Day +10 (D 148)
Sometimes its really difficult finding a theme for a blog post when we have days like today, when almost nothing happened. I don't mean that literally. I mean me and Ann where not frozen in carbonite throughout the duration of the day, just nothing of substantial note actually occurred.
I have written over the last several days about Ann's WBC count being 0.1 K/uL, having bone pain and her needing occasional transfusions. Check, for all of those today. How often can you write what seems like the same thing over and over? I know we have to wait for the stem cells to do their job and work their way all the way to the end of the homeopathic cascade before they get to be white blood cells, but it's frustrating for both of us.
Ahh...I appear to have unwittingly uncovered the theme of today's blog post with out realizing it. Oh curse you creative writing!
My lovely wife has pointed out that I am something of a cultural drift net so all this talk of waiting and being frustrated has apparently sparked a memory from my childhood of watching David Carradine on Kung Fu. I can still see Caine standing in front of the venerable Master Khan asking when he can leave the temple. To which the response was "When you can take the pebble from my hand, it will be time for you to leave".
The lesson is of course that patience is required for anything worth accomplishing. Of course what Masters Khan and Po forgot to tell Caine was that you also need love. The more the better because it helps fill the dark, scary and lonely places and gives you hope while you learn to wait patiently.
Funny, I was never a big fan of Kung Fu and alway considered it more than slightly stereotypical. I suppose I just never appreciated it's philosophical elements...go figure.
Saturday, June 9, 2007
Friday, June 8, 2007
Too much medication
D +9 (D 147)
I have a special request of everyone. Since my first diagnosis, Chris and I have made several friends through our blog. Joe and Karen are two of those friends. Joe was diagnosed with MDS(precursor to leukemia) last year and had a transplant in January. As of this week, his transplant is failing, meaning that he'll probably have to have another one. He's been fighting infections throughout this and I can't help thinking that he's been through so much already. Joe and Karen are a great couple and they have so much ahead of them. Please say a prayer for them.
I continue to have odd flashes of bone pain all over my body. The pain usually occurs in a joint or a long bone and lasts for about a minute. Imagine someone tapping you on the bone with a hammer. That's almost what it feels like. My knuckles are also starting to ache again. It makes it hard to handle things. The occupational therapist thinks that I should try doing exercises that will test my dexterity. I told her that I knit and she thought that that should do it. My stomach is covered in bruises from all of the neupogen shots that I have been receiving. The bruising is because of my low platelets. The doctor said that I should get used to it, since they'd pretty much be permanent until I can start making my own platelets.
Today was a really rough day. Laren and Chris were here all day worried about me. I got extremely nauseated this morning right before breakfast. I had the emetic bucket in my lap, primed to throw up. This is the worst feeling, because you know that you will throw up bile and that's bad enough when you are on your own, but when you have two witnesses, it somehow makes it worse. Long story short, I hate to vomit in front of people. Lucky me, I managed to keep it together, but I felt so nauseous, I had to lay my head down. My doctor came in just after this and was concerned. He got my nurse to bring me a cocktail to hang on my IV to treat the nausea. This particular one knocks me out. The doctor came back two hours later and found that I was still slightly nauseated, so he ordered another medication to treat me. This was an IV bag of Ativan which completely takes me out.
The doctor said that I should take the day off today and that it would be fine if I slept for most of it. That's pretty much what happened. I remember falling asleep at 1pm and waking up at 4pm to drink the smoothie that Chris and Laren had picked up for me. As soon as I finished it, I fell asleep again and woke up a 7pm.
I feel a little bit better. The nausea comes and goes and I still feel like someone stepped on me. This is better than being passed out in my hospital bed. I'm sure tomorrow will be a better day. This means that I'll have to catch up on my walking and pedalling. I'm so ready to get out of here and the nurses assure me that the more active I am the faster I'll get out. You'd think I'd be exercising 24/7.
My counts have fairly remained the same. My white blood cell count is 0.1. I'm desperately trying to bring it up to .02. If I could only make one WBC it would be a party. My other counts are slightly higher due to the blood transfusion I had yesterday.
