Wednesday, July 9, 2008
Tuesday, July 8, 2008
Settling In
I think I'm going to ditch the "Day X" start for each post. My brain is so scatter-shot worrying about other things that I'm having a fair amount of trouble remembering what day of the week it is much less how long we have been here. When Ann gets to her next transplant I'll pick it up again, but for now it's getting a rest.
On to today's news:
Ann is out of the hospital and we spent the majority of the day checking her out and moving to the charity apartment. That included buying groceries for an on-the-fly-easy-to-make-minimal-clean-up menu, picking up the essentials like thermometers and personal stuff we didn't leave Baton Rouge with cause who knew we would end up here again. However, I did find time to stop in at the Stem Cell Transplant office and talk to the business reps.
I made sure that they had a copy of our new insurance and let them know that our doctor expressed and interest in moving as fast as possible. The reps are going to get something called an EOC (Estimate of Charges) from the doctor and then send it straight to the insurance company so that they can release funds for a new donor search. I got the impression that these inital steps would not take long to do, but I don't have a specific time line for them.
The rest of our day was uppacking our few possessions, collecting receipts and trying to make ourselves comfortable (more or less) in foriegn surroundings. I have been managing to "borrow" a WiFi connection from someone in the apartment complex who doesn't know what a WEP key is. I feel a little bad about it as he/she is proably wondering why their internet connecton is so slow. But based on how WiFi works and the amount of transcievers packed into modern computers, I can't be the only one doing it either.
I have been getting a bunch of emails about the NTAF Fund. Let me take a moment to address them as well as the comments left here on the blog:
Yes, the NTAF account is still open. If you want to make a donation to help with medical expenses (prescription copays, over the counter meds MDA's pharmacy doesn't stock, insurance payments, etc) then you can follow the link on the blog (right sidebar near the big infinity, heart and gear symbol) and make a donation and it will be much appreciated. However, I'm grateful that you, loyal reader, found us interesting enough to merit the time out of your busy day it takes to read about, the hopes, love, fear and lives of people you have never met. I can't ask for anything more.
Thank you for letting us know we are not alone, that's more than generous.
On to today's news:
Ann is out of the hospital and we spent the majority of the day checking her out and moving to the charity apartment. That included buying groceries for an on-the-fly-easy-to-make-minimal-clean-up menu, picking up the essentials like thermometers and personal stuff we didn't leave Baton Rouge with cause who knew we would end up here again. However, I did find time to stop in at the Stem Cell Transplant office and talk to the business reps.
I made sure that they had a copy of our new insurance and let them know that our doctor expressed and interest in moving as fast as possible. The reps are going to get something called an EOC (Estimate of Charges) from the doctor and then send it straight to the insurance company so that they can release funds for a new donor search. I got the impression that these inital steps would not take long to do, but I don't have a specific time line for them.
The rest of our day was uppacking our few possessions, collecting receipts and trying to make ourselves comfortable (more or less) in foriegn surroundings. I have been managing to "borrow" a WiFi connection from someone in the apartment complex who doesn't know what a WEP key is. I feel a little bad about it as he/she is proably wondering why their internet connecton is so slow. But based on how WiFi works and the amount of transcievers packed into modern computers, I can't be the only one doing it either.
I have been getting a bunch of emails about the NTAF Fund. Let me take a moment to address them as well as the comments left here on the blog:
Yes, the NTAF account is still open. If you want to make a donation to help with medical expenses (prescription copays, over the counter meds MDA's pharmacy doesn't stock, insurance payments, etc) then you can follow the link on the blog (right sidebar near the big infinity, heart and gear symbol) and make a donation and it will be much appreciated. However, I'm grateful that you, loyal reader, found us interesting enough to merit the time out of your busy day it takes to read about, the hopes, love, fear and lives of people you have never met. I can't ask for anything more.
Thank you for letting us know we are not alone, that's more than generous.
Monday, July 7, 2008
Rough Outlines of a Plan
Day 7
We met with Dr. Kebriaei today and now have the rough outlines of a plan together. It's a six part plan with a few challenges along the way. We will have to get through each successfully get to the next step.
