Day +44 (D 182)
I have been trying to figure out a better way to post Ann's blood counts from the CBCs (Complete Blood Counts) we get on clinic days. After doing this for officially just over half a year now, it is still awkward to construct a sentence that covers the counts, or jam them into an existing one. So to fix the problem I'm just going to table them, like so for today's counts...
WBC 4.80 K/uL (4.0 - 11.0)
ANC 3.43 K/uL (1.7 - 7.3)
RBC 2.74 K/uL (4.0 - 5.0)
HGB 8.81 G/dL (12.0 - 16.0)
PLT 86.0 K/uL (140 - 440)
The left numbers are Ann's current counts and the numbers on the right are the normal range. Now it's much easier to point out what is going on. Ann's WBC and ANC counts are in the normal range, so she continues to be free of Neupogen injections. The RBC and Hemoglobin fronts are still lagging, and probably will for the next two months or so. However, the rate at which her HGB numbers decline has begun to slow down. The star of today's numbers however has got to be the platelets. Tuesday they were at 33K, then on Friday they jumped to 61K and today they are at 86K which is a little over half way to normal.
To put it in the words of Ann's Doctor "We hit a triple": No transplant problems, Good engraftment and no GvHD so far. He seems to be cautiously positive about Ann's results so far, but he did note that we have a long way still to go. Our next sign post will be another Bone Marrow Biopsy at day +90. I'm already biting my nails.
One change that has been made is that Ann's dose of Tacrolimus (or Prograf)the main medicine that is being used to prevent GvHD has been reduced from 1 mg twice a day to 0.5 mg twice a day. The Pharm D that made the change said that this is a pretty routine shift due to tacro building up in people's systems pretty easily. They don't expect the reduction to invite the onset of GvHD.
In other news we have officially finished the move from one apartment to the other and it feels great to finally have some time off. Finished cleaning the old apartment and dropped off the keys just before setting down to type this. The rest of the weekend will be spent unpacking everything and finding places for everything to go.
One more piece of MDA related news today...it seems that M. D. Anderson has been rated the number one cancer treatment institution in the country by U.S. News and World Report. I never ever thought I would have a reason to be happy about being in Texas!
Friday, July 13, 2007
Tuesday, July 10, 2007
Debacle and Delight
Day +41 (Day 179)
I'll keep the debacle portion of this post as short as I can. We were scheduled to move into our new apartment Saturday, after the vents and ducts had been cleaned. The cleaning company was supposed to come out between 12pm and 2pm. Where have I heard that promise before? While we waited, Dixie, Chris and I finished packing up the better part of our belongings and waited. And waited. After several calls from Chris, the cleaning crew showed up a little after 5pm. I wonder if they were daylighting for the cable company. There was dust and mold on the outside of the vents in the new apartment, but we had no idea of the extent of it. The cleaners pulled the vents off and saw that the ducts were completely choked and the inside of the vents had at least three inches of dust and mold piled up on them. They examined the air handler and found that it was choked with mold and was a lost cause. Surprisingly, they just came out and said that they couldn't clean it.
Needless to say, they pronounced it unfit for me to live in. So, we went into high gear to find another apartment. I found one in the first complex that we had originally scheduled to move into and reserved it until we heard back from our landlords.
As luck would have it, our would be landlords were horrified at the condition of the apartment they were going to rent us and found us another one available Monday. Dixie wasn't able to stay and help move, but we had a really great visit. :) The new apartment is in the same complex that we currently live in and it is thankfully on the first floor. Poor Chris had to start hauling our things over to the new apartment after a long day at clinic and in the excruciating heat of Houston. You guys in Baton Rouge know what I'm talking about.
It was far too hot for him to haul everything himself, so he took a break after he had moved about two-thirds of it. We picked up a few more things today, and will finish moving tomorrow. We hope.
Now for the delight part.
