I had my weekly doctor's visit today and was told that things were going well. Dr. Kebriaei is a little concerned about my constant nausea. She wants to keep an eye on it in case of GvHD of the upper GI. Wouldn't that be something?
I was also told that I could stop taking cellcept Saturday night. Woo-hoo! That would mean 12 fewer pills a day. Of course, I keep having to increase the number of magnesium pills that I take daily. Net-net, I still feel good about it.
The other news I received today was that I'll have the next three days off. That's right, three days out of the ATC. My appointments fall on three days a week, now. I'm really looking forward to getting some consistent rest. We're a little worried about my hemoglobin this weekend, since I'm still trending down. The only thing we can do is be alert and head into the EC if I start to have trouble breathing or heart palpitations. I'm sure if all goes well I'll be getting an infusion in clinic on Monday. Who knows? Maybe I'll start making red blood cells on my own this weekend.
Thursday, October 9, 2008
Wednesday, October 8, 2008
Recent Blood Counts and Trends
Sorry I didn’t get a chance to post these last night. They cover the story of Ann's transplant from the beginning, all the way up to today, so you can see how her graft is reacting. Blue is the day-to-day value and red is the cellular production trend.
Tuesday, October 7, 2008
I had my very first day off from clinic today and I am happy to report that as of this minute, nothing happened. A home health company delivered a pump and magnesium last night for me to use today. I got plenty of hydration thanks to that bolus and am hopeful that my magnesium levels start to improve. The best part about today was that I got to sleep in until 8:30am. It was bliss.
I've had a little ongoing issue that I haven't mentioned before, but felt that I finally should. It would seem that one of the chemo drugs that I received--busulfan, has a nasty little side effect that manifests days or weeks after it's administered. It starts to burn your skin from the inside out and it shows up on the most sensitive skin on your body. Mine started a few days before I was released from the hospital as small clusters of dark brown dots under my arms, breasts, on my abdomen, around my groin, and on the backs of my hands. The dots quickly grew into each other and now I have large patches of irritable dark brown skin. It itches and has started peeling in places. The doctors have all assured me that this is normal and that I should be on the look out for the burned skin turning really red. This would mean a topical yeast infection. Skippy.
Right now, we're just watching it. If it progresses, then I'll be prescribed some magical creams and unguents. I'm just hoping it peels away and becomes a memory in a relatively short period of time. I've been told that it may take months.
On a more positive note, I was able to eat more today. I think it had something to do with not being held captive at the whim of food service or a lackluster cafeteria. Being able to get up and have what I wanted when I wanted it helped immensely. I also managed to keep the nausea at bay today. All in all, not bad for only being out of the hospital for a week.
I've had a little ongoing issue that I haven't mentioned before, but felt that I finally should. It would seem that one of the chemo drugs that I received--busulfan, has a nasty little side effect that manifests days or weeks after it's administered. It starts to burn your skin from the inside out and it shows up on the most sensitive skin on your body. Mine started a few days before I was released from the hospital as small clusters of dark brown dots under my arms, breasts, on my abdomen, around my groin, and on the backs of my hands. The dots quickly grew into each other and now I have large patches of irritable dark brown skin. It itches and has started peeling in places. The doctors have all assured me that this is normal and that I should be on the look out for the burned skin turning really red. This would mean a topical yeast infection. Skippy.
Right now, we're just watching it. If it progresses, then I'll be prescribed some magical creams and unguents. I'm just hoping it peels away and becomes a memory in a relatively short period of time. I've been told that it may take months.
On a more positive note, I was able to eat more today. I think it had something to do with not being held captive at the whim of food service or a lackluster cafeteria. Being able to get up and have what I wanted when I wanted it helped immensely. I also managed to keep the nausea at bay today. All in all, not bad for only being out of the hospital for a week.
Monday, October 6, 2008
Day +30
It's been a month since Ann underwent her second transplant and although things are certainly not as easy as they were the first time around, they do seem to be generally improving. Ann managed to walk from the MDA parking garage to the clinic and back, while carrying on light conversation, without too much exertion. I know that doesn’t sound like much to most of you, but its an improvement.
