Fortunately, my wife wrote an update, too, so there's on less thing to write about.
Yesterday I was busy doing things worth writing about. Today, I'm writhing in pain, and it's difficult to find time or place to type. I have opted for now, mid-afternoon, standing up at little rolling table they provide for meals. It raises up high enough that I can type standing.
Friday night I was up most of the night with insomnia, caused either by the chemotherapy or the coke I drank after the spinal tap. I was trying to follow instructions I had received from a friend in Ireland for what to do after the spinal tap. He had been given a coke, so I asked for one.
Maybe it helped. Thank God that today there's no headaches, so I'm able to stand up.
I'm not sure why this spinal tap, which should have made the headaches worse, has resulted in no headaches. I'm sure it's partly because I did things as exactly right as possible after the procedure, but I'm chalking it up to everyone's prayers. Thank you so much, all of you.
Saturday morning (yesterday), I had one of the most delightful mornings ever. I talked with the lady who delivers our breakfast trays for at least an hour. She's a former drug addict who's cleaned up her life and become a Christian. She runs a home for mentally ill—disabled but functional—women here in Nashville. We talked and enjoyed one another's company. I got some friends to help with Christmas presents for the ladies in her home, and we made arrangements for me to visit here and there. I've been asking God for the opportunity to serve him here in Nashville somehow, and that's a great way.
We got to talking because she saw a copy of my book sitting out in my room. I had it out to give to a nurse who had asked about my book. When I gave her a signed copy she told me it made her weekend, and she promised to go to church the next day (which is today). It was fun. That nurse is Margie, and she's a blast. She's one of my favorite nurses here; we've had some pretty interesting conversations at times.
After all that, I got to talk to another one of the care partners, who told me about some struggles going on in her life and how she handles them. It was very encouraging. If you don't mind, take a moment and pray for her son, who is in jail, that God would turn his life around.
So the morning was beautiful, and my kids, my parents, and my brother came to visit in the afternoon. It was a great day.
By evening I decided it would be a bad idea to stay up most of another night. I got a lot done staying up Friday night, including a blog post on evolution and a podcast.
Last night, though, I figured I'd better get some sleep, so they gave me something called Adavan (sp?). It really helped for sleeping. The problem is, I woke up at 4 a.m. with pain in my hips, which immediately developed into a mean case of sciatica in both legs.
For those of you that don't know what sciatica is, give thanks to God. It's shooting nerve pains down your hip or legs. It comes from something happening to the sciatic nerve, and it's a common problem among human beings, especially if you work in an office.
I've been doing all sorts of things to deal with the pain. I've laid on the floor on a yoga mat on my back. I've done trigger point therapy. I'm on 10 mg of oxycodon at the moment. For a while it was really under control well, especially at the height of the previous dose of oxycodon. It's kicked back up now. They came in to take my vitals, and my blood pressure was 164/90 due to the pain. My heart rate is up from its typical 68 to 90.
The nurse just ran me through a couple of tests, and she's going to get a doctor, so I better wrap this up.
Thank God that there's no spinal headaches. I don't know how I'd deal with both! Walking helps a little with this sciatica.
Better go. Thanks everyone!
Sunday, October 23, 2011
Friday, October 21, 2011
October 21: Day 3
So this has been a great day.
In the morning, I asked about a getting a blood patch to take care of the spinal tap leak that I must have. Dr. Greer told me that it's a very good idea to do a spinal tap and a blood patch at the same time. They really need to check my fluid and make sure that it's clear of leukemia, and they may not be able to do that next week when my blood counts get low. When you don't have platelets to clot nor neutrophils to fight infections, then it's good to avoid even very minor surgery like a spinal tap.
However, he said, that call was not up to him but to the radiology doctor. He said he'd ask.
Later in the morning I saw dry, flaky skin on the side of my nose. Oddly enough, that was really good news for me.
I realized that I had moved from good ol' humid Tennessee weather into arid, microbial-unfriendly hospital air. It's just the sort of environment which would give me sinus headaches after hours of sleeping. Long experience tells me that sinus headaches feel a lot like caffeine headaches which feel a little like low-spinal-fluid headaches. Spinal-fluid headaches, for me, navigate to the back of the head and neck as they get stronger. That doesn't happen with caffeine headaches and certainly not with sinus headaches.
Anyway, the reason that is good news is that I'm pretty sure the early morning headaches are sinus headaches, not spinal tap headaches. This means laying down still relieves the spinal headaches, which I was doubting. I thought I was consigned to having headaches whether I laid down or not.
So, if I get a headache laying down, the treatment is hot water in a cup. Breathe the steam, headache will go away. If I get a headache standing up, lay down.
That will get me through to Monday, which brings us back to what the radiologist said.
The radiologist said he can't do a spinal tap and blood patch at the same time. He said a few days need to pass, and he hopes he can do it Monday. I don't think fast enough to think of asking why Monday's a maybe. I just took that as an answer, as foolish as that is. On Tuesday, they may not be able to do a blood patch.
Oh, if you haven't read already on this blog, a blood patch is where they inject your own blood into or near (I don't know which) the hole from the spinal tap, and the clotting factors in the blood seal the hole.
The problem is that Dr. Greer estimates that by Tuesday or Wednesday my clotting factors will probably be too low to be of much worth.
So Monday would be really good.
Or maybe because I'm doing everything right this time, laying around for hours, the hole (or holes, in case the previous ones haven't healed) will heal up by Monday and there won't be an issue.
Either way, I'm in really good spirits, delighted that I'm not going to be enduring very unpleasant headaches for the next few days.
Anyway, they did the spinal tap this afternoon, in some hope that it would be clear of leukemic cells. I just checked my clinical record, and I don't have those results listed yet. I also forgot to ask when we would know. I'll ask the resident tomorrow morning on rounds. Vanderbilt has a web site for patients to check on their on test results, though not all of them show up. Some don't show up at all, due to being too complicated, and others don't show up until a doctor's review. The spinal tap results do show, but they're either not ready yet or they have to await doctor's review.
On top of the good headache news, I also read through the scrapbook from my 50th birthday. It was only ready a couple weeks ago, and I saved it for when I got in the hospital. I read it this morning, and I'll admit I cried ... a lot. It was, uh ... delightful. Shoot, that's an understatement.
So this has been one of the best days I've had in a long time.
Well, easiest. Dark days are not bad days. You know the scoop ... "All things work together for good ... "
 |
| Been doing a lot of this lately |
However, he said, that call was not up to him but to the radiology doctor. He said he'd ask.
Later in the morning I saw dry, flaky skin on the side of my nose. Oddly enough, that was really good news for me.
I realized that I had moved from good ol' humid Tennessee weather into arid, microbial-unfriendly hospital air. It's just the sort of environment which would give me sinus headaches after hours of sleeping. Long experience tells me that sinus headaches feel a lot like caffeine headaches which feel a little like low-spinal-fluid headaches. Spinal-fluid headaches, for me, navigate to the back of the head and neck as they get stronger. That doesn't happen with caffeine headaches and certainly not with sinus headaches.
Anyway, the reason that is good news is that I'm pretty sure the early morning headaches are sinus headaches, not spinal tap headaches. This means laying down still relieves the spinal headaches, which I was doubting. I thought I was consigned to having headaches whether I laid down or not.
So, if I get a headache laying down, the treatment is hot water in a cup. Breathe the steam, headache will go away. If I get a headache standing up, lay down.
That will get me through to Monday, which brings us back to what the radiologist said.
The radiologist said he can't do a spinal tap and blood patch at the same time. He said a few days need to pass, and he hopes he can do it Monday. I don't think fast enough to think of asking why Monday's a maybe. I just took that as an answer, as foolish as that is. On Tuesday, they may not be able to do a blood patch.
Oh, if you haven't read already on this blog, a blood patch is where they inject your own blood into or near (I don't know which) the hole from the spinal tap, and the clotting factors in the blood seal the hole.
The problem is that Dr. Greer estimates that by Tuesday or Wednesday my clotting factors will probably be too low to be of much worth.
 |
| The sky from Vanderbilt |
Or maybe because I'm doing everything right this time, laying around for hours, the hole (or holes, in case the previous ones haven't healed) will heal up by Monday and there won't be an issue.
Either way, I'm in really good spirits, delighted that I'm not going to be enduring very unpleasant headaches for the next few days.
