This is the first day of two days of tests at the hospital to determine whether I'm fit enough to handle a bone marrow transplant.
Yesterday I made web pages on bone marrow/stem cell transplants and Blastic Plasmacytoid Dendritic Cell Neoplasm just because I thought there might be enough people on the internet trying to find that information in the way and from the perspective I present it. I put those pages on my Christian history site because I wasn't sure where was a better page to host them.
If you've been keeping up with this blog, and I know a lot of you have, there is nothing new there. It just happens to be collected in one place.
Hmm. I guess I could have made them pages on this blog. I'm not used to thinking about a blog having pages that don't scroll by date.
Well, they're not here. They're there, and just as readable!
Thursday, October 6, 2011
Tuesday, October 4, 2011
October 4: Literally Dizzy
So today I read completely through the warnings that they have to give me before my stem cell transplant. It was dizzying.
No, I mean it literally made me dizzy.
Somehow, I assume by the grace of God, I've been able to completely block out all negative thinking about leukemia, chemotherapy, and the stem cell transplant. Odds of dying haven't moved me (except that half hour or so after googling BPDCN), nor have I spent any time worrying about potential side effects.
That includes today, but apparently something inside me notices when I read page after page after page of "risk of nausea," "liver damage," "infections that could be fatal." When I looked up from what was probably 15 or 20 minutes of reading, it was like someone had slapped me upside the head. I was, quite literally, dizzy.
But that's not what seems weird to me. What seems weird is how I got the papers.
I went in today for a dental cleaning, which is required before the transplant. It's part of being up to date on the dental. Afterward I dropped into the stem cell transplant unit (SCT) for a tuberculosis test. The nurse practitioner in charge of my case wanted me to get that test started early because it takes a couple days to check it. Doing it today allows her to look at it Thursday and, hopefully, mark that off as negative.
So I dropped in and asked where to go and what to do. A lady at the check-in desk of the SCT unit told me she'd take care of me. She scheduled a nurse to give me the test, and she handed me a packet. "I don't know what's in there," she says, "but if there's anything to sign, don't sign it. They'll want you to sign it in front of them."
"I see. So I need to bring this back with me on Thursday?" I ask.
"Yes," she tells me.
So I sit down to wait for the test, and, naturally, I open the packet.
First page:
Boring. I turned to page two.
Whoa! I have to say, that among the side effects of treatments I'm receiving, I'm really not used to reading "chances of dying ... are 20-30%."
I thought, "Is there no advance warning about the packet itself?" It could say;
To be honest, though, I kind of liked having the risks summed up in one place.
The chances of dying from the preparatory regimen is 20% to 30%. Afterward, once the transplant is done, the risk of Graph-versus-Host Disease (GVHD) is 75% to 80%. Of the many who face GVHD, 80% will find it treatable. The other 20% will die.
The risk of dying from any of the other issues are pretty slim. So doing a little math, they're saying that currently my risk of dying from the treatment (the chemo, radiation, and transplant) are between 32% and 41%.
That's better than what I've heard.
In fact, Dr. Strickland told one of my friends in the hospital that his chances of surviving the transplant were 40%. I was there when he told him. He didn't flinch or hesitate. My friend told Dr. Strickland to be honest, and he was. No thinking about it, just "40%."
My friend's got some heart problems, so that may make it worse for him. I don't know.
I just know that right now, assuming I'm reading that paper right, they're telling people they have a 59% to 68% chance of surviving the stem cell transplant and the chemo and radiation needed to prepare for it.
I had to go get my test, so I waited until I got home to read the rest of the packet.
It is remarkably thorough. It is also clearly set up to be given in a consultation setting. Nurse Works told me that we would have a 90 minute or more briefing on Thursday. I suspect it's to go through the packet.
I also suspect it's easier to read the packet with a comforting medical professional guiding you through it.
I read it by myself anyway. Like I said, it's very thorough, and it goes through the irradiation process and each individual chemotherapy drug. It addresses GVHD, and it discusses the side effects of the immunosuppressive treatments for GVHD. It's 5 pages of potential problems, a truly "dizzying" list. These are just the ones listed as "common":
Oops, wait. Let me give you one that's a little frightening, but it's pretty cool. This whole process is amazing! They take stem cells from an umbilical cord and placenta and simply inject them in a vein in your arm. From there, nature takes over completely. Those stem cells see the serious lack of bone marrow and associated blood cells, so they plant themselves in your bones and go to work.
So the first potential side effect is frightening, but it's as astounding as the whole process is.
They add, "Infections can become life threatening as a result of your body's decreased ability to control them."
Frightening, yes, but the whole idea is just amazing. (I think I said that already.) Here's one more interesting result of this amazing process: "You will need to repeat some of your childhood immunizations when your immune system has become capable of responding, probably a year or more after transplant."
A whole new immune system. Wow.
Okay, here's that list:
Those are the ones listed under "Common"! They're separated out by the various treatments, and I avoided repeating nausea, vomiting, fever, weakness, high blood sugar, liver abnormalities and a couple others that are mentioned repeatedly.
Really, I'm not as worried as it might sound. In fact, I can't say I'm worried at all. On the other hand, I've always known there's two parts of our brain. There's the left-brained part that thinks logically, of which we're always conscious. However, because that sort of thinking is in our conscious, it can only handle so much information. Huge amounts of information, such as our general perception of life—and long lists like the one above—are processed in our more intuitive and less conscious right brain.
The intuitive part of our brain doesn't kick out words and sentences. It kicks out feelings, which is why we have those "gut feelings" and "hunches." It's also why those gut feelings and hunches are so often correct.
