No fevers today, which is good news. I am finally getting mouth sores, which are exactly what they sound like (can also be in the throat) and are caused by the chemo. Mouth sores don't go away until the new immune system starts growing, because you need the white blood cells to heal, and they can make eating and swallowing pretty painful and difficult. So, I am now on a patient controlled pain pump, or a PCA, and I have a little button I can push to get some great pain meds and feel all better.
Counts:
WBC: 0.6
HGB: 8 (had a blood transfusion today)
HCT: 22.9%
PLT: 32 (will probably have a platelet transfusion tomorrow)
The Amish are gone! I was so disappointed when I left my room for my daily walk and they were no longer there. How am I supposed to occupy myself if I can't spy on the Amish anymore?!
Saturday, December 12, 2009
Friday, December 11, 2009
Day +2
I still have very low counts and now I'm starting to run fevers. A fever is the body's normal reaction to having no immune system; basically it does whatever it can to keep you from getting sick, like running fevers to cook out any bugs that might (or rather, will) get inside and infect you. When you start running fevers they test for any infections and immediately start antibiotics and antifungals just in case you have caught something and need help getting rid of it. They rarely do find any specific infection, but when there is no immune system, it is much better to be safe and throw broad spectrum treatments at the mystery fever than to just wait around to see if there is actually something there.
Counts:
WBC: 0.6 (this is not an actual increase, probably due to normal variation in the blood sample)
HGB 9
HCT: 26.3%
PLT: 43
There is an Amish family getting treated here. Actually there are apparently two families (according to one nurse who tells me things) but the other family is finishing treatment at the outpatient clinic. I am fascinated by this on so many levels. First of all, just the fact that they are Amish is very interesting. It's a way of life that is completely, radically different from what the vast majority of people in Western, developed nations lead. Imagine cooking without a food processor? Or farming without tractors? Or how dark the house must be in the winter when the sun goes down at 5 PM and you can only use candles for light?
Then of course there is the fact that these poor families have been thrown into a situation where they have to take part in a way of life that is so different from what they are used to. I had to look up what Amish regulations are on the use of modern medical care, and apparently it differs from community to community. I think it's wonderful that these families have chosen to seek modern medicine for their children, but it must be traumatizing on so many levels. First of all, the shock and trauma that comes from having a child with cancer, and secondly going into this world that is completely different from yours. Wow.
When I walk by the room the lights are off and the television is not on (although I heard that the other Amish boy getting treated here was really amazed by the television and turned it on as soon as he was in his room. Kudos to his parents for letting him watch TV!). Interestingly, they are in a double room, and I really couldn't figure out why until today. I mean, you'd think that in the case of an Amish family they would really try to give them a private room because of the cultural problems that might arise from sharing with another family. I think though that I found out why they are in this room. It's a very large room and there are windows all along one entire wall, so there is a lot of light in the room. Of course in the winter that doesn't mean a whole lot after 5 PM but I wonder if they requested a room with good lighting?
During my last transplant I read Plain Truth by Jodi Picoult, which is about an incident in an Amish community, so it's kind of funny that during my second transplant I'm actually with the Amish.
At least I have something to interest myself with while I'm stuck in here, right?
Counts:
WBC: 0.6 (this is not an actual increase, probably due to normal variation in the blood sample)
HGB 9
HCT: 26.3%
PLT: 43
There is an Amish family getting treated here. Actually there are apparently two families (according to one nurse who tells me things) but the other family is finishing treatment at the outpatient clinic. I am fascinated by this on so many levels. First of all, just the fact that they are Amish is very interesting. It's a way of life that is completely, radically different from what the vast majority of people in Western, developed nations lead. Imagine cooking without a food processor? Or farming without tractors? Or how dark the house must be in the winter when the sun goes down at 5 PM and you can only use candles for light?
Then of course there is the fact that these poor families have been thrown into a situation where they have to take part in a way of life that is so different from what they are used to. I had to look up what Amish regulations are on the use of modern medical care, and apparently it differs from community to community. I think it's wonderful that these families have chosen to seek modern medicine for their children, but it must be traumatizing on so many levels. First of all, the shock and trauma that comes from having a child with cancer, and secondly going into this world that is completely different from yours. Wow.
When I walk by the room the lights are off and the television is not on (although I heard that the other Amish boy getting treated here was really amazed by the television and turned it on as soon as he was in his room. Kudos to his parents for letting him watch TV!). Interestingly, they are in a double room, and I really couldn't figure out why until today. I mean, you'd think that in the case of an Amish family they would really try to give them a private room because of the cultural problems that might arise from sharing with another family. I think though that I found out why they are in this room. It's a very large room and there are windows all along one entire wall, so there is a lot of light in the room. Of course in the winter that doesn't mean a whole lot after 5 PM but I wonder if they requested a room with good lighting?
During my last transplant I read Plain Truth by Jodi Picoult, which is about an incident in an Amish community, so it's kind of funny that during my second transplant I'm actually with the Amish.
At least I have something to interest myself with while I'm stuck in here, right?
Thursday, December 10, 2009
Day +1
The transplant went off smoothly yesterday and now I'm just doing a bunch of waiting.