Anyway, they did the spinal tap this afternoon, in some hope that it would be clear of leukemic cells. I just checked my clinical record, and I don't have those results listed yet. I also forgot to ask when we would know. I'll ask the resident tomorrow morning on rounds. Vanderbilt has a web site for patients to check on their on test results, though not all of them show up. Some don't show up at all, due to being too complicated, and others don't show up until a doctor's review. The spinal tap results do show, but they're either not ready yet or they have to await doctor's review.
On top of the good headache news, I also read through the scrapbook from my 50th birthday. It was only ready a couple weeks ago, and I saved it for when I got in the hospital. I read it this morning, and I'll admit I cried ... a lot. It was, uh ... delightful. Shoot, that's an understatement.
So this has been one of the best days I've had in a long time.
Well, easiest. Dark days are not bad days. You know the scoop ... "All things work together for good ... "
October 20 Update
Reporting live from Vanderbilt Medical Center ...
I got the scoop from Dr. Greer this morning as to the exact purpose of this extra round of chemotherapy. Once they found the blasts (immature blood cells that are indicative of leukemia cells) in my spinal fluid, they wanted to treat me with a chemotherapy that would hit the entire central nervous system.
Cytarabine, also called Ara-C, crosses the blood-brain barrier, so it's the chemo of choice for this round. I get two doses a day for six days, and then I'm done. They'll do another spinal tap afterward to make sure the blasts are gone, and then it's back to the transplant team.
Six days, however, means six days to receive the dosage. Then there's a week for it to churn around in my body, then at least a week for my blood counts to recover. So this is a three-week trip minimum.
In face-to-face interactions, I have a goal of being a blessing to people. I want each interaction with me to result in a little more power to them to live life the way God made them to live it. That doesn't mean that I know specifically how God wants each person to live, nor does it mean that I necessarily have any advice for them. It just means that I want them to walk away more empowered by being more hopeful, less concerned about themselves, more trusting of God, and more joyful.
Mostly, that just means being me and enjoying people, but also remembering that life isn't about me. How I'm doing, in most cases, really doesn't matter.
On this blog, however, the goal is not the same. The goal is to write in such a way that people get to experience this with me as much as they want to do so. Maybe you'll have to go through something similar to this some day. Maybe you know someone who is going through something like this or who will. I'm trying to let you experience it, not just tell you about it, in the hope that it will help you or someone else in the future.
So I'm making sure to include the worries and unpleasant feelings. Please don't worry about me! I'm doing great! I have lots of friends and lots of encouragement; so much so, in fact, that I barely have time to write these blogs.
If you want to give me words of encouragement, that's great. Encouragement and kindness is wonderful even when I'm doing good. But please don't read the following and think I'm doing terrible. I'm just telling you what the route to continuing to do great feels like, and it doesn't always feel, well, great.
The headaches from the spinal tap are apparently wearing me out. A couple nights ago I had my first bout ever of insomnia where I felt really tired but couldn't sleep. Before then, I've only had insomnia in which I just wasn't tired. Those nights, I can get up and do something, and usually I feel just fine the next day.
Not only was I tired but I felt miserable, sort of dark and hopeless. I got to wondering about whether I was going to die, and there was nothing pleasant about the thought. I was awake for a couple hours in the middle of the night feeling that way.
I've learned from experience that you don't have to give in to how you feel. If you want to be a Christian, then sometimes you have to do what's right even when you don't feel like doing it. "Rejoice" is actually a command in the Bible, and although there are times sharing tears, there are also times when we should rejoice even though we don't feel like doing so.
Just because I feel despairing doesn't mean that I have to be despairing.
I don't know about you, but my brain is capable of doing all sorts of negative thinking on its own. Suspicious thoughts, fearful thoughts, worrisome thoughts ... they all flow right through with no effort on my part. But it's my choice whether I'm going to pay attention to those thoughts or not.
The other night, it took me a little while to decide what to think about so that I wasn't thinking about all the doom and gloom that was surrounding my brain. Once I got my mind off the negative stuff—which didn't take long because it quickly seemed useless to think about those things—I felt like God was telling me I should start praying for everyone I know.
So I did. It got tiring after a little while, but I really felt like God was urging me to continue; that he really wanted me to get to one particular person.
Apparently I got to that person, because after praying for him, I felt comfortable just shutting my mind down and going to sleep.
