A Super-freaky Radiation Vacation and Some Blood on Friday the 13th

In the words of the great Rick James, the picture adjacent is "super-freaky." How appropriate for Friday the thirteenth...That's me getting my brain nuked this week during my "Radiation Vacation."

I decided to call it such as the very thought of cranial radiation scared the living daylights out of me and I was planning on taking a week's vacation from work, fully anticipating being in rough shape. The phrase "radiation vacation" was thus simultaneously ironic and literal, and I felt that this made the term a rather nice little literary gem.

My counts, however, weren't quite high enough to start the nasty chemo, the steroid withdrawal has entirely passed, undergoing radiation is far less scary than I thought (and it looks), and I have yet to experience any serious side effects from the radiation.

So, it really did feel like a radiation vacation, as I feel more myself than I have in a year and a half. I've seen friends I haven't seen in a long time, had some over for brunch, hosted a movie night, met other old friends for coffee -- it's been a good week.

"Radiation vacation," however, still manages to maintain its irony as this week instead of taking vacation I've had one of the busiest weeks I've ever had at work. I haven't sat down to count my hours yet, but when I do, it will be scary. It was good timing to have so many media opportunities when I feel so well and been a great deal of fun.

For the last eight mornings I've received low doses of cranial radiation (radiation to the brain). The hope is that this helps reduce the risk of A.L.L. relapsing in the central nervous system, yet there's very little empirical data to prove that it does, as this has been the standard of care for so long that there is little to compare it to.

In the last couple of years, a couple of treatment plans have cut out radiation as they are trying to figure out whether it's really necessary (this radiation can have some nasty effects on children, as their brains have yet to fully developed). After many discussions with doctors and much thought, I decided that because the risk of debilitating side effects is very low for adults and the increased risk of relapse is entirely unknown, that refusing the radiation treatment was simply too risky.

Each morning, I'd go in, lie down on a table, and the technicians would affix a mask that was molded to fit my head onto the table in order to keep my head still. They would then exit the room and turn on the machine to nuke my brain. This would take about a minute. They would then come back in, line things up on the other side and move the machine to the other side of my head, and then turn the machine back on to nuke the other side of my brain.

When the radiation would go off I would see a bright whitish-blue light. The very strange thing is I could see this light with my eyes closed, but not with them open -- precisely the opposite of every other experience I've ever had with sight.

I also would smell something burning when the radiation was active (let's hope that wasn't my brain)... One of the radiologist told me that many kids experience this, but few adults.

While this all sounds and looks rather unpleasant, it was far from it. In a strange way I'm rather going to miss it. The technicians were friendly and I enjoyed seeing and chatting with them every morning. The room was comfortably lit, mask tolerable, and they had an Ipod dock where I could play the excellent "Radiation Vacation Playlist" I had thrown together.

And, when they'd move the radiation machine I could see myself in the glass and I looked back at myself looking like Freddy Kruger and couldn't help but laugh each morning. As I said in the previous post, sometimes laughter really is the best medicine.

My only concern is that there is usually a time lapse between radiation and it's side effects, when people experience them -- here's to hoping I'm not brain-dead and drooling at my desk in two weeks...

I've been making a lot of such jokes lately, which are nearly always met by rather good laughter followed by "We really shouldn't laugh at that."

My philosophy is "what is there to do but laugh?" -- I'm just so glad I can still laugh at this after a year of it.

In other news, I awoke this morning with a nasty headache and heart palpitations and knew I was getting a little low on blood. Wanting to ensure I didn't beat the clinic record for lowest counts ever seen (held by none-other than yours truly), I went to hematology after radiation to have labs drawn to check my counts before the weekend to see if I needed a transfusion.

Having meetings scheduled all day, I asked my very nice and patient study coordinator to email me the counts and have someone call me if I needed some blood, then left to hurry home to check email, scarf down some food, shower, dress and get to the office as fast as I could. They called back and said I needed to turn around to get blood before I even got home...

After a bit of a conversation with one of the nurses, we finally figured out that I could get blood in the infusion center at 5:00 this evening so I wouldn't have to reschedule all of my meetings and could get some work done... I ran around like crazy all day and it was a great and productive day, then went to the clinic at 5:00 where it felt so, so good to be able to sit for more than a few moments without thinking about where I had to be next.

Looking over today and the last week, it's amazing how much energy I have with only half the blood of a normal person. It really demonstrates to me just how much the chemo drugs wear me down. I'm a little concerned what should happen if they ever get my red blood back to normal. I'll certainly be hyperactive (already am) and Katie will certainly have her hands full trying to keep up with me.

Because we went in at 5:00, they had everything ready and transfusing the two pints of blood took a total of about two hours, wildly contrasting the average 4-5 hours we spend at the clinic for a transfusion. I feel as though after a year of this, I'm really starting to figure the clinic out.

Katie joined me after work and she picked up a couple of pizza's from the very near and very good Lombardino's. As the blood dripped, we ate some pie and watched "Arrested Development" on my laptop, then she chatted with her sister as I wrote the first half of this blog post (I'm a little benedryled-out, so I apologize if it's less entertaining than usual.)

It's strange to say, but very similar to radiation, getting blood really made for an enjoyable evening.

When radiation and blood transfusions are fun -- well, I guess that really is frighteningly freaky Friday the Thirteenth...

Wishing you all well,

Sam

SHOUT OUTS! -- it's been too long, and many deserving of SOs will be missed...

SO to Brandon, Sarah, Steve, and the whole radiology crew: You guys managed to make radiation fun... Now, that's frightening...
SO to Ryan Schweitzer and crew: I hope you realize how great you're doing. I'm impressed. I was in far, far worse shape at the same point.
SO to the whole Clean Wisconsin crew: It was great making it back to the office to see all of you. "Thai Take Out and Tie-Tying" will take place, and it will be awesome.
SO to Dederich, Abby, Cavan, and Julie: It was great getting to see all of you this week.
SO to Mediocre Tim: Why can't we connect on the phones? I think the universe is plotting against us...
SO to Vitse for making me laugh: "I thought you were kidding. I thought that was a joke. I even wrote it down in my diary - [Vitse] had a very funny joke today. I laughed about it later that night."
SO to Ezra for Illiciting Elated Laughter in Excellent Emails Employing Exaustive Amounts of Awe-inspiring And Awesome Alliteration.
SO to Schryver for his first comment to me back in the office. I can't remember precisely what the phrase was, but I remember the general sentiment as well as the gesture and it was priceless.
SO to Melissa for being in the Wall Street Journal (maybe twice???) and for her marrow post comment.
SO to Scott: I think your my most diligent blog reader and I look forward to making it up to Rhine-town to meet up with you.
SO to Mitchell Mode: Do they have an "over 60" age category in the Birke??? (How can I not give you a hard time on this one?) Belated Congrats on turning 60; I just hope I get there and am in as good of shape as you.
SO to Dennis: Here's to being psychotically connected...
SO to Stuart, Vanessa, Dick, and all of my fellow fighters who blog.

SOs to be continued...

And finally, a picture of my brain: