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.)


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.


  1. Praying for you. Love ya too.

  2. i was a little worried about that blood/brain barrier getting crossed if they decided to do a blood patch (what with you having the SKL (Some Kinda Leukemia)... i guess it was already there though. i'm still praying for you and love you ridiculously much. --ashima

  3. oh--and hey, can you update us on jerry next time you're up to blogging?

  4. Thinking of you and praying often. I get a very helpless feeling sometimes when I hear bad news about you. I know God is in control but this mortal flesh feels awfully sad that you and Ashima have to go thru this. I love you both.

  5. I love y'all, too!

    I'll get a catch up on Jerry in the next blog (the 22nd or 23rd). Hopefully, I'll remember. The quick update is that he got 20 teeth pulled on Wednesday (Oct. 19), and he's back home in Virginia recovering. He gets 2 weeks to recover, and then he goes through the same transplant prep that I was going through (and failed due to blasts in my spinal fluid).