I woke up in the morning—I think this was two mornings ago—just as miserable as when I went to sleep in the middle of the night. Mornings, however, are really easy. I just get up and go spend time with all the wonderful people I love, and those miserable, dark feelings evaporate.
It wasn't much different when I checked into the hospital.
Yesterday, I had a dentist appointment at 12:30. I went straight from there to lunch, where the headache from sitting up got pretty painful. I rushed back to the car so I could lay down, then from the car to the waiting room to lay down again. Fortunately, the first thing to be done was to get a PICC line put in. The PICC line is a small tube that goes from my upper arm through a vein into the "vena cava," the large vein right above the heart. Since the PICC line goes in on the inner part of the upper arm, it's put in while I'm laying down. That took a little while, and it was a big relief for my headache.
The whole time that was going on, however, my brain wanted to think about the people that don't make it. I think at one point I saw a news item on Iraq, and I thought about all the young people who lost their lives defending our freedoms. That should be an inspiring thought, but my brain wanted to focus on dying, not the life that dying brings.
Again, if I leaned into every miserable thing that my brain has ever suggested I think about, I would have already lived a pretty miserable life. I'm not interested in that, so I just went about all the busy things we had to do yesterday. It didn't help that I had a headache pretty much all the time that I was standing.
Now, mind you, I'm writing all this, and I didn't tell anyone about any of this. To me, those sort of thoughts don't have the right to be reported. If I'm not going to pay attention to such thoughts myself, why would I ask others to pay attention to them? You could have spent the whole day with me yesterday, and I would never have said anything ... except that laying down to get rid of the headache was really nice.
Not long after they got me in my room, I fell asleep and slept the entire evening. The nurses kept waking me up for this or that, which was difficult, but by late evening I was even sleeping through the blood pressure checks.
Anyway, I woke up this morning—really early from sleeping all evening—and walked and rode the exercise bike. I felt great, and all that crazy stuff in my mind is gone. No misery, no darkness, no thoughts about dying.
It's been nice seeing all the nurses and aides again, even though it's not your typical "reunion" circumstances.
Oh, and for those of you who know that the spinal tap headaches need to be treated, we're going to talk with the doctor in the morning about doing a "blood patch." If the problem is that my spinal fluid is still leaking, they will take some of my blood and inject it. Then my blood's own clotting factors, which are still okay at the moment, seal the leak.
I know this isn't the most fun post I've had. Things are better than they sound. Friends visited today from Rose Creek Village, and we got to talk and pray together. My brother was here a lot of the day. It's been a great day. Yesterday was difficult, but no one's guaranteed one wonderful day after the other. Being brave and making good choices is simply part of living on earth, and it's the pressing through those days that lets us be ready to enjoy the easy ones.
 |
| Dr. Greer, whose gray hairs are definitely an indicator of wisdom. |
Cytarabine, also called Ara-C, crosses the blood-brain barrier, so it's the chemo of choice for this round. I get two doses a day for six days, and then I'm done. They'll do another spinal tap afterward to make sure the blasts are gone, and then it's back to the transplant team.
Six days, however, means six days to receive the dosage. Then there's a week for it to churn around in my body, then at least a week for my blood counts to recover. So this is a three-week trip minimum.
Read with Care
In face-to-face interactions, I have a goal of being a blessing to people. I want each interaction with me to result in a little more power to them to live life the way God made them to live it. That doesn't mean that I know specifically how God wants each person to live, nor does it mean that I necessarily have any advice for them. It just means that I want them to walk away more empowered by being more hopeful, less concerned about themselves, more trusting of God, and more joyful.
Mostly, that just means being me and enjoying people, but also remembering that life isn't about me. How I'm doing, in most cases, really doesn't matter.
On this blog, however, the goal is not the same. The goal is to write in such a way that people get to experience this with me as much as they want to do so. Maybe you'll have to go through something similar to this some day. Maybe you know someone who is going through something like this or who will. I'm trying to let you experience it, not just tell you about it, in the hope that it will help you or someone else in the future.
So I'm making sure to include the worries and unpleasant feelings. Please don't worry about me! I'm doing great! I have lots of friends and lots of encouragement; so much so, in fact, that I barely have time to write these blogs.
If you want to give me words of encouragement, that's great. Encouragement and kindness is wonderful even when I'm doing good. But please don't read the following and think I'm doing terrible. I'm just telling you what the route to continuing to do great feels like, and it doesn't always feel, well, great.