My blood work showed that my platelets are up to 61,000. I'm doing it on my own so far. Yippee! That's not really the good news, though. My Chimerism test results came back today. According to it, I don't exist anymore. None of my marrow showed up. I'm 77% one umbilical cord and 23% the other. Now we're just waiting for one of the cords to completely take over and my blood type to shift over to B positive. Hooray!!! No more of my stinky cells making cancer.
I'm not out of the woods yet. I have another biopsy in 19 days and that could show something else entirely. We're just enjoying this good news right now. Chris and I were debating about the babies that the cords came from. Something tells me that they're little bad asses and I couldn't be more grateful.
I got a red blood cell transfusion yesterday and I feel great. They've added activities to my physical therapy regime since I'm doing well. Chris took it upon himself to increase my weights when no one was looking. Since I was able to do the heavier weights, the PT's decided to up the ante. Chris was quite pleased with himself. As for me, I'm sore. I do plan on increasing work outs in order to get ready for Mrs. Olympian World competitions. Beefcake! I figure I can draw in a six pack with eye-liner and fake the triceps part.
Two days off and a lot of unpacking to do. My next clinic day is Friday, so we'll see what the numbers look like then.
I'll keep the debacle portion of this post as short as I can. We were scheduled to move into our new apartment Saturday, after the vents and ducts had been cleaned. The cleaning company was supposed to come out between 12pm and 2pm. Where have I heard that promise before? While we waited, Dixie, Chris and I finished packing up the better part of our belongings and waited. And waited. After several calls from Chris, the cleaning crew showed up a little after 5pm. I wonder if they were daylighting for the cable company. There was dust and mold on the outside of the vents in the new apartment, but we had no idea of the extent of it. The cleaners pulled the vents off and saw that the ducts were completely choked and the inside of the vents had at least three inches of dust and mold piled up on them. They examined the air handler and found that it was choked with mold and was a lost cause. Surprisingly, they just came out and said that they couldn't clean it.
Needless to say, they pronounced it unfit for me to live in. So, we went into high gear to find another apartment. I found one in the first complex that we had originally scheduled to move into and reserved it until we heard back from our landlords.
As luck would have it, our would be landlords were horrified at the condition of the apartment they were going to rent us and found us another one available Monday. Dixie wasn't able to stay and help move, but we had a really great visit. :) The new apartment is in the same complex that we currently live in and it is thankfully on the first floor. Poor Chris had to start hauling our things over to the new apartment after a long day at clinic and in the excruciating heat of Houston. You guys in Baton Rouge know what I'm talking about.
It was far too hot for him to haul everything himself, so he took a break after he had moved about two-thirds of it. We picked up a few more things today, and will finish moving tomorrow. We hope.
Now for the delight part.
My blood work showed that my platelets are up to 61,000. I'm doing it on my own so far. Yippee! That's not really the good news, though. My Chimerism test results came back today. According to it, I don't exist anymore. None of my marrow showed up. I'm 77% one umbilical cord and 23% the other. Now we're just waiting for one of the cords to completely take over and my blood type to shift over to B positive. Hooray!!! No more of my stinky cells making cancer.
I'm not out of the woods yet. I have another biopsy in 19 days and that could show something else entirely. We're just enjoying this good news right now. Chris and I were debating about the babies that the cords came from. Something tells me that they're little bad asses and I couldn't be more grateful.
I got a red blood cell transfusion yesterday and I feel great. They've added activities to my physical therapy regime since I'm doing well. Chris took it upon himself to increase my weights when no one was looking. Since I was able to do the heavier weights, the PT's decided to up the ante. Chris was quite pleased with himself. As for me, I'm sore. I do plan on increasing work outs in order to get ready for Mrs. Olympian World competitions. Beefcake! I figure I can draw in a six pack with eye-liner and fake the triceps part.
Two days off and a lot of unpacking to do. My next clinic day is Friday, so we'll see what the numbers look like then.
Monday, July 9, 2007
Friday, July 6, 2007
I Made Platelets!