Ann had her first post-transplant a bone marrow biopsy along with a couple of extra vials of blood drawn for chimerism testing. Each test generates results, some of which come back quickly, other not so much, but all are delivered hot out of the laser printer, on white sheets of plain paper. I used to get the shakes and a feel the yawning pit open up under my feet every time someone handed me one of those ubiquitous cheap 8.5x11 sheets of copy paper. Things are better now with the meds, but only so at the cost of me feeling slightly disconnected. Still I can't help still wondering if the next one is going to reduce our compact little world to an even smaller dimension. Unlike loving my Wife, living in the moment is just not something I'm very good at.
The results from a Bone Marrow Biopsy are the gold-standard, big kahuna, grand unified theory of blood cancer treatment. If the marrow
is normal, which is to say has the right number of cells and they are
all healthy, then you pass. If not then you don't pass go or collect
$200.
We won't know about the chimerism test for a couple of weeks or the PCR or FISH for the marrow anytime soon. However, MDA's pathologists did manage to get the differential counts on Ann's new marrow done before we left clinic and the results are good. 1% blasts showing, with all other counts in the range for healthy adult marrow. I guess that shouldn’t have come as a surprise because I can see it in the charts I track Ann's blood work on. Which I'll post later for anyone who is interested.
Everything is nice and normal. I can live with that for the moment.
Ann had her first post-transplant a bone marrow biopsy along with a couple of extra vials of blood drawn for chimerism testing. Each test generates results, some of which come back quickly, other not so much, but all are delivered hot out of the laser printer, on white sheets of plain paper. I used to get the shakes and a feel the yawning pit open up under my feet every time someone handed me one of those ubiquitous cheap 8.5x11 sheets of copy paper. Things are better now with the meds, but only so at the cost of me feeling slightly disconnected. Still I can't help still wondering if the next one is going to reduce our compact little world to an even smaller dimension. Unlike loving my Wife, living in the moment is just not something I'm very good at.
The results from a Bone Marrow Biopsy are the gold-standard, big kahuna, grand unified theory of blood cancer treatment. If the marrow
is normal, which is to say has the right number of cells and they are
all healthy, then you pass. If not then you don't pass go or collect
$200.
We won't know about the chimerism test for a couple of weeks or the PCR or FISH for the marrow anytime soon. However, MDA's pathologists did manage to get the differential counts on Ann's new marrow done before we left clinic and the results are good. 1% blasts showing, with all other counts in the range for healthy adult marrow. I guess that shouldn’t have come as a surprise because I can see it in the charts I track Ann's blood work on. Which I'll post later for anyone who is interested.
Everything is nice and normal. I can live with that for the moment.
Saturday, October 4, 2008
Yesterday was a bit on the horrible side and it all started with the day before that.
I wrote that I'd started taking magnesium and on the advice of my PharmD, I took an imodium to go with it. Just the one to help with the side effects of the magnesium pills. It did what it should have, only it went one step further. Yesterday, I found myself with that horrible feeling that's so familiar. My digestive system had stopped, again. Nothing was happening.
Keep this in mind as I tell you that I got 1000 mL of fluid, plus a small bolus of extra magnesium and a bag of blood. This is all in addition to the fluid I took orally and any food I managed to eat. I'm sure that you can understand that as the day wore on, I took in less and less on my own as I found my clothes starting to get tight and my hands swelling. I also started to feel worse as the day wore on due to all of the fluids and the constipation.
We were in the clinic for 13 hours and by the time we got back to the apartment, I was a limp heap of misery. Having high hopes, I took some senokot and magnesium. I started to feel queasy and within minutes was vomiting violently. According to a nurse I once spoke with, if you're constipated and carrying too much fluid, you will vomit. She was right.
I vomited again about two hours later. Although I was physically more comfortable thanks to shedding some extra fluid, I was still miserable. Chris kept suggesting that I take some enulose, so I finally stopped being stubborn and took a dose.
I'll spare you any further details, but felt any transplant patients reading this might want to know what they could be in store for.
Today was a much better day, but I'm still feeling worn out from yesterday. It's amazing how hard it is to bounce back from the smallest things. I'm being patient with myself. I know it's just a matter of time. It's just so hard to watch the people I love watching me struggle. I'll get there, it's just a waiting game.
I wrote that I'd started taking magnesium and on the advice of my PharmD, I took an imodium to go with it. Just the one to help with the side effects of the magnesium pills. It did what it should have, only it went one step further. Yesterday, I found myself with that horrible feeling that's so familiar. My digestive system had stopped, again. Nothing was happening.