Dark Nights and Painful Days
The headaches from the spinal tap are apparently wearing me out. A couple nights ago I had my first bout ever of insomnia where I felt really tired but couldn't sleep. Before then, I've only had insomnia in which I just wasn't tired. Those nights, I can get up and do something, and usually I feel just fine the next day.
Not only was I tired but I felt miserable, sort of dark and hopeless. I got to wondering about whether I was going to die, and there was nothing pleasant about the thought. I was awake for a couple hours in the middle of the night feeling that way.
I've learned from experience that you don't have to give in to how you feel. If you want to be a Christian, then sometimes you have to do what's right even when you don't feel like doing it. "Rejoice" is actually a command in the Bible, and although there are times sharing tears, there are also times when we should rejoice even though we don't feel like doing so.
Just because I feel despairing doesn't mean that I have to be despairing.
I don't know about you, but my brain is capable of doing all sorts of negative thinking on its own. Suspicious thoughts, fearful thoughts, worrisome thoughts ... they all flow right through with no effort on my part. But it's my choice whether I'm going to pay attention to those thoughts or not.
The other night, it took me a little while to decide what to think about so that I wasn't thinking about all the doom and gloom that was surrounding my brain. Once I got my mind off the negative stuff—which didn't take long because it quickly seemed useless to think about those things—I felt like God was telling me I should start praying for everyone I know.
So I did. It got tiring after a little while, but I really felt like God was urging me to continue; that he really wanted me to get to one particular person.
Apparently I got to that person, because after praying for him, I felt comfortable just shutting my mind down and going to sleep.
I woke up in the morning—I think this was two mornings ago—just as miserable as when I went to sleep in the middle of the night. Mornings, however, are really easy. I just get up and go spend time with all the wonderful people I love, and those miserable, dark feelings evaporate.
It wasn't much different when I checked into the hospital.
Yesterday, I had a dentist appointment at 12:30. I went straight from there to lunch, where the headache from sitting up got pretty painful. I rushed back to the car so I could lay down, then from the car to the waiting room to lay down again. Fortunately, the first thing to be done was to get a PICC line put in. The PICC line is a small tube that goes from my upper arm through a vein into the "vena cava," the large vein right above the heart. Since the PICC line goes in on the inner part of the upper arm, it's put in while I'm laying down. That took a little while, and it was a big relief for my headache.
The whole time that was going on, however, my brain wanted to think about the people that don't make it. I think at one point I saw a news item on Iraq, and I thought about all the young people who lost their lives defending our freedoms. That should be an inspiring thought, but my brain wanted to focus on dying, not the life that dying brings.
Again, if I leaned into every miserable thing that my brain has ever suggested I think about, I would have already lived a pretty miserable life. I'm not interested in that, so I just went about all the busy things we had to do yesterday. It didn't help that I had a headache pretty much all the time that I was standing.
Now, mind you, I'm writing all this, and I didn't tell anyone about any of this. To me, those sort of thoughts don't have the right to be reported. If I'm not going to pay attention to such thoughts myself, why would I ask others to pay attention to them? You could have spent the whole day with me yesterday, and I would never have said anything ... except that laying down to get rid of the headache was really nice.
Not long after they got me in my room, I fell asleep and slept the entire evening. The nurses kept waking me up for this or that, which was difficult, but by late evening I was even sleeping through the blood pressure checks.
Anyway, I woke up this morning—really early from sleeping all evening—and walked and rode the exercise bike. I felt great, and all that crazy stuff in my mind is gone. No misery, no darkness, no thoughts about dying.
Wrap Up
It's been nice seeing all the nurses and aides again, even though it's not your typical "reunion" circumstances.
Oh, and for those of you who know that the spinal tap headaches need to be treated, we're going to talk with the doctor in the morning about doing a "blood patch." If the problem is that my spinal fluid is still leaking, they will take some of my blood and inject it. Then my blood's own clotting factors, which are still okay at the moment, seal the leak.
I know this isn't the most fun post I've had. Things are better than they sound. Friends visited today from Rose Creek Village, and we got to talk and pray together. My brother was here a lot of the day. It's been a great day. Yesterday was difficult, but no one's guaranteed one wonderful day after the other. Being brave and making good choices is simply part of living on earth, and it's the pressing through those days that lets us be ready to enjoy the easy ones.