However, it's also why we are possessed by an eerie sort of fright when we're alone in a dimly lit house. That sort of feeling may have served us well as we crept through a thick jungle in twilight, but it's mostly useless in the average house in a civilized town or city.
It's that part of my brain that kicks out the dizzy feeling after reading through five pages of "common" side effects.
Right now, though, I feel just fine. Apparently the intuitive side of my brain has gotten settled with the idea that this is the route God has called me to. This is the way I'm supposed to go, so it will all work out good in the end. "Yeah, though I should walk through the valley of death" and all that.
That combination of a logical, conscious side and an intuitive, feeling-oriented side is what makes us human. That's why it's silly to apologize for how you feel (or, if you're a Christian, to repent for something you merely felt). You have little control over how you feel.
Those feelings, though, are suggestions from your intuitive side about what to do. You're supposed to combine that with your more logical side and make a moral choice about what you're going to do.
On the other side, when your logical side is being checked by the feelings that rise up from your intuition, you should pay attention. Americans, and perhaps all westerners, are prone to ignoring their intuitive side. That's a route to unhappiness.
Just sayin'.
No, I mean it literally made me dizzy.
That includes today, but apparently something inside me notices when I read page after page after page of "risk of nausea," "liver damage," "infections that could be fatal." When I looked up from what was probably 15 or 20 minutes of reading, it was like someone had slapped me upside the head. I was, quite literally, dizzy.
But that's not what seems weird to me. What seems weird is how I got the papers.
I went in today for a dental cleaning, which is required before the transplant. It's part of being up to date on the dental. Afterward I dropped into the stem cell transplant unit (SCT) for a tuberculosis test. The nurse practitioner in charge of my case wanted me to get that test started early because it takes a couple days to check it. Doing it today allows her to look at it Thursday and, hopefully, mark that off as negative.
So I dropped in and asked where to go and what to do. A lady at the check-in desk of the SCT unit told me she'd take care of me. She scheduled a nurse to give me the test, and she handed me a packet. "I don't know what's in there," she says, "but if there's anything to sign, don't sign it. They'll want you to sign it in front of them."
"I see. So I need to bring this back with me on Thursday?" I ask.
"Yes," she tells me.
So I sit down to wait for the test, and, naturally, I open the packet.
First page:
"You have been referred to Vanderbilt ... Your case was presented to the transplant committee on 7/11/11 by ..."
Boring. I turned to page two.
"Hickman catheter (central line): Complications of placement: blah, blah ... Infection: 30% chance of getting infected, not life-threatening ...
Preparative regimen and side effects: Chances of dying from regimen related toxicities are 20-30%"
Whoa! I have to say, that among the side effects of treatments I'm receiving, I'm really not used to reading "chances of dying ... are 20-30%."
I thought, "Is there no advance warning about the packet itself?" It could say;
WARNING: This packet contains brutally honest health information of which you have not yet been apprised. Complications associated with opening and reading this packet without professional assistance include nausea, vomiting, and heart trauma. ... Oh, and dizziness.
A Little Summing Up
To be honest, though, I kind of liked having the risks summed up in one place.
The chances of dying from the preparatory regimen is 20% to 30%. Afterward, once the transplant is done, the risk of Graph-versus-Host Disease (GVHD) is 75% to 80%. Of the many who face GVHD, 80% will find it treatable. The other 20% will die.
The risk of dying from any of the other issues are pretty slim. So doing a little math, they're saying that currently my risk of dying from the treatment (the chemo, radiation, and transplant) are between 32% and 41%.
That's better than what I've heard.
In fact, Dr. Strickland told one of my friends in the hospital that his chances of surviving the transplant were 40%. I was there when he told him. He didn't flinch or hesitate. My friend told Dr. Strickland to be honest, and he was. No thinking about it, just "40%."
My friend's got some heart problems, so that may make it worse for him. I don't know.
I just know that right now, assuming I'm reading that paper right, they're telling people they have a 59% to 68% chance of surviving the stem cell transplant and the chemo and radiation needed to prepare for it.
Dizzying Side Effects
I had to go get my test, so I waited until I got home to read the rest of the packet.
It is remarkably thorough. It is also clearly set up to be given in a consultation setting. Nurse Works told me that we would have a 90 minute or more briefing on Thursday. I suspect it's to go through the packet.
 |
| This is me getting ready for the previous picture |
I read it by myself anyway. Like I said, it's very thorough, and it goes through the irradiation process and each individual chemotherapy drug. It addresses GVHD, and it discusses the side effects of the immunosuppressive treatments for GVHD. It's 5 pages of potential problems, a truly "dizzying" list. These are just the ones listed as "common":
Oops, wait. Let me give you one that's a little frightening, but it's pretty cool. This whole process is amazing! They take stem cells from an umbilical cord and placenta and simply inject them in a vein in your arm. From there, nature takes over completely. Those stem cells see the serious lack of bone marrow and associated blood cells, so they plant themselves in your bones and go to work.
So the first potential side effect is frightening, but it's as astounding as the whole process is.
Your new immune system will have to learn to protect you from infections, much like that of a baby. Because you still have viruses and possibly other organisms in and on your body that you have picked up during your life, they may be able to become active again and make you ill.
They add, "Infections can become life threatening as a result of your body's decreased ability to control them."
Frightening, yes, but the whole idea is just amazing. (I think I said that already.) Here's one more interesting result of this amazing process: "You will need to repeat some of your childhood immunizations when your immune system has become capable of responding, probably a year or more after transplant."
A whole new immune system. Wow.
