldn't worry. I tried to relax and was finally able to when the darvon kicked in and put a stop to the deep ache in my legs. My arms continued to throb, but I didn't let that stop me from going to sleep.
Today we talked to Dr. Andersson about the phenomena and he asked if it had happened with the first transplant. When I told him that nothing like it had happened his second theory was that I had been infused with such a large quantity of fluid that the pain was my body's way of adjusting to the change. Considering the size of the marrow bag and the amount of saline I get on a daily basis I can believe this.
I haven't had anymore problems today. In fact, I slept for most of it thanks to a large dose of benadryl ahead of an IVIG infusion. I'm still a little puffy and my pajamas are a little snug thanks to the extra fluid I'm carrying. C'est la vie.
On a much happier note, I want to wish my friend Patricia a very happy first birthday. Here's to hoping she has many, many more.
This go round things are really different. The conditioning chemo hasn't knocked me on my bottom, yet and I haven't started projectile vomiting. My energy levels seem relatively normal for me. I've been warned that this will change in a handful of days.
Last night, just before going to bed I had a scary moment. My bones started to ache like someone was exerting a lot of pressure from the inside. Of course my mind jumped to the worst. Bone pain can mean a number of things. It could be due to injections meant to stimulate your cells to multiply. It could also be a symptom of relapse. The logical part of my brain should have realized that I'd just come off of a pretty serious chemo regimen and that the likelihood that the leukemia had returned was slim. I must not have been listening.
I complained to Chris and he paged the night nurse to ask for some pain killers. When she arrived we asked her what might be going on. She admitted that she'd seen it before in as a transplant nurse, but wasn't sure of the mechanics behind the cause. She later came back after talking to the charge nurse about it to reassure us that we shouldn't worry. I tried to relax and was finally able to when the darvon kicked in and put a stop to the deep ache in my legs. My arms continued to throb, but I didn't let that stop me from going to sleep.
Today we talked to Dr. Andersson about the phenomena and he asked if it had happened with the first transplant. When I told him that nothing like it had happened his second theory was that I had been infused with such a large quantity of fluid that the pain was my body's way of adjusting to the change. Considering the size of the marrow bag and the amount of saline I get on a daily basis I can believe this.
I haven't had anymore problems today. In fact, I slept for most of it thanks to a large dose of benadryl ahead of an IVIG infusion. I'm still a little puffy and my pajamas are a little snug thanks to the extra fluid I'm carrying. C'est la vie.
On a much happier note, I want to wish my friend Patricia a very happy first birthday. Here's to hoping she has many, many more.
Saturday, September 6, 2008
Live Blogging (Day -0)
7:30 AM: Cells are late from the airport. No word on what's going on.
8:00 AM: Still no sign of the cells and no word on what is happening.
8:30 AM: Ann is awake and manages to eat some breakfast. Nurse checks on the marrow for me. Still no word.
9:10 AM: Nurse came in to tell us that the cells have just arrived at MDA from the airport. She is going to check on when the cell lab will be done with them. She said the marrow bag is unusually large.
9:30 AM: Ann takes a shower. She's worried the pre-meds will have her knocked out for the rest of the day. Nurse let me know that the transplant is estimated to happen at 10:00 or 11:00 AM now.
10:00 AM: Nothing yet. Lots of activity out around the nursing station.
10:35 AM: Pre-meds just started. Nurse says that the target is now 11:00 AM. I'm trying very, very hard not think about the shelf-life of the cells or how long they have been in transit.
10:45 AM: Benadryl is starting to make Ann loopy.
11:00 AM: Activity outside has died down. Looks like its not happening at 11 either.
11:04 AM: IV team is here to check on Ann's catheter. The one they put in last week for the transplant has been showing very light slow bleeding.
11:10 AM: As usual the IV team doesn’t want to do anything (they never do) and suggested that we change the dressing more often than once a week. As if we weren't doing that already.
11:15 AM: Peeked out in the hall. Dr. Andersson and the transplant team are all assembled at the the nursing station near our room going over papers.
11:30 AM: Marrow is here!
11:45 AM: Bag is hung and dripping. Pictures later
8:00 AM: Still no sign of the cells and no word on what is happening.
8:30 AM: Ann is awake and manages to eat some breakfast. Nurse checks on the marrow for me. Still no word.
9:10 AM: Nurse came in to tell us that the cells have just arrived at MDA from the airport. She is going to check on when the cell lab will be done with them. She said the marrow bag is unusually large.
9:30 AM: Ann takes a shower. She's worried the pre-meds will have her knocked out for the rest of the day. Nurse let me know that the transplant is estimated to happen at 10:00 or 11:00 AM now.
10:00 AM: Nothing yet. Lots of activity out around the nursing station.