Tuesday, October 18, 2011
October 18: Preparing to Return to Vanderbilt
Well, it's back to the hospital for another round of chemotherapy tomorrow.
It appears that finding blasts in my spinal fluid surprised the doctors a bit. The transplant team dropped me and sent me back to Dr. Strickland. I understand it's for just one more round of chemo.
Dr. Jagasian (of the transplant team) explained that it matters how much my leukema "knows how" to get out of my blood. Obviously, my leukemia was pretty good at it because it got into my skin, into my lymph nodes, and into my spleen. The chemotherapy took care of all that, but when we started the transplant process, he also wanted to make sure it hadn't made its way into my spinal fluid.
It had.
If I understand correctly, which I think I do, the spinal fluid is on the other side of the blood/brain barrier. Your body is very protective of your brain, so the blood vessels that go to the brain do not have unrestricted access to the brain. There's a "barrier" of cells that nutrients and oxygen have to go through to get to the brain.
As a result, it is not only difficult for pathogens to make it to the brain, but it is also difficult for medicines to make it to the brain.
The spinal fluid is the same fluid that is around the brain, which is why my spinal taps last week have been giving me headaches whenever I sit up or stand up. I believe that spinal fluid is on the brain side of the blood/brain barrier. Thus, it should have been difficult for the leukemia cells to make it into that fluid, and once it did, the chemotherapy, which also can't penetrate the barrier, didn't reach those cells.
So they poked a hole in my spine and stuck medicine directly in that fluid.
When they do that, it leaves a needle-sized hole, which takes from 1 to 7 days to heal. Sometimes there's some leaking, and if the fluid around the brain gets low, you get awful headaches.
I've been having those for a week, though laying down makes them completely go away.
I have a friend in Ireland, a "pen pal" if you will, who had Blastic Plasmacytoid Dendritic Cell Neoplasm and spent 191 days in the hospital. He wrote me and told me that when he got his spinal tap (he had 6), they made him lay down for six hours afterward. He wasn't even allowed to get up for the bathroom. (Bottle was provided instead.)
Me?
Last Monday, when they did the first spinal tap, they said bye and I left. I went from there to an appointment in the Urology clinic to talk about whether to do a biopsy for potential prostate cancer. By the time we were out of that crowded clinic, we had to hurry to Caleb's soccer practice. When we got there, it turned out the practice was at 7 pm rather than 5:30. We hung out by the car and talked, and then I watched his practice for two hours, alternately sitting on a cold, metal bench and walking around.
We got home around 10 pm, 8 hours after the spinal tap, and I hadn't laid down once.
So the next day I had headaches, and the day after that I had headaches and nausea. Still, no one told me that if I would spend a lot of time laying down the hole in my spinal column would heal faster. They did, however, tell me to drink a lot of water, which is helpful.
Only on Thursday afternoon, when I had a second spinal tap, did the doctor tell me I needed to lay down.
Still, they didn't leave me there to lay down. I drove home, meaning I waited outside for valet parking to deliver the car, then rode for 15 minutes. It was at least half an hour before I laid down at all.
Last night, after laying around pretty much all day Friday, Saturday, and Sunday (well, except for some walking on Friday and Saturday morning), I tried to go out to eat with my family. It really didn't work. Despite some hydrocodone and some nausea medicine, there reached a point where I couldn't both bear the headache and look at the food. Fortunately, it wasn't real crowded, so with some prompting from my wife, I laid down in an empty booth, somewhat worried about what the O'Charley's employees would think. Haviylah (a friend) and my wife assured me they'd take care of the employees.
After a bit I tried to get back to the table, but it didn't work. I ended up laying in the back of the car until they were done. Of course, the laying down was a such a relief of the headache that the wait was very pleasant.
It seems better this morning, so I'm trying to get a couple things done. I answered some emails, and now I'm getting this blog done, and I only have the mildest headache; not bad at all.
Okay, one final thing. I forgot to complete a thought up above.
I think when they found out that the leukemia crossed the blood/brain barrier into the spinal fluid, they weren't satisfied with one induction round and one consolidation round of chemotherapy. They sent me back to Dr. Strickland for another round. I think this is the last round, and they're going to give me one more spinal tap, too. We'll see.