Day +36 (Day 174)
Dixie has come to save the day! I'm out of commission and she's here to help with the move tomorrow. Thankfully.
Today, we anticipated that I'd be getting blood products since I've been so short of breath over the last two days. When we got the report of my blood work, we were pleasantly surprised to see that my platelets had jumped from 20,000 on Tuesday to 33,000 today. I made my own platelets!
My hemoglobin was another story. I was at a 9.0 on Tuesday and a 8.2 today. My doctor likes to wait until I'm at 8.0 or below before I get red blood cells. Since I'm off for the next two days, I normally would have gotten a few units to keep me going until Monday. MDAnderson is experiencing a blood shortage, so my team decided to hold off. No blood for me. If I start experiencing side effects from low hemoglobin, I'm supposed to go to the emergency room. Chris is watching me like a hawk.
I got a good report, otherwise. I'm swimming through it just fine. We're just waiting for the GVHD to take effect. We met two other patients who had had cord blood transplants today. One patient had a very new procedure where he received a mini transplant from a matched sibling, then a mini transplant from cord blood. He had experienced quite a bit of GVHD, mostly concentrating on his skin. The other patient that we met lived in the same city where I went to highschool. He was having a rougher time of it, but he is also over 50. It was just nice to finally meet some other patients who had similar transplants and compare stories. We also ran into some friends from the transplant floor today. It was quite a social day. :)
Tomorrow is the big move. Chris hired a company to come clean out the air ducts, so I can't go over until after 3pm. I get so out of breath just walking to the bathroom, that I wouldn't have been much use during the move. I've pre-packed clothes to help. I'll just sit and be cute while they do the heavy lifting. I'm exhausted, so I'll end it all here.
Dixie has come to save the day! I'm out of commission and she's here to help with the move tomorrow. Thankfully.
Today, we anticipated that I'd be getting blood products since I've been so short of breath over the last two days. When we got the report of my blood work, we were pleasantly surprised to see that my platelets had jumped from 20,000 on Tuesday to 33,000 today. I made my own platelets!
My hemoglobin was another story. I was at a 9.0 on Tuesday and a 8.2 today. My doctor likes to wait until I'm at 8.0 or below before I get red blood cells. Since I'm off for the next two days, I normally would have gotten a few units to keep me going until Monday. MDAnderson is experiencing a blood shortage, so my team decided to hold off. No blood for me. If I start experiencing side effects from low hemoglobin, I'm supposed to go to the emergency room. Chris is watching me like a hawk.
I got a good report, otherwise. I'm swimming through it just fine. We're just waiting for the GVHD to take effect. We met two other patients who had had cord blood transplants today. One patient had a very new procedure where he received a mini transplant from a matched sibling, then a mini transplant from cord blood. He had experienced quite a bit of GVHD, mostly concentrating on his skin. The other patient that we met lived in the same city where I went to highschool. He was having a rougher time of it, but he is also over 50. It was just nice to finally meet some other patients who had similar transplants and compare stories. We also ran into some friends from the transplant floor today. It was quite a social day. :)
Tomorrow is the big move. Chris hired a company to come clean out the air ducts, so I can't go over until after 3pm. I get so out of breath just walking to the bathroom, that I wouldn't have been much use during the move. I've pre-packed clothes to help. I'll just sit and be cute while they do the heavy lifting. I'm exhausted, so I'll end it all here.
Thursday, July 5, 2007
New digs
Day +35 (Day 173)
If you've been following the blog, you know that we have to move since we're only able to stay at the charity owned apartment for six months. Chris managed to secure an apartment down the street at a different complex on short notice and everything seemed to be in place. A few days ago we got a call from our current landlord who had managed to find us another apartment with a different charity. (This was extremely nice of her, since she didn't have to do it). This ratcheted up our time frame and we were caught a little off guard. Chris had to cancel the lease at the first apartment and return most of the furniture that he'd bought to furnish it.