"Common" Side Effects
Okay, here's that list:
- Shortness of breath
- Weakness
- Fatigue
- Infections
- Thinning and loss of hair
- Infertility
- Loss of appetite
- Chills
- Fever
- Nerve pain in arms and legs
- Nausea
- Vomiting
- Stomach pain
- Sores in the mouth or stomach
- Loss of desire to eat
- Diarrhea
- Skin becomes dark
- Drowsiness
- Restlessness
- Dizziness
- Poor coordination
- Poor judgment
- Headache
- Tremors
- High blood pressure
- Excessive hair growth on the face and limbs
- Electrolyte imbalance
- Sinusitis
- High blood sugar
- Growth of too much body hair
- Kidney damage
- Skin rash
- Liver function abnormalities
- Dry eyes
- Dry mouth
- Dry, flaky skin
- Joint pain similar to arthritis
- Face appears fat and swollen
- Weak bones (osteoporosis)
- Insomnia
- Mood swings
- Increased appetite
- Muscle weakness
- Cataracts
Those are the ones listed under "Common"! They're separated out by the various treatments, and I avoided repeating nausea, vomiting, fever, weakness, high blood sugar, liver abnormalities and a couple others that are mentioned repeatedly.
Really, I'm not as worried as it might sound. In fact, I can't say I'm worried at all. On the other hand, I've always known there's two parts of our brain. There's the left-brained part that thinks logically, of which we're always conscious. However, because that sort of thinking is in our conscious, it can only handle so much information. Huge amounts of information, such as our general perception of life—and long lists like the one above—are processed in our more intuitive and less conscious right brain.
The intuitive part of our brain doesn't kick out words and sentences. It kicks out feelings, which is why we have those "gut feelings" and "hunches." It's also why those gut feelings and hunches are so often correct.
However, it's also why we are possessed by an eerie sort of fright when we're alone in a dimly lit house. That sort of feeling may have served us well as we crept through a thick jungle in twilight, but it's mostly useless in the average house in a civilized town or city.
It's that part of my brain that kicks out the dizzy feeling after reading through five pages of "common" side effects.
Right now, though, I feel just fine. Apparently the intuitive side of my brain has gotten settled with the idea that this is the route God has called me to. This is the way I'm supposed to go, so it will all work out good in the end. "Yeah, though I should walk through the valley of death" and all that.
A Little Advice
That combination of a logical, conscious side and an intuitive, feeling-oriented side is what makes us human. That's why it's silly to apologize for how you feel (or, if you're a Christian, to repent for something you merely felt). You have little control over how you feel.
Those feelings, though, are suggestions from your intuitive side about what to do. You're supposed to combine that with your more logical side and make a moral choice about what you're going to do.
On the other side, when your logical side is being checked by the feelings that rise up from your intuition, you should pay attention. Americans, and perhaps all westerners, are prone to ignoring their intuitive side. That's a route to unhappiness.
Just sayin'.
Monday, October 3, 2011
October 3: Surprises and Faith
I wandered back into Vanderbilt this morning for what I thought was a routine blood test. See how much everything is up, then wait around for all the tests on Thursday. Not so.
I can look at my blood counts as soon as the doctors can. They come up on a web site called My Health at Vanderbilt. I have my own account, and I can see the results of most of my tests except the major ones. I have to request a copy from my medical records for those. I got a copy of the the original pathology report that led to my diagnosis, which was very cool.
Today, though, just for a second, it was breathtaking. The first thing that comes up on the test is my white blood cell count. The part of the page with the counts looks like this:
Sorry for any blurriness. I can't even check it. Like a couple other web sites lately, Blogger has updated its look, so there's things that don't work. (Delicious and Facebook were the others.) I can't preview my post!
Anyway, the point is, that 3.0 leaped right out at me. It was 6.8 last week. It's not supposed to be going down. It didn't need to go up, either, because 6.8 is smack dab in the middle of normal. 3.0 is not!!
The next thing I checked was neutrophils. That's a portion of the white blood cells, the ones that fight bacteria. My neutrophils were nearly 5,000, which is really good, but they couldn't be 5,000 today because that 3.0 means that I only had a 3,000 count of all my white blood cells put together. Since the neutrophils are a portion of that, they could be no higher than 3,000, and they could only be at 3,000 if I had no others.
So I checked. That "NT AUTOMATED ABS" near the bottom is the preliminary finding of the neutrophil level. That 0.94 means it's at 940, which is not real good.
Leukemia patients don't like to see their white blood cell counts be where they don't expect them to be.
Next I checked all the other counts. Platelets up. Red blood cells up.
Conclusion? This is weird.
When the nurse practitioner, Meg, walked in, she looked at me, checked the expression on my face and immediately asked, "Did you see your counts already?"
"Yeah."
She took a moment to figure out what to say, so I jumped in. "White blood cells down, and everything else up. I thought, 'That's weird.'"
Her turn to say "Yeah."
Then she told me that she checked with the Dr. Strickland about the counts, and it seemed impossible to both of them that I could have relapsed so soon after a chemo treatment. They just had to figure that maybe my neutrophil counts were still ramped up from the Neulasta shot last week and they're still setttling.
So we're leaving everything on schedule. One particular set of counts, called "differentials," hadn't come back yet. She said she'd call me if they had to change anything. "Change" would mean do the bone marrow biopsy on Thursday to make sure everything's okay but cancel all the other tests.
Hmm.
So now the differentials have come back, but that's a set of counts I can't read.
To me, this is an adventure. So some off kilter blood cell counts is just something more to watch God work through.
Next to the apartment complex officeI got some perspective on that this morning. I overheard a man telling what was probably his son that all his counts were down except his platelets. I got to talking to him, and they're treating him for a stage 4 cancer that has moved into his bone marrow. I don't know what the cancer is. Either way, the treatments aren't working, so they're still fishing around for an answer. The current treatments increase his platelets, but not anything else. Then, after a couple days, the treatment wears off, and his platelets crash, too.