Step 1 (33% - 2 weeks remaining)
Get Ann into a stable remission. This basically re-induction chemo for a week, followed by a second round of steroids and chemo on the second week. Finally the last week is for observation and a bone marrow biopsy to check for leukemia in the marrow.
If remission is achieved then we move on to Step 2, if not then we will repeat Step 1 again.
Step 1a (2 Weeks)
On the assumption that Ann will attain remission, MDA will begin a new donor search. We are limited to either another Double CBT, or a 9/10 MUD. The doctors will conference and determine the best choice to emphasize the GvH/GvL effect.
Ann and I have both told Dr. Kebriaei that we would like to be as "rough" as possible, in the hopes that it leads to much better disease control than we got with the first two cords (e.g. lots more GvH).
Step 2 (2 Weeks for CBT or 6 weeks for 9/10 MUD)
Ann's chemo will continue through this step regardless of weather she is in remission. Stopping chemo could invite a relapse at this stage.
At this stage we should have a donor identified and once everyone (including us) are on board, then the donor will be activated. For a cord that means basically it gets thawed out. For a 9/10 MUD it means the donor gets a called and goes in for testing. Then if they don't have any problems (HIV, Hep C etc) that would prevent them from donating, they will either donate marrow or PBSC(s). Either will then be transported to MDA.
I think at this point me and Ann are leaning towards 9/10 MUD matches just for the added chance at a DLI (we had to fore go that this time because of the CBT - you can't get donor leukocytes from a umbilical cord), but we'll see how the recommendations come out.
Step 3 (2 weeks to 4 weeks)
Ann enters preconditioning for the BMT. Here once again we have asked that Dr. Kebriaei be as intense as possible. This is based on our belief that the harder we hit the disease when it's down the better our chances and the fact that Ann sailed through the pre-BMT conditioning last time. If we do have a 9/10 MUD the preconditioning will be different than the double CBT we did last year.
Then we are waiting for engraftement, which could take anything from 3 to 4 weeks.
Step 4 (10 weeks give or take)
During this period Ann will be monitored for GvH, and infections at the ATC clinic same as last time. The end of this time is the 100 day mark. After which we will be cleared to leave Houston and MDA behind.
Step 5 (Top Secret)
This step is under development...
Step 6 (the next 40 or 50 years)
Live the rest of our lives together and try to raise our adopted children to be smarter, better, and happier people than we are.
We have a big day tomorrow. Ann is scheduled to get out of the hospital and I have to go and meet with the charity apartment people. As last time we seem to have lucked out and an apartment has become available at the very last minute on the day Ann is due to get out of chemo. After that I need to go shopping and pick up supplies (food, toiletries, etc). We will also be picking up a ton of prescriptions, and that kills me. Ann has gone from taking 1 pill a day + supplement, back to what will probably be 20 or 30 a day.
Before I forget Dr. Kebriaei also gave us the official prognosis for another BMT...20% give or take about 9% (based on the NMDP data). At least it's not zero.
We met with Dr. Kebriaei today and now have the rough outlines of a plan together. It's a six part plan with a few challenges along the way. We will have to get through each successfully get to the next step.
Step 1 (33% - 2 weeks remaining)
Get Ann into a stable remission. This basically re-induction chemo for a week, followed by a second round of steroids and chemo on the second week. Finally the last week is for observation and a bone marrow biopsy to check for leukemia in the marrow.
If remission is achieved then we move on to Step 2, if not then we will repeat Step 1 again.
Step 1a (2 Weeks)
On the assumption that Ann will attain remission, MDA will begin a new donor search. We are limited to either another Double CBT, or a 9/10 MUD. The doctors will conference and determine the best choice to emphasize the GvH/GvL effect.
Ann and I have both told Dr. Kebriaei that we would like to be as "rough" as possible, in the hopes that it leads to much better disease control than we got with the first two cords (e.g. lots more GvH).
Step 2 (2 Weeks for CBT or 6 weeks for 9/10 MUD)
Ann's chemo will continue through this step regardless of weather she is in remission. Stopping chemo could invite a relapse at this stage.
At this stage we should have a donor identified and once everyone (including us) are on board, then the donor will be activated. For a cord that means basically it gets thawed out. For a 9/10 MUD it means the donor gets a called and goes in for testing. Then if they don't have any problems (HIV, Hep C etc) that would prevent them from donating, they will either donate marrow or PBSC(s). Either will then be transported to MDA.