Chris and Laren have been donating blood and platelets for me. Laren spent all day donating platelets for me. This takes $600 off my medical bills. I can't thank her enough for being so thoughtful. Chris donated whole blood and is going back to donate again tomorrow. I couldn't have asked for better people in my life. I am truly blessed with my friends and family and especially Chris. I don't know what I did to be so lucky, but I hope I keep doing it.
I have a special request of everyone. Since my first diagnosis, Chris and I have made several friends through our blog. Joe and Karen are two of those friends. Joe was diagnosed with MDS(precursor to leukemia) last year and had a transplant in January. As of this week, his transplant is failing, meaning that he'll probably have to have another one. He's been fighting infections throughout this and I can't help thinking that he's been through so much already. Joe and Karen are a great couple and they have so much ahead of them. Please say a prayer for them.
I continue to have odd flashes of bone pain all over my body. The pain usually occurs in a joint or a long bone and lasts for about a minute. Imagine someone tapping you on the bone with a hammer. That's almost what it feels like. My knuckles are also starting to ache again. It makes it hard to handle things. The occupational therapist thinks that I should try doing exercises that will test my dexterity. I told her that I knit and she thought that that should do it. My stomach is covered in bruises from all of the neupogen shots that I have been receiving. The bruising is because of my low platelets. The doctor said that I should get used to it, since they'd pretty much be permanent until I can start making my own platelets.
Today was a really rough day. Laren and Chris were here all day worried about me. I got extremely nauseated this morning right before breakfast. I had the emetic bucket in my lap, primed to throw up. This is the worst feeling, because you know that you will throw up bile and that's bad enough when you are on your own, but when you have two witnesses, it somehow makes it worse. Long story short, I hate to vomit in front of people. Lucky me, I managed to keep it together, but I felt so nauseous, I had to lay my head down. My doctor came in just after this and was concerned. He got my nurse to bring me a cocktail to hang on my IV to treat the nausea. This particular one knocks me out. The doctor came back two hours later and found that I was still slightly nauseated, so he ordered another medication to treat me. This was an IV bag of Ativan which completely takes me out.
The doctor said that I should take the day off today and that it would be fine if I slept for most of it. That's pretty much what happened. I remember falling asleep at 1pm and waking up at 4pm to drink the smoothie that Chris and Laren had picked up for me. As soon as I finished it, I fell asleep again and woke up a 7pm.
I feel a little bit better. The nausea comes and goes and I still feel like someone stepped on me. This is better than being passed out in my hospital bed. I'm sure tomorrow will be a better day. This means that I'll have to catch up on my walking and pedalling. I'm so ready to get out of here and the nurses assure me that the more active I am the faster I'll get out. You'd think I'd be exercising 24/7.
My counts have fairly remained the same. My white blood cell count is 0.1. I'm desperately trying to bring it up to .02. If I could only make one WBC it would be a party. My other counts are slightly higher due to the blood transfusion I had yesterday.
Chris and Laren have been donating blood and platelets for me. Laren spent all day donating platelets for me. This takes $600 off my medical bills. I can't thank her enough for being so thoughtful. Chris donated whole blood and is going back to donate again tomorrow. I couldn't have asked for better people in my life. I am truly blessed with my friends and family and especially Chris. I don't know what I did to be so lucky, but I hope I keep doing it.
Thursday, June 7, 2007
"You'll feel a little stick..."
Day +8 (D 146)
Still no indication in Ann's daily blood tests that her new marrow is doing its job, despite the bone pain she is feeling. Which has spread to her arms and lower back, in addition to her legs where it started. The Doctors and Nurses have agreed with my theory that this due to crowding in the hollows of her bones due to cell growth. However they are gun shy of saying that this is a sign pointing towards engraftment.
Ann's morning blood test did show that her hemoglobin was low and she had to have a transfusion of 1 unit of red blood cells. After which we temperature jumped a bit from 98.4 F to 99.1 F. I hope thats a very, very temporary development.