10:35 AM: Pre-meds just started. Nurse says that the target is now 11:00 AM. I'm trying very, very hard not think about the shelf-life of the cells or how long they have been in transit.
10:45 AM: Benadryl is starting to make Ann loopy.
11:00 AM: Activity outside has died down. Looks like its not happening at 11 either.
11:04 AM: IV team is here to check on Ann's catheter. The one they put in last week for the transplant has been showing very light slow bleeding.
11:10 AM: As usual the IV team doesn’t want to do anything (they never do) and suggested that we change the dressing more often than once a week. As if we weren't doing that already.
11:15 AM: Peeked out in the hall. Dr. Andersson and the transplant team are all assembled at the the nursing station near our room going over papers.
11:30 AM: Marrow is here!
11:45 AM: Bag is hung and dripping. Pictures later
Thursday, September 4, 2008
Delay (Day -2)
We found out one more thing about Ann's donor today. She is international and comes from a country across the international date line. We know this not because we were snooping around, but because we found out today that there is going to be a slight delay in the transplant.
It was scheduled to take place Friday afternoon sometime, but now has been moved to Saturday morning to allow for transport. One of the staff here explained that it sometimes takes a little bit longer for cells coming from overseas. So putting two and two together and using a bit of math, it narrows down the country the flight is coming from.
Because all of them have flight times over 18 hours to the US the ETA of the marrow would be somewhere around 1:00 AM Friday. Assuming that the cells are on the plane by roughly midnight our time. Because the doctors and nurses are at home and sleeping it makes sense that the transplant will wait until the first thing the next morning.
It was scheduled to take place Friday afternoon sometime, but now has been moved to Saturday morning to allow for transport. One of the staff here explained that it sometimes takes a little bit longer for cells coming from overseas. So putting two and two together and using a bit of math, it narrows down the country the flight is coming from.
Because all of them have flight times over 18 hours to the US the ETA of the marrow would be somewhere around 1:00 AM Friday. Assuming that the cells are on the plane by roughly midnight our time. Because the doctors and nurses are at home and sleeping it makes sense that the transplant will wait until the first thing the next morning.
Wednesday, September 3, 2008
Dr. Kebriaei stopped in for a visit yesterday and resolved our confusion over the missing ATG. It was basically what Chris wrote in his last post. Essentially, they just want to be sure that I engraft and don't have a failure.
This conditioning regimen is vastly different from the last time I did a transplant. I've just been getting fludarabine and busulfan since Saturday. My appetite has just started declining to the point that I'm eating quarter portions at best. If I can remember to get something for nausea, I can manage to eat a little more. The only problem with this is that I end up passing out from the anti-emetics. The last time around, I was throwing up almost immediately and felt fairly wilted from the get go. This time, things are moving in that direction slowly.
I asked Dr. Andersson about this and he explained that this chemo regimen is designed to destroy a cell's ability to reproduce. Essentially, they can't make any more and just die off. His experience is that I will feel the cumulative effects of the chemo 5 or 6 days after the transplant. I can buy that based on how I've been feeling. I'm imagining being slammed all at once with that yucky "chemo" feeling and I'm not looking forward to it.
While I'm still feeling relatively alright, we do laps around the pods to keep my lungs in shape and when I can remember to, I do my incentive spirometer exercises. Aside from these little excursions there's not much else going on. I've watched more television in the last 4 days, than I can remember. I've been doing a little mindless knitting and promise to post pictures of finished projects as soon as we get out of here. Sadly, the books that I brought to pass the time are sitting in a bag collecting that strange white dust that is unique to hospital rooms.
This conditioning regimen is vastly different from the last time I did a transplant. I've just been getting fludarabine and busulfan since Saturday. My appetite has just started declining to the point that I'm eating quarter portions at best. If I can remember to get something for nausea, I can manage to eat a little more. The only problem with this is that I end up passing out from the anti-emetics. The last time around, I was throwing up almost immediately and felt fairly wilted from the get go. This time, things are moving in that direction slowly.
I asked Dr. Andersson about this and he explained that this chemo regimen is designed to destroy a cell's ability to reproduce. Essentially, they can't make any more and just die off. His experience is that I will feel the cumulative effects of the chemo 5 or 6 days after the transplant. I can buy that based on how I've been feeling. I'm imagining being slammed all at once with that yucky "chemo" feeling and I'm not looking forward to it.
While I'm still feeling relatively alright, we do laps around the pods to keep my lungs in shape and when I can remember to, I do my incentive spirometer exercises. Aside from these little excursions there's not much else going on. I've watched more television in the last 4 days, than I can remember. I've been doing a little mindless knitting and promise to post pictures of finished projects as soon as we get out of here. Sadly, the books that I brought to pass the time are sitting in a bag collecting that strange white dust that is unique to hospital rooms.
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