Keep this in mind as I tell you that I got 1000 mL of fluid, plus a small bolus of extra magnesium and a bag of blood. This is all in addition to the fluid I took orally and any food I managed to eat. I'm sure that you can understand that as the day wore on, I took in less and less on my own as I found my clothes starting to get tight and my hands swelling. I also started to feel worse as the day wore on due to all of the fluids and the constipation.
We were in the clinic for 13 hours and by the time we got back to the apartment, I was a limp heap of misery. Having high hopes, I took some senokot and magnesium. I started to feel queasy and within minutes was vomiting violently. According to a nurse I once spoke with, if you're constipated and carrying too much fluid, you will vomit. She was right.
I vomited again about two hours later. Although I was physically more comfortable thanks to shedding some extra fluid, I was still miserable. Chris kept suggesting that I take some enulose, so I finally stopped being stubborn and took a dose.
I'll spare you any further details, but felt any transplant patients reading this might want to know what they could be in store for.
Today was a much better day, but I'm still feeling worn out from yesterday. It's amazing how hard it is to bounce back from the smallest things. I'm being patient with myself. I know it's just a matter of time. It's just so hard to watch the people I love watching me struggle. I'll get there, it's just a waiting game.
Thursday, October 2, 2008
Today was another hard day. I think it was mostly due to the fact that I only managed about 4 hours of sleep last night. It was my own fault, since I stayed up to watch some shows that Chris had downloaded. I'd intended to take a nap while at the ATC, but found that I couldn't sleep there, either. By the time we left at around 2:30, I was seriously failing. I had to have a break walking out to the car, which was very upsetting to Chris. He's afraid that I might be heading in the wrong direction. I started falling asleep in the car and by the time we got back to the apartment, I was too tired to pour myself a glass of water. Chris took care of me and tucked me in for a nap. I managed to sleep in one hour fits for a total of two hours.
I saw Dr. Kebriaei while in clinic today and there were no surprises. She's going to check on the whole cellcept thing and thinks that I might be able to stop at day +50. I can live with that. I started taking magnesium yesterday, but it didn't make a difference in my labs. It did cause diarrhea, though. Right now, it's just 500mg. It will steadily go up, eventually.
I'm exhausted, but I still have to take a few pills, so I'll sign off for now.
I saw Dr. Kebriaei while in clinic today and there were no surprises. She's going to check on the whole cellcept thing and thinks that I might be able to stop at day +50. I can live with that. I started taking magnesium yesterday, but it didn't make a difference in my labs. It did cause diarrhea, though. Right now, it's just 500mg. It will steadily go up, eventually.
I'm exhausted, but I still have to take a few pills, so I'll sign off for now.
Wednesday, October 1, 2008
Chris said it was my turn to blog and I do have some catching up to do.
Last weekend, my dear friend Tina flew in from New York and I loved every minute of her visit. Sure, I hated that I was trapped in the hospital, but Tina is the kind of friend that will hold your hand and make you forget why you're upset. I've known her for twenty years and she still continues to amaze me.
She brought me trashy magazines and pored over them with me while I caught up on what was happening in the artificial world outside. She's the kind of friend who will sit quietly with you and just knows what you need, sometimes before you do. I'll just say that it was the best weekend I've had in a while and her visit was just what I needed to help me get over the hospital blues. I love you Tina, and am just so happy you're one of my friends.
I had my third clinic visit today and it was fairly routine. I needed another bolus of magnesium since all of the chemo and meds continue to deplete my body of this vital resource. The PharmD wants me to start taking oral magnesium. These are 500mg pills and she's starting me out on one a day. If I can tolerate this, ie, the resultant diarrhea isn't debilitating, they'll gradually increase my dosage. Last year, I was taking 16 magnesiums a day at one point. This wouldn't be so bad if I already weren't taking so many pills everyday. I take 16 immunosuppressants in addition to heart medication, folic acid, antivirals, anti-fungals, antacids, anti-emetics, and what ever else I'm forgetting at the moment.