To pass some time while Ann was taking a nap me and Laren decided to go and donate blood. I have a healthier respect for what Ann has been going through...that freaking needle hurt! I got queasy doing it one day and my brave wife has been doing it almost every day for the past 6 months.
Still no indication in Ann's daily blood tests that her new marrow is doing its job, despite the bone pain she is feeling. Which has spread to her arms and lower back, in addition to her legs where it started. The Doctors and Nurses have agreed with my theory that this due to crowding in the hollows of her bones due to cell growth. However they are gun shy of saying that this is a sign pointing towards engraftment.
Ann's morning blood test did show that her hemoglobin was low and she had to have a transfusion of 1 unit of red blood cells. After which we temperature jumped a bit from 98.4 F to 99.1 F. I hope thats a very, very temporary development.
To pass some time while Ann was taking a nap me and Laren decided to go and donate blood. I have a healthier respect for what Ann has been going through...that freaking needle hurt! I got queasy doing it one day and my brave wife has been doing it almost every day for the past 6 months.Wednesday, June 6, 2007
Bone Pain!
Update
They have been giving Ann neupogene shots to help prime her system with the need to make white blood cells as quickly as possible. Well today around 4PM Ann reported some pain in her leg bones. On other occasions where Ann felt bone pain after chemo it signaled the regrowth of bone marrow. Her blood results are still zero, but I hope that this is a signal that the little stem cells are mobilizing and not original cells that might have survived chemo.
They have been giving Ann neupogene shots to help prime her system with the need to make white blood cells as quickly as possible. Well today around 4PM Ann reported some pain in her leg bones. On other occasions where Ann felt bone pain after chemo it signaled the regrowth of bone marrow. Her blood results are still zero, but I hope that this is a signal that the little stem cells are mobilizing and not original cells that might have survived chemo.
Nothing Budging
Day +7 (Day 145)
Sorry we missed updating yesterday, but we are literally just waiting for some sort of result to appear in Ann's daily blood tests. Today's results are exactly what we have seen for the last couple of days, zero, nada, zip, nothing. Her WBC count is about as low as it gets. At 0.1 K/uL, they are not expecting it to pick up for at least another week or two.
Ann did need platelets today because her levels dropped below 14 K/uL, which is the threshold for platelet transfusions. There is a gradual decline of hemoglobin and platelets after a each transfusion because Ann can't replace either naturally yet. I guess I'm grateful that the decline in each after a transfusion is slow enough that Ann doesn't need to be constantly hooked up and can have some very slight measure of Independence.
Ann is keeping busy by watching dvds on her laptop, walking around floor 11 and doing her foot bike. The exercise portion occurs for the most part with out prompting. Well, for the most part anyway. The good news is that her pace and distance are steadily improving to the point that she can walk almost half a mile at a faster than normal pace. In another week or so she will be able to do the entire mile (5 times around the floor) without much trouble.
Laren is a big fan of Reno 911, and brought all the dvds with her. We started watching last night and I have to confess I pretty much gave it a pass when I saw it on TV. I don't think me or Ann realized exactly how funny the show really was. Two words: "plum smugglers"....hysterical.
Sorry we missed updating yesterday, but we are literally just waiting for some sort of result to appear in Ann's daily blood tests. Today's results are exactly what we have seen for the last couple of days, zero, nada, zip, nothing. Her WBC count is about as low as it gets. At 0.1 K/uL, they are not expecting it to pick up for at least another week or two.
Ann did need platelets today because her levels dropped below 14 K/uL, which is the threshold for platelet transfusions. There is a gradual decline of hemoglobin and platelets after a each transfusion because Ann can't replace either naturally yet. I guess I'm grateful that the decline in each after a transfusion is slow enough that Ann doesn't need to be constantly hooked up and can have some very slight measure of Independence.Ann is keeping busy by watching dvds on her laptop, walking around floor 11 and doing her foot bike. The exercise portion occurs for the most part with out prompting. Well, for the most part anyway. The good news is that her pace and distance are steadily improving to the point that she can walk almost half a mile at a faster than normal pace. In another week or so she will be able to do the entire mile (5 times around the floor) without much trouble.