The new apartment that we'll be moving to is actually in the same complex that we're in now. I got a chance to see it for the first time today. It's the exact same layout, but just a little bit smaller. The one thing that we noticed was that the air vents were covered in a gray-black powder. Because of my immune system, I can't get up close and personal with lots of dust or any type of mold. It's because we're afraid of an infection settling in my lungs. Chris checked the air filter, and it hadn't been changed in eons. So, just to be safe, he's having the ducts cleaned before I move in. I don't know how much this will help, but it's something.
I'm having a problem with shortness of breath today, which points to low hemoglobin. We're planning on a long day tomorrow, since blood takes forever. My platelets should be low, too, so I should get a few units of that, too. I'll kick off the day in the diagnostic center getting blood drawn, then I'm off to physical therapy for half an hour. After that, it's IV central.
Good news, our friend Nancy is at 100 percent engraftment. Hooray!
Other than that, I don't have anything else to report.
If you've been following the blog, you know that we have to move since we're only able to stay at the charity owned apartment for six months. Chris managed to secure an apartment down the street at a different complex on short notice and everything seemed to be in place. A few days ago we got a call from our current landlord who had managed to find us another apartment with a different charity. (This was extremely nice of her, since she didn't have to do it). This ratcheted up our time frame and we were caught a little off guard. Chris had to cancel the lease at the first apartment and return most of the furniture that he'd bought to furnish it.
The new apartment that we'll be moving to is actually in the same complex that we're in now. I got a chance to see it for the first time today. It's the exact same layout, but just a little bit smaller. The one thing that we noticed was that the air vents were covered in a gray-black powder. Because of my immune system, I can't get up close and personal with lots of dust or any type of mold. It's because we're afraid of an infection settling in my lungs. Chris checked the air filter, and it hadn't been changed in eons. So, just to be safe, he's having the ducts cleaned before I move in. I don't know how much this will help, but it's something.
I'm having a problem with shortness of breath today, which points to low hemoglobin. We're planning on a long day tomorrow, since blood takes forever. My platelets should be low, too, so I should get a few units of that, too. I'll kick off the day in the diagnostic center getting blood drawn, then I'm off to physical therapy for half an hour. After that, it's IV central.
Good news, our friend Nancy is at 100 percent engraftment. Hooray!
Other than that, I don't have anything else to report.
Tuesday, July 3, 2007
Day +33 (Day 171)
Chris has declared that he is taking a vacation from blogging and I am now in charge. I think this is really funny, since he kept asking me when I was going to blog today. He finally handed me the computer with a knowing look, and so here I sit typing away. He'll crack in a day or two. :)
Our appointment at the clinic today was at noon with a blood draw at 11am. Appointments at the ATC in the middle of the day are dicey. You might get in right away, or you might wait for up to two hours. Essentially, you are at the mercy of the patients who had morning appointments. Occasionally, there are complications, and patients have to stay for transfusions, or extra infusions. Today, we waited for an hour and a half. A nurse came out and apologized and informed the patients in the waiting room that the wait would be long due to complications. I've been that patient, so I didn't mind the wait. We took the opportunity to go get lunch. I only mention this because I got a chance to go to the cafeteria and sit in public. I haven't done this in so long, I had to look at everything. Of course, I had to sit in a far corner away from everyone, just to be on the safe side, due to my baby immune system.
It was absolutely bizarre to be eating in public. I kept wanting to put my mask on in between bites, just in case someone coughed or sneezed. This was ridiculously paranoid on my part, since the closest person to me beside Chris was over 15 feet away. People can't spit that far, let alone propel their nefarious sneezy germs at me. I will admit that I had the mask on immediately after I finished eating and I purelled my hands twice. I'm not taking any chances. I've made it this far, and I'm not letting my guard down just yet.