His white blood cell count was 1.3, less than half of what mine are today. His son was asking about why the dad wasn't being told to wear a mask. I explained neutrophils to them, which they'd never heard of. Chances are his neutrophil count must be a pretty high percentage of those 1300 worth of white blood cells.
He got called off before I could get much further talking with him. When he left, I bowed my head and prayed for him.
Jerry, who's been my partner through all this treatment. He's got Acute Myeloid Leukemia, and our treatments are similar. We've been on virtually the same time frame. He started his first chemo two days before mine, and his second chemo was one week after mine. They had to make two attempts to put him in remission the first time around, so he fell behind.
He's got enough dental problems that they don't want him to go through transplant with the teeth he has left. Too much chance of infection or abscess.
His insurance must think that's an okay treatment because they're paying for the room and the anesthesiologist, but for some reason they're refusing to pay for the extractions. So he's facing a $3600 bill while he's not working and on disability, barely getting by. I happen to know a friend of his is helping out with some needs he has, but I'd like to help him with this. They'll actually do the extraction as soon as he pays 30% down, which is $1080.
The doctor and the nurse practitioner are looking for financial help to pull that off for him as well. There are charities that help with things like that if we can find them. I'm hoping to contribute to that as well.
If you're willing to help me help, you can use this donate button. It's not tax-deductible because it's just going to my Paypal account, and I'm giving it to him. He's not a charitable organization, so it's not tax-deductible. On the other hand, I never collect any money at that PayPal account, so it can't get mixed up with any other funds. If it's in that PayPal account, I'm giving it to Jerry.
If you don't already trust me, you better not give anything. You have to put in the amount when you click the button. I haven't put any predetermined amount in there.
We went back to Rose Creek Village this weekend. It was great. This weekend was a festival we call the Ingathering, which corresponds to the Jewish Feast of Booths, though we really didn't mean for that to be so. Originally, it was a just a time to camp out together. It is still that, but like the Jewish festival, it's also a reminder of where we came from and the principles that make us who we are.
(Primarily there is one principle at the center of Rose Creek Village. Jesus said that it is the unity of his disciples that would testify to the world that he was really sent from God and that it is a notable, mutual love that would prove to those outside that we are his disciples.)
Anyway, a lot of friends join us for the Ingathering nowadays, and it's a really pleasant time, especially because we've been gone so much the last three months.
So Saturday night one of our dear friends, named Donna, came over and hugged my wife and me, saying, "I have to get a hug because I don't know how much longer you'll be around."
Now of course what she meant was, "I don't know when you're going back to Nashville, and I don't know how much I'll get to see you when you do." Still, because of how it sounded, I couldn't resist answering with, "Yeah, we could drop dead even before winter's out."
Donna's a really neat lady. She's only polite when it's appropriate to be. When politeness is just a nicety, she opts for being real. So she looked at me and said, "You jerk. You know that's not what I meant. What a jerk!"
She was laughing, though.
(As an extremely interesting aside, Donna knows something about death. She was choked to death once and put in a morgue. When she sat up on the slab after being there about 45 minutes, she scared the living daylights out of the morgue nurse. That sort of experience puts some zeal for life and trust for God in a person.)
Any other Ingathering stories really belong on my other blog.
And I'll let you know what the doctor has to say about my differentials as soon as I know.
I can look at my blood counts as soon as the doctors can. They come up on a web site called My Health at Vanderbilt. I have my own account, and I can see the results of most of my tests except the major ones. I have to request a copy from my medical records for those. I got a copy of the the original pathology report that led to my diagnosis, which was very cool.
Today, though, just for a second, it was breathtaking. The first thing that comes up on the test is my white blood cell count. The part of the page with the counts looks like this:
Sorry for any blurriness. I can't even check it. Like a couple other web sites lately, Blogger has updated its look, so there's things that don't work. (Delicious and Facebook were the others.) I can't preview my post!
 |
| Picture I took walking one afternoon last week |
The next thing I checked was neutrophils. That's a portion of the white blood cells, the ones that fight bacteria. My neutrophils were nearly 5,000, which is really good, but they couldn't be 5,000 today because that 3.0 means that I only had a 3,000 count of all my white blood cells put together. Since the neutrophils are a portion of that, they could be no higher than 3,000, and they could only be at 3,000 if I had no others.
So I checked. That "NT AUTOMATED ABS" near the bottom is the preliminary finding of the neutrophil level. That 0.94 means it's at 940, which is not real good.
Leukemia patients don't like to see their white blood cell counts be where they don't expect them to be.
Next I checked all the other counts. Platelets up. Red blood cells up.
 |
| Picture I took while walking one morning last week |
When the nurse practitioner, Meg, walked in, she looked at me, checked the expression on my face and immediately asked, "Did you see your counts already?"
"Yeah."
She took a moment to figure out what to say, so I jumped in. "White blood cells down, and everything else up. I thought, 'That's weird.'"
Her turn to say "Yeah."
Then she told me that she checked with the Dr. Strickland about the counts, and it seemed impossible to both of them that I could have relapsed so soon after a chemo treatment. They just had to figure that maybe my neutrophil counts were still ramped up from the Neulasta shot last week and they're still setttling.
So we're leaving everything on schedule. One particular set of counts, called "differentials," hadn't come back yet. She said she'd call me if they had to change anything. "Change" would mean do the bone marrow biopsy on Thursday to make sure everything's okay but cancel all the other tests.
Hmm.
So now the differentials have come back, but that's a set of counts I can't read.
The Adventure
To me, this is an adventure. So some off kilter blood cell counts is just something more to watch God work through.