Thank you all so much for your kind wishes, it meant a lot to me, even if I have been remiss about posting. No news meant I was a little tired.
People often describe bone marrow transplants as being anti-climactic because it's a pretty simple procedure. You get hooked up to a bag of orangey-reddish fluid, it infuses into you over however much time (mine lasted less than a half an hour), and then the nurse unhooks you and that is that. No big surgery and recovery time, you don't get to go home, no fireworks go off. There is still a long road to recovery after a bone marrow transplant. The first step in that recovery is engraftment, when the new cells start growing in my bones. That will probably happen in a couple of weeks. Right now my white count is quite low and the exciting part is keeping infection free without an immune system.
White blood cells: 0.4 (normal is 4-10)
Hemoglobin: 9.4 (normal is 12-15)
Hematocrit: 27.5% (normal is 35-45%)
Platelets: 81 (normal is 150-500)
When my hemoglobin drops below 8 and my platelets below 15 they will give me blood and platelet transfusions. Folks, it is so important to donate blood products. My treatment would not be possible if there weren't wonderful people out there who donate blood and platelets (and I fully understand that many people cannot for various reasons and this is in no way meant to disparage them). My body is not producing red blood cells or platelets right now and without transfusions I would not be in a good place. Make an appointment to donate today!
In about 2-3 weeks when I have neutrophil counts above .5 for three consecutive days I can think about going home but my immune system will still be very weak for the first 100 days after transplant and I will have to follow a restricted diet - no raw fruits or veggies, no moldy cheeses, no raw or rare meat, etc.
But that is a long way away and for now I'm taking it one day at a time. Day +1 is so far so good.
Thank you all so much for your kind wishes, it meant a lot to me, even if I have been remiss about posting. No news meant I was a little tired.
People often describe bone marrow transplants as being anti-climactic because it's a pretty simple procedure. You get hooked up to a bag of orangey-reddish fluid, it infuses into you over however much time (mine lasted less than a half an hour), and then the nurse unhooks you and that is that. No big surgery and recovery time, you don't get to go home, no fireworks go off. There is still a long road to recovery after a bone marrow transplant. The first step in that recovery is engraftment, when the new cells start growing in my bones. That will probably happen in a couple of weeks. Right now my white count is quite low and the exciting part is keeping infection free without an immune system.
White blood cells: 0.4 (normal is 4-10)
Hemoglobin: 9.4 (normal is 12-15)
Hematocrit: 27.5% (normal is 35-45%)
Platelets: 81 (normal is 150-500)
When my hemoglobin drops below 8 and my platelets below 15 they will give me blood and platelet transfusions. Folks, it is so important to donate blood products. My treatment would not be possible if there weren't wonderful people out there who donate blood and platelets (and I fully understand that many people cannot for various reasons and this is in no way meant to disparage them). My body is not producing red blood cells or platelets right now and without transfusions I would not be in a good place. Make an appointment to donate today!
In about 2-3 weeks when I have neutrophil counts above .5 for three consecutive days I can think about going home but my immune system will still be very weak for the first 100 days after transplant and I will have to follow a restricted diet - no raw fruits or veggies, no moldy cheeses, no raw or rare meat, etc.
But that is a long way away and for now I'm taking it one day at a time. Day +1 is so far so good.
Tuesday, December 8, 2009
Change in Plan
Transplant will be happening tomorrow, not today! Turns out the bag o' cells won't be arriving here until 10 PM tonight so we're just going to do the transplant tomorrow instead of today. Not a big deal at all.
I am feeling much better without the chemo. Still pretty tired, still napping during the day, but I'm eating more and not as nauseous and have a little more energy. I'll probably have a few more days like this where things are good while my white count is still normal, but once my white count bottoms out a few days from now I'll be feeling pretty crappy until my new cells start growing around Day 10-12 after transplant.
All the fun birthday plans have been put off until tomorrow and we spent the day decorating my room with balloons and streamers in preparation for tomorrow. Will try to post pictures if I find my camera.
I am feeling much better without the chemo. Still pretty tired, still napping during the day, but I'm eating more and not as nauseous and have a little more energy. I'll probably have a few more days like this where things are good while my white count is still normal, but once my white count bottoms out a few days from now I'll be feeling pretty crappy until my new cells start growing around Day 10-12 after transplant.
All the fun birthday plans have been put off until tomorrow and we spent the day decorating my room with balloons and streamers in preparation for tomorrow. Will try to post pictures if I find my camera.
Sunday, December 6, 2009
Thank goodness, today was my last day of chemo. Let's hope that tomorrow is a little better than today. I spent the whole day in bed, again. I keep having to remind myself that this is supposed to suck and I'm supposed to feel crappy and completely drained, and try to hope that the next day or next hour is better. Until it gets better, I think sleeping through the crappiness is a good technique.
Counts:
WBC: 5
Hgb: 11
Hct: 32%
Plts: 155
Tomorrow (Monday) is a day off from all treatment and I'll be using it to plan my second second bithday party. Hopefully I will also feel well enough to write "joyeux noel" and my name inside the Christmas cards I bought to send to France. It would be nice if they arrived in France before the holiday.