Laren is a big fan of Reno 911, and brought all the dvds with her. We started watching last night and I have to confess I pretty much gave it a pass when I saw it on TV. I don't think me or Ann realized exactly how funny the show really was. Two words: "plum smugglers"....hysterical.
Monday, June 4, 2007
Happy Third Anniversary
Day +5 (D 143)
After testing for 48 hours Ann has failed to turn up any sort of bug. So she is out of contact isolation and I can stay with her again. Thats an extra special treat for us because today is our third anniversary. Normally we would spend the night at Fleming's, Ruth's or Sullivan's where we would start the night with a pair of extra dry martinis. Ann would order a medium rare fillet mignon and I would have the new york strip, with a nice ripasso like Tommasi. Then we would order the largest and chocolatiest dessert that Ann could find on the menu. We would share it over coffee and I would stare at her and try to imagine how I got to be such a luck bastard.
However, tonight we celebrated by Ann getting her 1st food from outside of the hospital since the transplant started. After being at MDA for 6 months now the menu here is looking more and more lackluster each day. To the point that Ann would prefer to eat nothing rather than have to eat meat loaf again. To solve this me and Laren (who arrived yesterday) took a side trip to walmart and picked up some food that the hospital staff approved for the transplant floor. So Ann and me celebrated our special day with Chef Boyardee single serving microwavable ravioli. Mmm...mmm...good...yes, quite.
It's a far cry from sizzling sound and mouth watering taste of a well prepared rare steak, but at least we are still together. Ann was also thrilled with the chance to eat something that didn't begin life in the MDA cafeteria kitchen. I'm sure that will wear off eventually, but if it makes her happy it can't be that bad.
On to more medically oriented news...Ann's WBC count continues to be rock bottom zero. This indicates that the new stem cells have not yet engrafted, but thats not really a surprise. They aren't really expect to for minimum of another 15 days or so. Dr. Alousi continues to tell Ann that she is "right where she needs to be..." and is "doing well". The transplant team continues to shift the dose of Prograf that they are giving Ann to find it's optimal level. Which in turn swings Ann's blood pressure around when ever it's altered. Again they expect that so it's no surprise to them and I find that more comforting than anyone can possibly imagine.
After testing for 48 hours Ann has failed to turn up any sort of bug. So she is out of contact isolation and I can stay with her again. Thats an extra special treat for us because today is our third anniversary. Normally we would spend the night at Fleming's, Ruth's or Sullivan's where we would start the night with a pair of extra dry martinis. Ann would order a medium rare fillet mignon and I would have the new york strip, with a nice ripasso like Tommasi. Then we would order the largest and chocolatiest dessert that Ann could find on the menu. We would share it over coffee and I would stare at her and try to imagine how I got to be such a luck bastard.
However, tonight we celebrated by Ann getting her 1st food from outside of the hospital since the transplant started. After being at MDA for 6 months now the menu here is looking more and more lackluster each day. To the point that Ann would prefer to eat nothing rather than have to eat meat loaf again. To solve this me and Laren (who arrived yesterday) took a side trip to walmart and picked up some food that the hospital staff approved for the transplant floor. So Ann and me celebrated our special day with Chef Boyardee single serving microwavable ravioli. Mmm...mmm...good...yes, quite.
It's a far cry from sizzling sound and mouth watering taste of a well prepared rare steak, but at least we are still together. Ann was also thrilled with the chance to eat something that didn't begin life in the MDA cafeteria kitchen. I'm sure that will wear off eventually, but if it makes her happy it can't be that bad.