Next to the apartment complex officeI got some perspective on that this morning. I overheard a man telling what was probably his son that all his counts were down except his platelets. I got to talking to him, and they're treating him for a stage 4 cancer that has moved into his bone marrow. I don't know what the cancer is. Either way, the treatments aren't working, so they're still fishing around for an answer. The current treatments increase his platelets, but not anything else. Then, after a couple days, the treatment wears off, and his platelets crash, too.
His white blood cell count was 1.3, less than half of what mine are today. His son was asking about why the dad wasn't being told to wear a mask. I explained neutrophils to them, which they'd never heard of. Chances are his neutrophil count must be a pretty high percentage of those 1300 worth of white blood cells.
He got called off before I could get much further talking with him. When he left, I bowed my head and prayed for him.
Speaking of Needs, Can You Help With ...
Jerry, who's been my partner through all this treatment. He's got Acute Myeloid Leukemia, and our treatments are similar. We've been on virtually the same time frame. He started his first chemo two days before mine, and his second chemo was one week after mine. They had to make two attempts to put him in remission the first time around, so he fell behind.
He's got enough dental problems that they don't want him to go through transplant with the teeth he has left. Too much chance of infection or abscess.
His insurance must think that's an okay treatment because they're paying for the room and the anesthesiologist, but for some reason they're refusing to pay for the extractions. So he's facing a $3600 bill while he's not working and on disability, barely getting by. I happen to know a friend of his is helping out with some needs he has, but I'd like to help him with this. They'll actually do the extraction as soon as he pays 30% down, which is $1080.
The doctor and the nurse practitioner are looking for financial help to pull that off for him as well. There are charities that help with things like that if we can find them. I'm hoping to contribute to that as well.
If you're willing to help me help, you can use this donate button. It's not tax-deductible because it's just going to my Paypal account, and I'm giving it to him. He's not a charitable organization, so it's not tax-deductible. On the other hand, I never collect any money at that PayPal account, so it can't get mixed up with any other funds. If it's in that PayPal account, I'm giving it to Jerry.
If you don't already trust me, you better not give anything. You have to put in the amount when you click the button. I haven't put any predetermined amount in there.
A Story (He Said, Changing the Subject with No Transition)
We went back to Rose Creek Village this weekend. It was great. This weekend was a festival we call the Ingathering, which corresponds to the Jewish Feast of Booths, though we really didn't mean for that to be so. Originally, it was a just a time to camp out together. It is still that, but like the Jewish festival, it's also a reminder of where we came from and the principles that make us who we are.
(Primarily there is one principle at the center of Rose Creek Village. Jesus said that it is the unity of his disciples that would testify to the world that he was really sent from God and that it is a notable, mutual love that would prove to those outside that we are his disciples.)
 |
| Some of the tents at the Ingathering |
So Saturday night one of our dear friends, named Donna, came over and hugged my wife and me, saying, "I have to get a hug because I don't know how much longer you'll be around."
Now of course what she meant was, "I don't know when you're going back to Nashville, and I don't know how much I'll get to see you when you do." Still, because of how it sounded, I couldn't resist answering with, "Yeah, we could drop dead even before winter's out."
Donna's a really neat lady. She's only polite when it's appropriate to be. When politeness is just a nicety, she opts for being real. So she looked at me and said, "You jerk. You know that's not what I meant. What a jerk!"
She was laughing, though.
(As an extremely interesting aside, Donna knows something about death. She was choked to death once and put in a morgue. When she sat up on the slab after being there about 45 minutes, she scared the living daylights out of the morgue nurse. That sort of experience puts some zeal for life and trust for God in a person.)
 |
| Children dancing as we sing; it's a festival! |
And I'll let you know what the doctor has to say about my differentials as soon as I know.
Thursday, September 29, 2011
September 29 Update
I got my call today. I'm officially turned over to the transplant team.
I go in Thursday and Friday to run through all the tests. The new nurse practitioner in charge of my case, who is Nurse Works even though I live by grace :-P, tells me that the tests will be "rigorous." I know that I get a new echocardiogram, a new EKG, a new marrow biopsy, and some sort of test I've never heard of that checks my bones. I don't know what else there is, but I imagine there's more.
Nurse Works (who was very, very nice and professional like all Vanderbilt staff, and I don't mean any offense when I make weak puns about her name) says that it will take less than two weeks to get from the tests to transplant. They get approval from the insurance and order the cord blood, and then they zap me with radiation and chemicals.
It's a funny thought to think that they'll spend two days making sure I'm healthy enough to survive their attempts to kill me!
As one doctor once put it, chemotherapy is an attempt to poison a cancer patient and hope it kill the cancer before it kills the patient.
Hey, we're all going to get old and die anyway. We might as well rack up the experiences while we can!
The Scriptures say, "Teach us to number our days so we may present to you a heart of wisdom" (Ps. 90:12). Usually we think of that as meaning that we ought to remember how short our lives are, and I'm certain that's how Psalm 90:12 is meant. However, it seems to me that it's taken a pretty long time for these last 50 years to pass.
In the scheme of things, my 50 to ? years on this earth are really but the blink of an eye. But from my viewpoint, it seems like it's been 50 years and that I've been able to get a lot done in 50 years. If I manage to stick around 20 years or more, I can picture getting even more done. I'm a smart cookie compared to the naive, terrified, yet overconfident nut that I was in 1981.
That's all to say that I think I'm okay with going through a little chemotherapy, radiation, and Graft-versus-Host disease, though I really hope it's as easy as possible. I'm okay with being limited in my activities for a while. I'm chubby, slow, and my hips tend to hurt anyway. Due to my hips, I need about 5 times as much warmup as my sons to play sports, and after I'm warmed up, I'm twice as slow as they are. If a stem cell transplant slows me down for a few years, I suspect I'll figure out how to make it through the rest of my life just like I'm doing now.
