Day -10: Not About Me

This blog really is not about me.

Want to cry a bit? Read this blog post about a 5-year-old cancer patient's Christmas. So great!!!

Day -12

I'm afraid today is boring, though that's a good thing. In and out of the hospital in about 15 minutes. Then we went home, I walked a mile and a half, very fast, and then I stayed up and answered emails.

It's now 3:22 pm, and I feel great.

My family's visiting, so it is good this is short. I already did my Read Through the Bible in a Year post for tomorrow before I went to the hospital this morning. I had actually forgotten about today's, so I did that after midnight last night rather than going to bed. I remembered on my way to bed! How sad!

I'm going to try to get all of next week's commentaries done this weekend.

It's really not hard. I don't have to look anything up in most cases. I've already asked all the questions that are important to me, and went to look them up, twenty or more years ago. Anything I'm studying and looking up now is not the sort of thing that ought to be covered in a beginning guide to the Bible like what I'm writing.

I'm confident there's a few unique things in there, though. There are not too many people writing basic Bible commentary like that who are familiar with the writings of the early Christians the way I am, nor who have pursued church life the way I have. Most basic Bible guides are simply rehashing traditional views without questioning whether they really have a solid basis in the Scriptures and the historic Christian faith. I offer a unique perspective, almost like getting Gene Edwards and David Bercot rolled into one, though I'm not as good a writer as either of those guys (and David Bercot is a more rounded historian).

Day -13

Hmm. Maybe one's brain gets used to radiation. No headache, mild fatigue. I took a nap; I feel great.

Well, that's a really short blog post.

So, let's see ...

We're having Jerry and Rayetta over for dinner. We're looking forward to that. His Graft-vs-Host symptoms—he got his transplant Nov. 30—are being well-handled by the treatments they're giving him. All good news there.

The Hickman Catheter

There's another fellow he's met, named Jonathon, that was looking awful yesterday. That's probably Graft-vs-Host, too. I think Jerry's a little worried he's going to end up feeling that way and end up in the hospital for a while. I'm still praying that he gets to avoid being hospitalized through this whole process, which would be awesome.

This morning, before the radiation, I went in to get the dressing checked on my new Hickman catheter. I met a couple new nurses, and something came up that made me say, "See, that's another benefit of having leukemia."

They laughed and said I was showing a good attitude, so I took the opportunity to explain that I really meant it. My wife told them I'm a writer, and I told them that leukemia is the best staging I could ever have hoped for. I could never have done something like that on my own.

So we passed out cards to them for this web site, and I promised the one nurse, Mary, that I would give her a copy of my book.

The hospital really is like my other home. We meet people, and almost all of them are really nice. Most of the time, it's really pretty fun.

Again, aren't we on this earth to have new experiences?

Well, no, we aren't. We're on this earth to fulfill whatever purpose God made us for, to do good, and to keep his commandments. However, why should doing the same 'ol, same 'ol be better than than this course I'm on. So far, it's been well worth it. I know this is the rough part and that it's always possible I'll be singing a different tune in a month, but I don't think so. I think it's really true that all things work together for good to those who love God and are called according to his purpose.

Even if I do sputter out in a month and turn into a mere survivor (rather than a thriver), it's worth enjoying what I have now. It's easy to enjoy! It's new, full of wonderful new people without losing any of the great old people, and it provides opportunity to encourage and inspire people. It's not only good, but it doesn't get much better than that.

Day -14: Radiation and Minor Surgery

Today, they gave me another dose of brain radiation. I could still see and smell it, but today I timed it (by counting "one, one thousand, two, one thousand, etc.") About fifteen seconds on each side. Quick!

Afterwards, once again, I was ready to fall asleep on my feet an hour later.

The problem was, this time I wasn't headed home. I was headed over to the other radiology department to get the Hickman catheter installed. This, as I mentioned yesterday, is a line inserted above my collarbone which goes into the aorta and my jugular vein. (Yesterday I said it was the carotid artery, but that's wrong. They insert these things in veins, not arteries. The jugular vein is the vein that Count Dracula feeds on.)

My wife did this. Great, isn't it?

I found a great seat in the waiting room that was right in a corner. I laid my head back against the corner and went to sleep as I waited.

I didn't sleep real well because the brain radiation makes me slightly nauseous. Because the Hickman catheter procedure involves sedation, I wasn't allowed to eat or drink anything from midnight last night until the procedure was over. Not having eaten made the nausea worse.

The radiology department had asked me to come an hour early. I'm not sure why. I sat in the waiting room the entire hour. They then took me over to the recovery room and put me in one of those hospital gowns, though I at least got to keep my underwear on.

I laid down there, and the charge nurse masterfully inserted an IV. Finding veins in the arms of us old guys can be difficult, and the skill level among nurses varies. This nurse could have inserted that IV with her eyes closed, I'm sure.

When she was done and I had signed the paperwork giving them permission to do the minor surgery, the other nurse told me there was a person in front of me, so it might be a while. We asked how long the procedure takes, and she told us about half an hour. This left us thinking that it would be 30 minutes to an hour before I went to have the catheter inserted.

Our mistake.

I laid there for three hours. In fact, I slept for almost all of it. That brain radiation apparently knocks me out pretty well.

On the way to the operating room, they explained that they would sedate me, but they wouldn't put me all the way out. They would need me to take deep breaths at certain points.

Once they got me set in the bed with drapes all over everything except my collarbone area, they gave me some medicine "to relax me." They gave that medicine to me in the IV, and then they gave me the Lidocaine shots to numb the skin they were going to cut into. Those things sting like a bee sting. There's no getting used to them.

After that they said, "We're going to give you a little more medicine, and then we'll get started."

The next thing I remember is the nurses telling me they were all done, though I don't remember even that very well.

I think they might have given me a little too much medicine, though it sure made the procedure easy on me!

When we got back to the recovery room, they offered me some Sprite and a pack of peanut butter crackers. The nurse told me that usually patients are so hungry by the end of the procedure that the crackers taste delicious.

She was right, though they didn't taste so delicious when I threw them up five minutes later.

They gave me some nausea medicine by IV after that. I ate the last couple crackers, kept them down, and we headed home. I was feeling great by then, though, so we stopped to visit Jerry on the way home. He's still doing great. He's had a little Graft-Vs-Host disease, but the steroid treatments have kept those at bay.

I came home and had five or six crackers for dinner. Mmm!

I think the nausea medicine from earlier had worn off, and the nausea pills I have at home didn't work. My highly effective weight loss plan has begun.

I'm encouraged, though. The brain radiation appears to wipe me out and give me a headache, but both effects seem to wear off after a few hours. Awesome.

Four more treatments to go! Then we do the big stuff.

Okay, I'm going to bed now. I'm tired despite how much I slept today. No surgeries tomorrow, so I hope to have more energy for the blog and for the "read through the Bible in a year" program.

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.

Update

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.

Cool.

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

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