We finally got into a room and I got hooked up immediately. My team came in shortly after and informed me that I'd be going back on the intermate. I just can't absorb magnesium. I take 2000mg orally and I get a big bag of saline and magnesium in clinic as well as the intermate at home. My PharmD is slowly increasing my oral magnesium. By Friday, I should be on 2500mg. He seems to be increasing it every four days. My nurse told me that she's seen patients take as many as 15 magnesium pills a day. These pills are honkers. Truly enormous. I couldn't imagine taking 15 of them a day. It would be like a meal.
I also got a bag of lasiks today. Chris ratted me out to the APN--because he loves me, and I forgot to bring it up. I've been getting short of breath, especially when I'm active. Active not in the sense that I'm jogging, but active in the sense that I'm trying to do normal things, like walk from point A to point B at a moderate pace. I've been complaining about retaining fluid due to all of my infusions. My fat pants don't fit anymore. The waist bands all have started rolling over when I sit. Very sexy stuff. My team has been watching my weight creep up over the last two weeks, and my doctor was of the opinion that it's better to be too wet than too dry. To put things in perspective, I'm carrying an extra gallon of fluid give or take, according to my weight. That's around eight pounds. If you start to retain too much fluid, it puts your heart and lungs at risk. The lasiks did it's job and I was running to the bathroom every 10 minutes. I don't think it took care of everything, but it's nice to be able to take a full breath.
Now for the good stuff.
We got the pathology report back on my bone marrow biopsy. (My butt still hurts from the puncture site). My counts are through the roof because I got neupogen yesterday. They'll level off again, because I'm off neupogen again. The pathology report showed "no morphologic evidence of residual acute leukemia." Yippee! No leukemia. We're still waiting on the DNA and chimerism tests. This will take a few weeks and I can't wait.
Chris has declared that he is taking a vacation from blogging and I am now in charge. I think this is really funny, since he kept asking me when I was going to blog today. He finally handed me the computer with a knowing look, and so here I sit typing away. He'll crack in a day or two. :)
Our appointment at the clinic today was at noon with a blood draw at 11am. Appointments at the ATC in the middle of the day are dicey. You might get in right away, or you might wait for up to two hours. Essentially, you are at the mercy of the patients who had morning appointments. Occasionally, there are complications, and patients have to stay for transfusions, or extra infusions. Today, we waited for an hour and a half. A nurse came out and apologized and informed the patients in the waiting room that the wait would be long due to complications. I've been that patient, so I didn't mind the wait. We took the opportunity to go get lunch. I only mention this because I got a chance to go to the cafeteria and sit in public. I haven't done this in so long, I had to look at everything. Of course, I had to sit in a far corner away from everyone, just to be on the safe side, due to my baby immune system.
It was absolutely bizarre to be eating in public. I kept wanting to put my mask on in between bites, just in case someone coughed or sneezed. This was ridiculously paranoid on my part, since the closest person to me beside Chris was over 15 feet away. People can't spit that far, let alone propel their nefarious sneezy germs at me. I will admit that I had the mask on immediately after I finished eating and I purelled my hands twice. I'm not taking any chances. I've made it this far, and I'm not letting my guard down just yet.
We finally got into a room and I got hooked up immediately. My team came in shortly after and informed me that I'd be going back on the intermate. I just can't absorb magnesium. I take 2000mg orally and I get a big bag of saline and magnesium in clinic as well as the intermate at home. My PharmD is slowly increasing my oral magnesium. By Friday, I should be on 2500mg. He seems to be increasing it every four days. My nurse told me that she's seen patients take as many as 15 magnesium pills a day. These pills are honkers. Truly enormous. I couldn't imagine taking 15 of them a day. It would be like a meal.
