Monday, January 2, 2012

Day -15 (negative 15): First day of radiation

Uh oh.

I got my first dose of full brain radiation this morning, which was pretty weird and somewhat interesting. It only took an hour, however, for it to start putting me to sleep on my feet. I went home and took a three-hour nap, from which I have not been able to recover. I'm fine sitting here typing on the computer, but I don't have energy for much else.

You know how sometimes you can get in the doldrums and just want to sit and vegetate?

This picture was shared all over Facebook starting with Janet Miles Everett. I'm not sure if it's her copyright, but I'm giving her credit anyway.
I don't usually let that happen to me. I get up and do something. After a little moving, I feel revitalized, and I have energy for whatever I need to do.

Not today. I didn't want to go outside and walk because it's so cold, so I did some Tai Chi, then paced in the living room, then did some windmills. I had just as little energy afterward, but I was also tired from the exercise. I wanted to sit down even more than when I started!

I also have a slight headache. I decided it was probably not a good idea to risk being dragged down the first day, so I took an oxycodon for the headache. That's probably a little bit of overkill, but I didn't want to take Tylenol. Today's blood shows my liver enzymes are much better, but still bad, and Tylenol is not good for your liver. (Aspirin and ibuprofen are no-no's because they thin the blood.)

Tomorrow I get dose 2, and they place the Hickman catheter. That's a line near my collarbone that goes into both my ... oh, oh ... I can't think of the name of that artery in your neck that begins with a c. That's not the sort of thing I normally forget.

Don't worry, they say it's temporary.


I wrote this between 3:30 and 4:30 pm. it's now 6:30, and I feel great again. I wrote a relatively long email discussing the dissension between Cyprian of Carthage and Stephen of Rome over the rebaptism of heretics and the relation of that dissension to the role of the bishop of Rome (the pope) in the pre-Nicene church.

Unexpectedly, it energized me, and so now I've had supper with my lovely wife, and got my calisthenics in. In this case calisthenics meant Irish and Hebrew dance steps in the living room. Fun.

Apparently, some of the effects are very temporary, lasting only a few hours. Awesome.
Anyway, it goes into that c artery and into the aorta above my heart. It's like a two-way faucet to my blood stream. It provides three little ports through which they can draw blood out and put medicines in.

It's like a minor surgery, so they'll do the brain radiation first rather than try to radiate me while I'm groggy after the catheter placement.

About That Brain Radiation

The process was amazingly short and, like I said, pretty interesting.

They have a mask they made which goes over my face and latches my head to the table. There's a little stand under my neck so that my head is always at the same angle each time I go in. That way the computer can just memorize where to go.

They took a few x-rays, which had to do with measurements or something. Then, with the same machine, they greatly amplified the x-ray dose, once from the right and once from the left. It seemed like it only took 30 seconds or so on each side.

What was interesting is that I could see and smell it.

My eyes were closed, even though they had told me that I could keep my eyes open. However, when I heard the machine kick up for the treatment, it seemed like the whole room got brighter. It was like they suddenly took me out of that dimly lit room and put me outside on a mildly cloudy day. It seemed much brighter, though the light was more blue than the yellow you would see, even with your eyes closed, on a sunny day.

What was weird is that I opened my eyes, and the room wasn't any brighter at all.

It was one of those "cognitive dissonance" moments. (Why can I remember that phrase, yet still not come up with that artery name in my neck?) My brain couldn't resolve the dilemma. I closed my eyes, and the room seemed incredibly bright; I opened them, and it was dim.

It took a moment for me to believe it was happening.

I could also smell some electrical type smell, not quite like something was burning, but similar to that.

Then they did the other side; same effect.

Let me tell you, if this compounds, it's going to be hard to write over the next few days. I'm looking through a cloud already. They say the effects of the brain radiation are almost all temporary. If I can't write, I'm sure my wife will be willing to write up our daily experiences for you, which will make the blog significantly better.

The mask that goes over my face is mesh, formed to my face. It clamps down pretty tight, though not painfully tight, on my forehead. As a result ...

Blood Counts

My blood counts were down a bit today, despite the fact that there's been no chemotherapy since October. They didn't drop a lot, but they were already below normal, especially my white blood cells. In fact, my neutrophils, the bacteria-fighting cells, are borderline neutropenic at 1040.

Dr. Jagasia said it didn't matter. The tests all say I'm leukemia-free at the moment, so it's not a sign of relapse, and we're replacing that dysfunctional blood system anyway.


Carotid artery ... that's right, isn't it?

I'm going to go sleep some more. Good day to all of you!


  1. Carotid is correct. Can't wait till day 0! I'll be praying for you!

  2. Everyone can begin to pray for days 1-28. Those are the incredibly vulnerable days, while we wait for the new stem cells to engraft, and then rebuild a new immune system. Pray that all of that happens as quickly and successfully as possible. <3

  3. Been praying daily, always will, and know that these are so detailed days...prayers for your whole family, Lorie, and especially Paul's welfare, of course, and for your strength, and timeless attention to Hubby and family...What an Amazing family you are. <3

  4. carotid artery. remember I pronounced it wrong when my mom was having hers scraped out? You corrected (helped) me. lol

  5. Yeah, and now that we've got the name of the artery right, I found out it's not the carotid artery, but the jugular vein. Ports like that go into veins, not arteries.

    Thank you for everyone's prayers!