I think at this point me and Ann are leaning towards 9/10 MUD matches just for the added chance at a DLI (we had to fore go that this time because of the CBT - you can't get donor leukocytes from a umbilical cord), but we'll see how the recommendations come out.
Step 3 (2 weeks to 4 weeks)
Ann enters preconditioning for the BMT. Here once again we have asked that Dr. Kebriaei be as intense as possible. This is based on our belief that the harder we hit the disease when it's down the better our chances and the fact that Ann sailed through the pre-BMT conditioning last time. If we do have a 9/10 MUD the preconditioning will be different than the double CBT we did last year.
Then we are waiting for engraftement, which could take anything from 3 to 4 weeks.
Step 4 (10 weeks give or take)
During this period Ann will be monitored for GvH, and infections at the ATC clinic same as last time. The end of this time is the 100 day mark. After which we will be cleared to leave Houston and MDA behind.
Step 5 (Top Secret)
This step is under development...
Step 6 (the next 40 or 50 years)
Live the rest of our lives together and try to raise our adopted children to be smarter, better, and happier people than we are.
We have a big day tomorrow. Ann is scheduled to get out of the hospital and I have to go and meet with the charity apartment people. As last time we seem to have lucked out and an apartment has become available at the very last minute on the day Ann is due to get out of chemo. After that I need to go shopping and pick up supplies (food, toiletries, etc). We will also be picking up a ton of prescriptions, and that kills me. Ann has gone from taking 1 pill a day + supplement, back to what will probably be 20 or 30 a day.
Before I forget Dr. Kebriaei also gave us the official prognosis for another BMT...20% give or take about 9% (based on the NMDP data). At least it's not zero.
Sunday, July 6, 2008
Day 5
Some news to report today. Ann's peripheral blast count has fallen to 0% on her CBC from this morning. Still no word on what the spots are, everything from a bruise to sweet's syndrome to leukemia cutis is in the differential right now. Doctor Thomas doesn't seem too concerned with it, but she is more focused on reducing the leukemia burden than on a "skin condition".
Still no word back from the charity apartments, so we will be moving into a hotel probably for the next two or three weeks until the next round of chemo starts. Hopefully after that we will have more "permanent" living arrangements.
Tomorrow is the much anticipated meeting with our transplant doctor. I expect/require a fairly definitive explanation as to how this situation occurred and a comprehensive plan to both address it and prevent a recurrence in the future, or we'll fire her and move onto another doctor.
Some news to report today. Ann's peripheral blast count has fallen to 0% on her CBC from this morning. Still no word on what the spots are, everything from a bruise to sweet's syndrome to leukemia cutis is in the differential right now. Doctor Thomas doesn't seem too concerned with it, but she is more focused on reducing the leukemia burden than on a "skin condition".
Still no word back from the charity apartments, so we will be moving into a hotel probably for the next two or three weeks until the next round of chemo starts. Hopefully after that we will have more "permanent" living arrangements.
Tomorrow is the much anticipated meeting with our transplant doctor. I expect/require a fairly definitive explanation as to how this situation occurred and a comprehensive plan to both address it and prevent a recurrence in the future, or we'll fire her and move onto another doctor.
Friday, July 4, 2008
Strange Spots
Day 3
Here are the strange spots I was talking about at the end of the video...They scare the shit out of me.
Here are the strange spots I was talking about at the end of the video...They scare the shit out of me.
A lovely surprise
Yesterday, the phone in my room rang and generally when this occurs, it's a wrong number. Not so on this day. A long time blog reader whom I've never met decided to take a chance and contact me. She lives about an hour outside of Houston and was headed this way and wanted to know if it would be okay to stop in and meet. Of course I said yes!
Linda and her husband just left a short while ago and they were such a treat. We talked about her niece who had gone through a similar situation with AML. Sadly, she passed away a few years ago due to complications from GvHD. We also talked about life in general and what our experiences have been so far. Linda is an absolute gem full of positive energy. Not to be outdone, Richard is a dear and a perfect foil for his spitfire wife.
I'm so glad she took a chance and reached out to us.