I keep asking when I can stop the cellcept. This is an immunosuppressant that makes me vomit unless I can keep a high enough level of zofran in my system. I'm so serious about this that I get up in the middle of the night to take a zofran tablet. I know I have to have the cellcept to help against GvHD, but I'm also on tacrolimus for the same thing. With the last transplant, I was off cell-cept at day +30. Today, I learned that cord transplant patients now have to continue on cell-cept until day +100. Since my latest transplant was a 9 out of 10 mismatch, I suspect I'll be on this little gem of a pill for quite some time. 12 a day. Yum-yum.
I'm still having a hard time with food, but with every day, I'm able to eat a little more. The last few nights I've been waking up between 2 and 3 am, starving. It's so bad that I can't sleep and end up stumbling out of bed to eat a small container of apple sauce just to get something into my system. This is so strange since I have such a hard time eating during the waking day. I'm still having a hard time interpreting the fact that I'm hungry when I'm awake. This happened last time and I know that it will get better with time, but I never got up in the middle of the night to eat.
I put dinner off until after 7 tonight to see if I might be able to sleep the night through. My fingers are crossed. I still get up about 4 times a night for various reasons, mostly related to the loo.
I'll see Dr. Kebriaei tomorrow and I'm hopeful that I'm on track to get out at 100 days. I know any number of things can happen between now and then, but I have to take things one day at a time. I'm determined to get stronger every day and hope to start physical therapy the week after next. I'll take things a little easier this time since I'm not feeling as well as I did last time. Don't worry, I'll push myself, but within reason. Today was hard, but tomorrow will be better, as will the next day.
Last weekend, my dear friend Tina flew in from New York and I loved every minute of her visit. Sure, I hated that I was trapped in the hospital, but Tina is the kind of friend that will hold your hand and make you forget why you're upset. I've known her for twenty years and she still continues to amaze me.
She brought me trashy magazines and pored over them with me while I caught up on what was happening in the artificial world outside. She's the kind of friend who will sit quietly with you and just knows what you need, sometimes before you do. I'll just say that it was the best weekend I've had in a while and her visit was just what I needed to help me get over the hospital blues. I love you Tina, and am just so happy you're one of my friends.
I had my third clinic visit today and it was fairly routine. I needed another bolus of magnesium since all of the chemo and meds continue to deplete my body of this vital resource. The PharmD wants me to start taking oral magnesium. These are 500mg pills and she's starting me out on one a day. If I can tolerate this, ie, the resultant diarrhea isn't debilitating, they'll gradually increase my dosage. Last year, I was taking 16 magnesiums a day at one point. This wouldn't be so bad if I already weren't taking so many pills everyday. I take 16 immunosuppressants in addition to heart medication, folic acid, antivirals, anti-fungals, antacids, anti-emetics, and what ever else I'm forgetting at the moment.
I keep asking when I can stop the cellcept. This is an immunosuppressant that makes me vomit unless I can keep a high enough level of zofran in my system. I'm so serious about this that I get up in the middle of the night to take a zofran tablet. I know I have to have the cellcept to help against GvHD, but I'm also on tacrolimus for the same thing. With the last transplant, I was off cell-cept at day +30. Today, I learned that cord transplant patients now have to continue on cell-cept until day +100. Since my latest transplant was a 9 out of 10 mismatch, I suspect I'll be on this little gem of a pill for quite some time. 12 a day. Yum-yum.
I'm still having a hard time with food, but with every day, I'm able to eat a little more. The last few nights I've been waking up between 2 and 3 am, starving. It's so bad that I can't sleep and end up stumbling out of bed to eat a small container of apple sauce just to get something into my system. This is so strange since I have such a hard time eating during the waking day. I'm still having a hard time interpreting the fact that I'm hungry when I'm awake. This happened last time and I know that it will get better with time, but I never got up in the middle of the night to eat.
I put dinner off until after 7 tonight to see if I might be able to sleep the night through. My fingers are crossed. I still get up about 4 times a night for various reasons, mostly related to the loo.
I'll see Dr. Kebriaei tomorrow and I'm hopeful that I'm on track to get out at 100 days. I know any number of things can happen between now and then, but I have to take things one day at a time. I'm determined to get stronger every day and hope to start physical therapy the week after next. I'll take things a little easier this time since I'm not feeling as well as I did last time. Don't worry, I'll push myself, but within reason. Today was hard, but tomorrow will be better, as will the next day.
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