I also got a bag of lasiks today. Chris ratted me out to the APN--because he loves me, and I forgot to bring it up. I've been getting short of breath, especially when I'm active. Active not in the sense that I'm jogging, but active in the sense that I'm trying to do normal things, like walk from point A to point B at a moderate pace. I've been complaining about retaining fluid due to all of my infusions. My fat pants don't fit anymore. The waist bands all have started rolling over when I sit. Very sexy stuff. My team has been watching my weight creep up over the last two weeks, and my doctor was of the opinion that it's better to be too wet than too dry. To put things in perspective, I'm carrying an extra gallon of fluid give or take, according to my weight. That's around eight pounds. If you start to retain too much fluid, it puts your heart and lungs at risk. The lasiks did it's job and I was running to the bathroom every 10 minutes. I don't think it took care of everything, but it's nice to be able to take a full breath.
Now for the good stuff.
We got the pathology report back on my bone marrow biopsy. (My butt still hurts from the puncture site). My counts are through the roof because I got neupogen yesterday. They'll level off again, because I'm off neupogen again. The pathology report showed "no morphologic evidence of residual acute leukemia." Yippee! No leukemia. We're still waiting on the DNA and chimerism tests. This will take a few weeks and I can't wait.
Monday, July 2, 2007
Getting Physical
Day +32 (D 170)
Today we got the preliminary results of Ann's day +30 bone marrow biopsy. The preliminary results are just a differential count of the various cell types found in a sample or smear. Which by the way look all normal across the board. Specifically out of 400 cells counted only 2% are immature blast cells, which is perfectly normal. What is also encouraging is that the sample was not hypocelluar. That indicates that the new stem cells have really taken to there new home and are occupying lots of volume in Ann's bones. However, we still have to wait a bit more for the molecular studies from MDA's pathology lab and the chimerism study.
Ann's blood work was a bit low today, but that was to be expected after getting the weekend off with no neupogene (WBC 2.6 K/uL and ANC 1.84 K/uL). Because her ANC count dropped to the low side of normal we are going back on neupogene tonight and maybe tomorrow. The transplant team decided today that they are going to try to wean Ann off of intermate pumps of magnesium in favor of 500 mg pills. This is really welcome news because it puts us one step closer to not needing her CVC.
Finally the transplant center got Ann enrolled in the physical therapy program, and she spent part of her clinic visit getting evaluated by the therapists. The consensus of which is that she is in exceptional shape, except for some weakness in the thighs due to muscle loss dating back to her first round of chemo. However, they quickly arranged an exercises program for her that will address that problem. So from now on we will report to clinic in the morning, get hooked up on IV Fluids and then proceed to the gym for exercises.
Ann is sore from the workout but really excited to be moving forward.
Welcome to the MDA Physical Therapy Gym
Ann gets evaluated
Working out on the arm bike
Today we got the preliminary results of Ann's day +30 bone marrow biopsy. The preliminary results are just a differential count of the various cell types found in a sample or smear. Which by the way look all normal across the board. Specifically out of 400 cells counted only 2% are immature blast cells, which is perfectly normal. What is also encouraging is that the sample was not hypocelluar. That indicates that the new stem cells have really taken to there new home and are occupying lots of volume in Ann's bones. However, we still have to wait a bit more for the molecular studies from MDA's pathology lab and the chimerism study.
Ann's blood work was a bit low today, but that was to be expected after getting the weekend off with no neupogene (WBC 2.6 K/uL and ANC 1.84 K/uL). Because her ANC count dropped to the low side of normal we are going back on neupogene tonight and maybe tomorrow. The transplant team decided today that they are going to try to wean Ann off of intermate pumps of magnesium in favor of 500 mg pills. This is really welcome news because it puts us one step closer to not needing her CVC.
Finally the transplant center got Ann enrolled in the physical therapy program, and she spent part of her clinic visit getting evaluated by the therapists. The consensus of which is that she is in exceptional shape, except for some weakness in the thighs due to muscle loss dating back to her first round of chemo. However, they quickly arranged an exercises program for her that will address that problem. So from now on we will report to clinic in the morning, get hooked up on IV Fluids and then proceed to the gym for exercises.
Ann is sore from the workout but really excited to be moving forward.
Welcome to the MDA Physical Therapy Gym
Ann gets evaluated
Working out on the arm bike
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