I met a guy in California last year who has some sort of nerve problem in his upper spine. He's in pain all the time, though it's a little better because they've snipped three nerves. I can't speak for him. I've had nerve pain, as has my wife (for about two years!!), and I can't imagine living with that kind of pain.
I don't have answers for all of life. And maybe this experience will be so rough that I'll just hate it. I think, though, that God has planned out my future, and I'm fixing to go through something that is to prepare me for the rest of my life.
Sounds kind of exciting; I'm very curious how this is all going to go :-D.
One last thing because I'm trying to at least make it possible for y'all to step into my shoes and feel what this is like.
The last several days have been difficult as far as having energy. My guess is that when I get back to the hospital on Monday my red blood cell counts are going to be up significantly. The tiredness, I think, is because my body's building things. I have enough experience at a 32% hematocrit (about 2/3 of normal red blood cell level) to know that I can feel more energetic even at these blood levels.
So in response, I didn't "exercise" yesterday, in hope of letting my body recuperate or build up. I did walk down the hill to get some coffee. I walked back at a more leisurely pace, though. Judging by reactions from the hospital staff, I think even that would have been serious exercise by leukemia standards. I've worked at staying a little ahead of the game, though.
If I've learned anything going this route, I've learned that work pays off.
I ran throughout my 40's, and I wasn't very good at it. Even with carefully researched training that produced significant improvements, I was pretty slow even compared to runners older than me. I also tend to eat so much that I can gain weight even when I'm running 30 miles a week. I've had to work at controlling my eating for the last 20 years even when I've been exercising a lot.
I seem genetically constructed to respond poorly to exercise.
Nonetheless, all that exercise has paid off dramatically during the leukemia treatments.
It's the same with walking with God. I was "born again" at age 21, and I think I expected to wind up a saint, remembered by all for my godliness. I read a book for new Christians that suggested reading 10 chapters out of the Bible every day. I read 20.
Well, most days I read 20. It really only averaged about 10. I read through the Bible twice the first year I was a Christian and the New Testament two additional times. The second year I read even more. It didn't take much time before I knew the Bible better than anyone I met. Disagreeing with me was a terrible thing to do.
Knowing the Bible doesn't turn you into a saint, though. I had a terrible temper and a lot of struggles being pure of mind. I learned over the years that I'm more the kind of person that needs a lot of help than gives a lot of help.
But the effort has paid off. We don't know, of course, how I'll do through the rest of this leukemia treatment, but I've cruised through the first part filled with the grace of God and joy, both learning from others and giving joy to others.
I didn't have to be good at exercise, whether physically or spiritually, to benefit. I just had to exercise.
There's a lot of distractions in this house at the moment. I just opened a vinegar bottle for my wife, and I had to use pliers to do it. My kids are watching Monk. Janelle's making food for the Ingathering while she's doing so, and Hannah's cooking dinner.
So I don't really remember the point of all that I just wrote. Hopefully it will be a complete thought by itself, and it's more than just me rambling :-p.
I do remember that the point of this blog is that I'm excited about what's coming up and ready to experience the next half of my life however God gives it to me.
Who wants life to be normal?
I go in Thursday and Friday to run through all the tests. The new nurse practitioner in charge of my case, who is Nurse Works even though I live by grace :-P, tells me that the tests will be "rigorous." I know that I get a new echocardiogram, a new EKG, a new marrow biopsy, and some sort of test I've never heard of that checks my bones. I don't know what else there is, but I imagine there's more.
Nurse Works (who was very, very nice and professional like all Vanderbilt staff, and I don't mean any offense when I make weak puns about her name) says that it will take less than two weeks to get from the tests to transplant. They get approval from the insurance and order the cord blood, and then they zap me with radiation and chemicals.
It's a funny thought to think that they'll spend two days making sure I'm healthy enough to survive their attempts to kill me!
As one doctor once put it, chemotherapy is an attempt to poison a cancer patient and hope it kill the cancer before it kills the patient.
Hey, we're all going to get old and die anyway. We might as well rack up the experiences while we can!
The Scriptures say, "Teach us to number our days so we may present to you a heart of wisdom" (Ps. 90:12). Usually we think of that as meaning that we ought to remember how short our lives are, and I'm certain that's how Psalm 90:12 is meant. However, it seems to me that it's taken a pretty long time for these last 50 years to pass.
In the scheme of things, my 50 to ? years on this earth are really but the blink of an eye. But from my viewpoint, it seems like it's been 50 years and that I've been able to get a lot done in 50 years. If I manage to stick around 20 years or more, I can picture getting even more done. I'm a smart cookie compared to the naive, terrified, yet overconfident nut that I was in 1981.
That's all to say that I think I'm okay with going through a little chemotherapy, radiation, and Graft-versus-Host disease, though I really hope it's as easy as possible. I'm okay with being limited in my activities for a while. I'm chubby, slow, and my hips tend to hurt anyway. Due to my hips, I need about 5 times as much warmup as my sons to play sports, and after I'm warmed up, I'm twice as slow as they are. If a stem cell transplant slows me down for a few years, I suspect I'll figure out how to make it through the rest of my life just like I'm doing now.
I met a guy in California last year who has some sort of nerve problem in his upper spine. He's in pain all the time, though it's a little better because they've snipped three nerves. I can't speak for him. I've had nerve pain, as has my wife (for about two years!!), and I can't imagine living with that kind of pain.
I don't have answers for all of life. And maybe this experience will be so rough that I'll just hate it. I think, though, that God has planned out my future, and I'm fixing to go through something that is to prepare me for the rest of my life.