Judging by the urgency to get me in the hospital, I suspect it's going to be a pretty decent dose of chemo. They talked about canceling my dental appointment tomorrow if it interfered with the admissions process. As it turns out, they're not going to cancel the dental appointment, but their willingness to do so indicates some urgency on their part to get me in.
So, next round begins Thursday, and I'll be admitted tomorrow afternoon, right after the dental appointment.
I need to go lay down :-), so no pictures again today.
It appears that finding blasts in my spinal fluid surprised the doctors a bit. The transplant team dropped me and sent me back to Dr. Strickland. I understand it's for just one more round of chemo.
Dr. Jagasian (of the transplant team) explained that it matters how much my leukema "knows how" to get out of my blood. Obviously, my leukemia was pretty good at it because it got into my skin, into my lymph nodes, and into my spleen. The chemotherapy took care of all that, but when we started the transplant process, he also wanted to make sure it hadn't made its way into my spinal fluid.
It had.
If I understand correctly, which I think I do, the spinal fluid is on the other side of the blood/brain barrier. Your body is very protective of your brain, so the blood vessels that go to the brain do not have unrestricted access to the brain. There's a "barrier" of cells that nutrients and oxygen have to go through to get to the brain.
As a result, it is not only difficult for pathogens to make it to the brain, but it is also difficult for medicines to make it to the brain.
The spinal fluid is the same fluid that is around the brain, which is why my spinal taps last week have been giving me headaches whenever I sit up or stand up. I believe that spinal fluid is on the brain side of the blood/brain barrier. Thus, it should have been difficult for the leukemia cells to make it into that fluid, and once it did, the chemotherapy, which also can't penetrate the barrier, didn't reach those cells.
So they poked a hole in my spine and stuck medicine directly in that fluid.
When they do that, it leaves a needle-sized hole, which takes from 1 to 7 days to heal. Sometimes there's some leaking, and if the fluid around the brain gets low, you get awful headaches.
I've been having those for a week, though laying down makes them completely go away.
I have a friend in Ireland, a "pen pal" if you will, who had Blastic Plasmacytoid Dendritic Cell Neoplasm and spent 191 days in the hospital. He wrote me and told me that when he got his spinal tap (he had 6), they made him lay down for six hours afterward. He wasn't even allowed to get up for the bathroom. (Bottle was provided instead.)
Me?
Last Monday, when they did the first spinal tap, they said bye and I left. I went from there to an appointment in the Urology clinic to talk about whether to do a biopsy for potential prostate cancer. By the time we were out of that crowded clinic, we had to hurry to Caleb's soccer practice. When we got there, it turned out the practice was at 7 pm rather than 5:30. We hung out by the car and talked, and then I watched his practice for two hours, alternately sitting on a cold, metal bench and walking around.
We got home around 10 pm, 8 hours after the spinal tap, and I hadn't laid down once.
So the next day I had headaches, and the day after that I had headaches and nausea. Still, no one told me that if I would spend a lot of time laying down the hole in my spinal column would heal faster. They did, however, tell me to drink a lot of water, which is helpful.
Only on Thursday afternoon, when I had a second spinal tap, did the doctor tell me I needed to lay down.
Still, they didn't leave me there to lay down. I drove home, meaning I waited outside for valet parking to deliver the car, then rode for 15 minutes. It was at least half an hour before I laid down at all.
Last night, after laying around pretty much all day Friday, Saturday, and Sunday (well, except for some walking on Friday and Saturday morning), I tried to go out to eat with my family. It really didn't work. Despite some hydrocodone and some nausea medicine, there reached a point where I couldn't both bear the headache and look at the food. Fortunately, it wasn't real crowded, so with some prompting from my wife, I laid down in an empty booth, somewhat worried about what the O'Charley's employees would think. Haviylah (a friend) and my wife assured me they'd take care of the employees.
After a bit I tried to get back to the table, but it didn't work. I ended up laying in the back of the car until they were done. Of course, the laying down was a such a relief of the headache that the wait was very pleasant.
It seems better this morning, so I'm trying to get a couple things done. I answered some emails, and now I'm getting this blog done, and I only have the mildest headache; not bad at all.
Okay, one final thing. I forgot to complete a thought up above.