Counts:
WBC: 5
Hgb: 11
Hct: 32%
Plts: 155
Tomorrow (Monday) is a day off from all treatment and I'll be using it to plan my second second bithday party. Hopefully I will also feel well enough to write "joyeux noel" and my name inside the Christmas cards I bought to send to France. It would be nice if they arrived in France before the holiday.
Saturday, December 5, 2009
My concentration and memory are pretty close to zero these days, a lovely phenomenon known as "chemo brain." I barely had the patience to watch a half hour long episode of How I Met Your Mother last night and kept checking how much time I had left before it would be over. But I had a major victory today in that I have eaten a bunch of food - two bagels with peanut butter, three cups of cranberry juice, and this funky nutritional supplement mixed with Sprite. Major victory on the food front.
Other good news is that tomorrow (Sunday) is the last day of chemo! Yay! That should help me feel a little bit better. I'll probably still feel pretty crappy for the next couple of weeks until I engraft, but no chemo will definitely make each day a bit more bearable. Monday is a rest day and Tuesday is The Big Day.
Counts:
WBC: 5.1
ANC: 5.0
Hgb: 11.1
Hct: 33.8%
PLT: 200
Okay, that's about all my brain can handle for now. Thanks again for all the support and good wishes.
Other good news is that tomorrow (Sunday) is the last day of chemo! Yay! That should help me feel a little bit better. I'll probably still feel pretty crappy for the next couple of weeks until I engraft, but no chemo will definitely make each day a bit more bearable. Monday is a rest day and Tuesday is The Big Day.
Counts:
WBC: 5.1
ANC: 5.0
Hgb: 11.1
Hct: 33.8%
PLT: 200
Okay, that's about all my brain can handle for now. Thanks again for all the support and good wishes.
Friday, December 4, 2009
Getting my butt kicked
This chemo regimen is getting to me. I'm sleeping most of the day and going through all kinds of different anti-nausea drugs. So far my puke count is at 0, and I hope it stays there. Eating is still happening, just not a lot of it.
One of the side effects of busulfan, one of the drugs I'm getting, is the possibility of seizures so they put these bumper pads all around my bed and I'm taking enough anti-epileptics that my dad, who is a neurologist, was surprised. Awesome.
I'm working on plans for my second second birthday party. I decided that I'm having a second second birthday instead of a third birthday because it sounds funnier and more appropriately represents what kind of birthday this is.
During my last transplant I was able to update my blog every day except one and I'll try to do the same this time around, but I'm telling you right now that I make no promises because I'm really getting my butt kicked. The most exciting part of perhaps daily updates will be my blood counts, which are the key to knowing if I've engrafted yet (egraftment, remember, is when my donor's cells start growing inside my bones). The numbers to pay attention to are the platelets (clot your blood), hemoglobin (carries oxygen around the body), hematocrit (percentage of blood that is red blood cells), white blood cells (immune system) and specifically a type of white blood cells called the neutrophil, which are like the first responders to infection.
My counts right now are normal:
WBC: 7.5
Absolute neutrophil count (ANC): 6.9
Hemoglobin: 10.8 (this is a little low but that's because I'm getting pumped full of fluids)
Hematocrit: 32.1%
Platelets: 209
The WBCSs and ANCs will get down to 0 or very close to it in a few days and then we'll be looking for the rebound. When my hemoglobin gets under 8 they will give me blood transfusions, and when my platelets are 15-10 they'll give me platelet transfusions.
And now I'm going to bed. Thanks for all of your support and good wishes, they really mean a lot to me.
One of the side effects of busulfan, one of the drugs I'm getting, is the possibility of seizures so they put these bumper pads all around my bed and I'm taking enough anti-epileptics that my dad, who is a neurologist, was surprised. Awesome.
I'm working on plans for my second second birthday party. I decided that I'm having a second second birthday instead of a third birthday because it sounds funnier and more appropriately represents what kind of birthday this is.
During my last transplant I was able to update my blog every day except one and I'll try to do the same this time around, but I'm telling you right now that I make no promises because I'm really getting my butt kicked. The most exciting part of perhaps daily updates will be my blood counts, which are the key to knowing if I've engrafted yet (egraftment, remember, is when my donor's cells start growing inside my bones). The numbers to pay attention to are the platelets (clot your blood), hemoglobin (carries oxygen around the body), hematocrit (percentage of blood that is red blood cells), white blood cells (immune system) and specifically a type of white blood cells called the neutrophil, which are like the first responders to infection.
My counts right now are normal:
WBC: 7.5
Absolute neutrophil count (ANC): 6.9
Hemoglobin: 10.8 (this is a little low but that's because I'm getting pumped full of fluids)
Hematocrit: 32.1%
Platelets: 209
The WBCSs and ANCs will get down to 0 or very close to it in a few days and then we'll be looking for the rebound. When my hemoglobin gets under 8 they will give me blood transfusions, and when my platelets are 15-10 they'll give me platelet transfusions.
And now I'm going to bed. Thanks for all of your support and good wishes, they really mean a lot to me.
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