Sounds kind of exciting; I'm very curious how this is all going to go :-D.
One last thing because I'm trying to at least make it possible for y'all to step into my shoes and feel what this is like.
The last several days have been difficult as far as having energy. My guess is that when I get back to the hospital on Monday my red blood cell counts are going to be up significantly. The tiredness, I think, is because my body's building things. I have enough experience at a 32% hematocrit (about 2/3 of normal red blood cell level) to know that I can feel more energetic even at these blood levels.
So in response, I didn't "exercise" yesterday, in hope of letting my body recuperate or build up. I did walk down the hill to get some coffee. I walked back at a more leisurely pace, though. Judging by reactions from the hospital staff, I think even that would have been serious exercise by leukemia standards. I've worked at staying a little ahead of the game, though.
If I've learned anything going this route, I've learned that work pays off.
I ran throughout my 40's, and I wasn't very good at it. Even with carefully researched training that produced significant improvements, I was pretty slow even compared to runners older than me. I also tend to eat so much that I can gain weight even when I'm running 30 miles a week. I've had to work at controlling my eating for the last 20 years even when I've been exercising a lot.
I seem genetically constructed to respond poorly to exercise.
Nonetheless, all that exercise has paid off dramatically during the leukemia treatments.
It's the same with walking with God. I was "born again" at age 21, and I think I expected to wind up a saint, remembered by all for my godliness. I read a book for new Christians that suggested reading 10 chapters out of the Bible every day. I read 20.
Well, most days I read 20. It really only averaged about 10. I read through the Bible twice the first year I was a Christian and the New Testament two additional times. The second year I read even more. It didn't take much time before I knew the Bible better than anyone I met. Disagreeing with me was a terrible thing to do.
Knowing the Bible doesn't turn you into a saint, though. I had a terrible temper and a lot of struggles being pure of mind. I learned over the years that I'm more the kind of person that needs a lot of help than gives a lot of help.
But the effort has paid off. We don't know, of course, how I'll do through the rest of this leukemia treatment, but I've cruised through the first part filled with the grace of God and joy, both learning from others and giving joy to others.
I didn't have to be good at exercise, whether physically or spiritually, to benefit. I just had to exercise.
There's a lot of distractions in this house at the moment. I just opened a vinegar bottle for my wife, and I had to use pliers to do it. My kids are watching Monk. Janelle's making food for the Ingathering while she's doing so, and Hannah's cooking dinner.
So I don't really remember the point of all that I just wrote. Hopefully it will be a complete thought by itself, and it's more than just me rambling :-p.
I do remember that the point of this blog is that I'm excited about what's coming up and ready to experience the next half of my life however God gives it to me.
Who wants life to be normal?
Monday, September 26, 2011
Passed the Blood Test and Tennis
I passed the blood test today. I'm officially moved to priority status, which means the transplant team gets to start scheduling me. They're supposed to call me some time this week. Meg, the informative nurse practitioner, tells me they probably won't schedule anything until next week.
That's nice. I'll get to go to the Ingathering, which is the primary yearly festival at Rose Creek Village, where I live when I'm not being treated for acute leukemia.
My white blood cell count is 6.8, and my neutrophil count is at 5250, which is smack dab in the middle of normal range. My platelets are up to 178, which means I have a normal level of blood clotting ability, too.
And that means I can run and play tennis!
Unfortunately, my red blood cell counts are not up much. I'm running at about 2/3 full on those, which means I can only process oxygen at 2/3 normal level. That means my running and tennis endurance is pretty pitiful. Sad ...
That's not to say I'm not trying!
This morning I got up at 6 a.m. It was a struggle to feel energetic, which I suspect has a lot to do with the fact that I went to bed at 4 a.m. I got started on a web page about the problems with "Drive By Posting" in evolution vs. creation discussions, and I wrote on the subject for about 5 hours. We had driven home from Rose Creek Village yesterday, so I didn't get started on the page until about 10 pm.
I had company, too. My wife was up until at least 3 am working on her computer to set it up for composing songs. We did all this at the table, while Caleb snoozed on the couch less than 10 feet away, the only bed he gets in this 2-bedroom apartment provided by the kindness of "Open Arms,"
After my doctor's appointment this morning, I took a nap for about three hours, but I still felt terribly lacking in energy.
So I did the only thing I could think of to do in such a situation.
I took the kids to the weight room, and I did a full workout for about half an hour, followed by 5 minutes on the elliptical machine, which is as hard as jogging.
I was pumped. I felt great, but I still feel like a guy with 2/3 of the blood he's supposed to have.
So, next step. Take the kids to play tennis. It's a beautiful day, and I'm sitting outside, typing on the computer in a lawn chair, under a tree ...
Well, not anymore. My turn to play tennis came, and now we're back, and I'm sitting in the living room. I beat Caleb 6-2. In a sense, that's a great accomplishment because he can run significantly faster than me. In fact, if I remember correctly, he could outrun me when he was 11, which is very sad. On the other hand, it's not much of an accomplishment because it's the third time he's ever played.
A few days ago I realized I hadn't called Don in quite a while. He got an autologous (from himself) stem cell transplant while I was in the hospital. He was released the day after his transplant, but he got a bad stomach infection and wound up back in the hospital for a week or so.
Then we had lunch with him a couple weeks later, and he was chipper, but he didn't look real healthy. He was still neutropenic (at risk of infection), and he had to wear a hospital mask into the restaurant, though he took it off to eat.
So I called him ... and he didn't answer.
I went in and told my wife, "I hope he's not dead!"