I think when they found out that the leukemia crossed the blood/brain barrier into the spinal fluid, they weren't satisfied with one induction round and one consolidation round of chemotherapy. They sent me back to Dr. Strickland for another round. I think this is the last round, and they're going to give me one more spinal tap, too. We'll see.
Judging by the urgency to get me in the hospital, I suspect it's going to be a pretty decent dose of chemo. They talked about canceling my dental appointment tomorrow if it interfered with the admissions process. As it turns out, they're not going to cancel the dental appointment, but their willingness to do so indicates some urgency on their part to get me in.
So, next round begins Thursday, and I'll be admitted tomorrow afternoon, right after the dental appointment.
I need to go lay down :-), so no pictures again today.
Saturday, October 15, 2011
October 15: Having a Great Weekend
As it turns out, laying around really does help (with recovering from a spinal tap). By the end of the night last night, I sat up for a good hour, then went to bed with no headache at all. So this morning I got to go for a walk, and I did some weightlifting. I just avoided exercises that involved a lot of back movement.
Our house is full of visitors. It was great to hear the noise of people chatting first thing in the morning.
So many people always reminds me of a book I read called Revolution: The Story of the Early Church. It's a retelling of the first few chapters of the Book of Acts (from the Bible) by Gene Edwards. I have some problems with Gene's ideas about how a home church should operate, mainly because experience says it doesn't work very well, but there's no denying he's one of the best storytellers there has ever been.
Anyway, he describes the wild new life of the early church, as they tried to take care of hundreds of people who had come to Jerusalem for the Feast of Pentecost, then stayed after they heard the Gospel. He described waking up on a living room floor to another saint, and the exuberant joy of just being together.
It felt a little like that this morning.
As the morning passed we added David and Ariel and their kids, who stopped in on their way to the airport. They're "missionaries" to Sacramento, California, living out there for the purpose of helping Christians live that together life that Gene Edwards described. (As those of us who have tried know, being family is difficult for humans to do, especially when they're not already family biologically. It takes an ongoing infusion of the love that comes from heaven, and that love does not come in response to a set of good Christian rules. It comes only in response to a real and spiritual relationship with God.)
My parents are in town for the weekend. My brother and his wife are due this afternoon. My two oldest sons have also shown up, along with a couple of their friends. Of course, the way we live, my kids friends are usually my friends, too.
So it's a great day. I'm still having to lay down on and off to stave off the headaches from the spinal tap, but that's working great.
So, I'll send more news when I have it. I'll have to call the hospital Monday to find out when they're going to admit me for more chemo and how many more spinal taps they're going to do. Nurse Works made it clear there's going to be more, but there's no more scheduled at the moment.
Have a great day!
Our house is full of visitors. It was great to hear the noise of people chatting first thing in the morning.
So many people always reminds me of a book I read called Revolution: The Story of the Early Church. It's a retelling of the first few chapters of the Book of Acts (from the Bible) by Gene Edwards. I have some problems with Gene's ideas about how a home church should operate, mainly because experience says it doesn't work very well, but there's no denying he's one of the best storytellers there has ever been.
Anyway, he describes the wild new life of the early church, as they tried to take care of hundreds of people who had come to Jerusalem for the Feast of Pentecost, then stayed after they heard the Gospel. He described waking up on a living room floor to another saint, and the exuberant joy of just being together.
It felt a little like that this morning.
As the morning passed we added David and Ariel and their kids, who stopped in on their way to the airport. They're "missionaries" to Sacramento, California, living out there for the purpose of helping Christians live that together life that Gene Edwards described. (As those of us who have tried know, being family is difficult for humans to do, especially when they're not already family biologically. It takes an ongoing infusion of the love that comes from heaven, and that love does not come in response to a set of good Christian rules. It comes only in response to a real and spiritual relationship with God.)
My parents are in town for the weekend. My brother and his wife are due this afternoon. My two oldest sons have also shown up, along with a couple of their friends. Of course, the way we live, my kids friends are usually my friends, too.
So it's a great day. I'm still having to lay down on and off to stave off the headaches from the spinal tap, but that's working great.
So, I'll send more news when I have it. I'll have to call the hospital Monday to find out when they're going to admit me for more chemo and how many more spinal taps they're going to do. Nurse Works made it clear there's going to be more, but there's no more scheduled at the moment.
Have a great day!
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