On to more medically oriented news...Ann's WBC count continues to be rock bottom zero. This indicates that the new stem cells have not yet engrafted, but thats not really a surprise. They aren't really expect to for minimum of another 15 days or so. Dr. Alousi continues to tell Ann that she is "right where she needs to be..." and is "doing well". The transplant team continues to shift the dose of Prograf that they are giving Ann to find it's optimal level. Which in turn swings Ann's blood pressure around when ever it's altered. Again they expect that so it's no surprise to them and I find that more comforting than anyone can possibly imagine.
Saturday, June 2, 2007
Isolation
D +3 (Day 141)
I'm on isolation protocol again today. This means that anyone who enters the room must don an isolation gown and gloves. This also means that Chris can't spend the night unless he plans on sleeping in the gown and gloves. I'm being monitored for an intestinal virus. This means that I have to produce a specimen to be analyzed for three days. Imagine my joy. I asked what would happen if I couldn't produce a specimen today and the nurse told me that if I hadn't in 24 hours, then I'd go off isolation. This just means that when the whole complaint starts all over again in 48 hours, I'll have to go back on the same protocol. It's a vicious and disgusting circle. Seriously, if I told you guys the things I have to do involving the potty and the need to know of the nursing staff, you'd all stop reading. I'm grossed out, myself.
It's raining in Houston--again. It makes for a pretty depressing view. On the up side, at least I have a view. There are a few rooms on this floor smaller than mine without windows. Being sick is depressing enough with windows. I am happy to report that aside from the little stomach thing, I feel relatively fine. Chris gets mad when I say this, since I'm prone to telling people I'm fine when I'm not. I do actually feel pretty normal today. My appetite is still off and I'm still experimenting with what I can and can't eat. The nutritionist stays on top of me and my doctor assures me that this is normal. I think it's the menu more than my appetite. No fresh fruits or veggies. The hospital menu stays static, so it's gotten very old. The specials are usually fried, so I can't have them. Believe it or not, I would honestly kill for ramen noodles right now. It's always the things that you can't have that you start to miss the most.
I know we've been pretty sporadic with the postings lately. I'm sorry about that. Our schedules have been so strange for the last week that it's sometimes hard to find the energy to write. I promise to be better from here on out.
Before I forget, my numbers are still nothing to write home about. My doctor told me that I'm right on track today. I'd like to think that I'm a little ahead of schedule, but what do doctors know. :)
I'm on isolation protocol again today. This means that anyone who enters the room must don an isolation gown and gloves. This also means that Chris can't spend the night unless he plans on sleeping in the gown and gloves. I'm being monitored for an intestinal virus. This means that I have to produce a specimen to be analyzed for three days. Imagine my joy. I asked what would happen if I couldn't produce a specimen today and the nurse told me that if I hadn't in 24 hours, then I'd go off isolation. This just means that when the whole complaint starts all over again in 48 hours, I'll have to go back on the same protocol. It's a vicious and disgusting circle. Seriously, if I told you guys the things I have to do involving the potty and the need to know of the nursing staff, you'd all stop reading. I'm grossed out, myself.
It's raining in Houston--again. It makes for a pretty depressing view. On the up side, at least I have a view. There are a few rooms on this floor smaller than mine without windows. Being sick is depressing enough with windows. I am happy to report that aside from the little stomach thing, I feel relatively fine. Chris gets mad when I say this, since I'm prone to telling people I'm fine when I'm not. I do actually feel pretty normal today. My appetite is still off and I'm still experimenting with what I can and can't eat. The nutritionist stays on top of me and my doctor assures me that this is normal. I think it's the menu more than my appetite. No fresh fruits or veggies. The hospital menu stays static, so it's gotten very old. The specials are usually fried, so I can't have them. Believe it or not, I would honestly kill for ramen noodles right now. It's always the things that you can't have that you start to miss the most.
I know we've been pretty sporadic with the postings lately. I'm sorry about that. Our schedules have been so strange for the last week that it's sometimes hard to find the energy to write. I promise to be better from here on out.
Before I forget, my numbers are still nothing to write home about. My doctor told me that I'm right on track today. I'd like to think that I'm a little ahead of schedule, but what do doctors know. :)
Subscribe to:
Posts (Atom)