Chemo is going well and my white blood cell count has fallen from yesterday. I'll leave it to Chris to post numbers, etc. My platelets are also crashing, which we did expect. Strangely, though, my red blood cell count and hemoglobin are up above normal. I'm sure that this won't last, and quite frankly, I'd be really worried if it did.
I'm beginning to feel the leading edge of the chemo. I'm a little droopy and just feel a little off. This happened the last time around as well. I've begun a 24 hour drip of zofran to help offset the effects of all of the good stuff going in. I also had a lumbar puncture yesterday which went off well. At one point the needle scraped a vertebrae which was supremely unpleasant. I can't recommend it.
I just went for my first walk and managed 7 laps before my stomach started to hurt. This is another result of the chemo. Tomorrow I'll aim for 10 laps. I just don't want to fall as low as I did the first time around. Recouping most of my muscle mass was very difficult, and I never want to be that helpless again.
Last night was spent with a continuous parade of nurses and CNA's coming in and out to check my vitals and be sure that I wasn't having an allergic reaction to a new chemo drug. I think I managed a total of 4 hours of interrupted sleep in all. It'll be an early night tonight.
My appetite has fallen off a bit today. I've decided to go ahead and start supplementing with nutritional drinks just to keep my protein levels up. Last time around my body started cannibalizing my muscles because I wasn't getting enough protein. Hooray for evil tasting cake batter. I don't care what anyone says, the chocolate varieties all taste like sweet dirt. How would I know? I remember mud pies. Oh yes, I do and I bet you do too.
So, an end to my ramblings. I need to go catch up on the news of the day, such that it is. To all of my friends who have sent emails and haven't gotten responses. It's not because I haven't tried, it's because the connection here won't let me open the messages. I'm still trying. Don't give up on me.
Thursday, July 3, 2008
Look out Thunderbucket!
My nurse just started my pre-meds in anticipation of my first bag of chemo. I had just finished a robust dinner of brown meat on a bun--yummy, and taken my pills. Within seconds I was reaching for the everpresent bucket. Dinner reappeared in a new and liquid form.
The pre-meds were ones that I've had dozens of times before. A combination of zofran and a steroid. As soon as they hit my system, it was everyone for themselves.
As soon as I stopped throwing up I began to itch uncontrolaby from the neck down. I literally felt like an army of bugs was staking claim to me.
The nurses have never seen anything like this and we reassured them that this has never happened to me. The help with the sonic itching, I've been given a bag of benadryl. Sweet relief! Now only the big toe on my left foot itches. Of course, this now means that I'm ready for another nap thanks to the benadryl.
Chris suspects that DUC 8676 is fighting back. If he is, great. If he needs a road map to the cancer, just follow the flurescent chemicals to the marrow. You've been there once before, maybe you just lost your way.
Sitting before me in all of its golden splendor is a cup of Sporanox. I thought that I was done with this evil potion. Argh! I have to wait two hours after eating before I can take it. Since I threw everything up, I wonder if it matters. I'm going to take it and live dangerously.
I'll probably pass out in a few minutes. Chris may be tomorrow's blogger since I might feel a little wonky after a splendid cocktail of life prolonging chemo.
The pre-meds were ones that I've had dozens of times before. A combination of zofran and a steroid. As soon as they hit my system, it was everyone for themselves.
As soon as I stopped throwing up I began to itch uncontrolaby from the neck down. I literally felt like an army of bugs was staking claim to me.
The nurses have never seen anything like this and we reassured them that this has never happened to me. The help with the sonic itching, I've been given a bag of benadryl. Sweet relief! Now only the big toe on my left foot itches. Of course, this now means that I'm ready for another nap thanks to the benadryl.
Chris suspects that DUC 8676 is fighting back. If he is, great. If he needs a road map to the cancer, just follow the flurescent chemicals to the marrow. You've been there once before, maybe you just lost your way.
Sitting before me in all of its golden splendor is a cup of Sporanox. I thought that I was done with this evil potion. Argh! I have to wait two hours after eating before I can take it. Since I threw everything up, I wonder if it matters. I'm going to take it and live dangerously.
I'll probably pass out in a few minutes. Chris may be tomorrow's blogger since I might feel a little wonky after a splendid cocktail of life prolonging chemo.
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