Fortunately, he called me back an hour or so later, and he's not only not dead, but he's healthy. I should have known because a lot of y'all prayed for him. In fact, I thought of that, and your prayers were the most comforting thing I could think of while I was worrying about him.
So today the shoe was on the other foot.
Jerry sent me a text yesterday while we were driving back to Nashville. He said that he had spots all over his body, and he thinks he was bleeding because his platelets were low.
He's one week behind me on chemo, and on Thursday his platelet count was 18. Just to remind you, the low end of normal is 150. Eighteen is terrible, but the hospital doesn't give platelets to leukemia patients until they get down to 10.
The problem is, Jerry wasn't going to get his blood counts checked again until Monday. That's 4 days, and he was already at 18, which was down from around 90 three days earlier.
So as it turned out, his platelet count got down to 4, and basically he was leaking all over his body. That's frightening.
Anyway, he's okay. They gave him platelets today.
But he didn't know I was okay because I forgot to answer his text. I was driving back from Rose Creek Village when I got it. Then I got home, and we got settled in, and I spent most of the night typing up a web page. I went to the hospital, and we were in and out in not much over half an hour. When I got home, I'd only had 2 hours of sleep, so I took a nap from 8:30 to 11:30, and I missed another one of Jerry's text.
So at 11:30 I got a call from Jerry making sure I was okay.
When your friends have deadly diseases and a hospital is regularly administering powerfully toxic chemicals to them on a regular basis, you worry when they don't answer the phone.
I feel like I hit that 70-year-old, compare-your-aches-and-pains state about 20 years too early!
So tomorrow I pass my final test, the dental exam, and then wait around for calls from the transplant team. Meg tells me my blood counts are good enough that she canceled my Thursday blood counts.
Remember finals in high school and college? I never pictured having finals that included a blood test and a dental exam!
Good day to all of you.
My white blood cell count is 6.8, and my neutrophil count is at 5250, which is smack dab in the middle of normal range. My platelets are up to 178, which means I have a normal level of blood clotting ability, too.
And that means I can run and play tennis!
Unfortunately, my red blood cell counts are not up much. I'm running at about 2/3 full on those, which means I can only process oxygen at 2/3 normal level. That means my running and tennis endurance is pretty pitiful. Sad ...
This morning I got up at 6 a.m. It was a struggle to feel energetic, which I suspect has a lot to do with the fact that I went to bed at 4 a.m. I got started on a web page about the problems with "Drive By Posting" in evolution vs. creation discussions, and I wrote on the subject for about 5 hours. We had driven home from Rose Creek Village yesterday, so I didn't get started on the page until about 10 pm.
I had company, too. My wife was up until at least 3 am working on her computer to set it up for composing songs. We did all this at the table, while Caleb snoozed on the couch less than 10 feet away, the only bed he gets in this 2-bedroom apartment provided by the kindness of "Open Arms,"
After my doctor's appointment this morning, I took a nap for about three hours, but I still felt terribly lacking in energy.
So I did the only thing I could think of to do in such a situation.
I took the kids to the weight room, and I did a full workout for about half an hour, followed by 5 minutes on the elliptical machine, which is as hard as jogging.
I was pumped. I felt great, but I still feel like a guy with 2/3 of the blood he's supposed to have.
Well, not anymore. My turn to play tennis came, and now we're back, and I'm sitting in the living room. I beat Caleb 6-2. In a sense, that's a great accomplishment because he can run significantly faster than me. In fact, if I remember correctly, he could outrun me when he was 11, which is very sad. On the other hand, it's not much of an accomplishment because it's the third time he's ever played.
The World of Fellow Leukemia/Lymphoma Patients
A few days ago I realized I hadn't called Don in quite a while. He got an autologous (from himself) stem cell transplant while I was in the hospital. He was released the day after his transplant, but he got a bad stomach infection and wound up back in the hospital for a week or so.
Then we had lunch with him a couple weeks later, and he was chipper, but he didn't look real healthy. He was still neutropenic (at risk of infection), and he had to wear a hospital mask into the restaurant, though he took it off to eat.
So I called him ... and he didn't answer.
I went in and told my wife, "I hope he's not dead!"
Fortunately, he called me back an hour or so later, and he's not only not dead, but he's healthy. I should have known because a lot of y'all prayed for him. In fact, I thought of that, and your prayers were the most comforting thing I could think of while I was worrying about him.
So today the shoe was on the other foot.
 |
| Nice shot that either Leilani or Manuha took. |
He's one week behind me on chemo, and on Thursday his platelet count was 18. Just to remind you, the low end of normal is 150. Eighteen is terrible, but the hospital doesn't give platelets to leukemia patients until they get down to 10.
So as it turned out, his platelet count got down to 4, and basically he was leaking all over his body. That's frightening.
Anyway, he's okay. They gave him platelets today.
But he didn't know I was okay because I forgot to answer his text. I was driving back from Rose Creek Village when I got it. Then I got home, and we got settled in, and I spent most of the night typing up a web page. I went to the hospital, and we were in and out in not much over half an hour. When I got home, I'd only had 2 hours of sleep, so I took a nap from 8:30 to 11:30, and I missed another one of Jerry's text.
So at 11:30 I got a call from Jerry making sure I was okay.
When your friends have deadly diseases and a hospital is regularly administering powerfully toxic chemicals to them on a regular basis, you worry when they don't answer the phone.
I feel like I hit that 70-year-old, compare-your-aches-and-pains state about 20 years too early!
So tomorrow I pass my final test, the dental exam, and then wait around for calls from the transplant team. Meg tells me my blood counts are good enough that she canceled my Thursday blood counts.
Remember finals in high school and college? I never pictured having finals that included a blood test and a dental exam!
Good day to all of you.
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