I've been de-ported!!

So I've completed 9 days of radiation. About 20ish to go. I should be done by the end of May. I go every day (Monday through Friday). The treatment itself only takes about 15 minutes so I've been able to do it on my lunch hour. Assuming I don't get stuck at any ridiculously long stoplights (I sat for 4 whole minutes at 700 East one day. Honestly, I was beginning to wonder if the light was malfunctioning) I can make in almost exactly one hour from the time I leave my office to the time I walk back in. It's been nice to not have to use up more sick leave for this.

It's been interesting. For the first week I had the same two radiation technicians. They were both women and were really nice. I got comfortable with them. Every day I drive up to the front door of the hospital, leave my car with one of the valets, and radiation is just inside on the main floor. I check in at the reception desk, walk back to the dressing room, don one of the oh-so-lovely hospital gowns and sit down in the waiting room for approximately 30 seconds before one of my technicians come and get me and walk me back to the radiation room.

I lie down on the table and they proceed to mark me up with markers. The first two days it was with sharpies. The circle all my tatoos and then draw a bunch of other lines that I don't really get the purpose of. The third day I offered to bring in a good supply of washables and they got the hint and have been using washables on me ever since. Then they take a couple minutes to make sure I'm in the right position and they have me lined up exactly how I was the first time I came in. I'm not sure how they do it, but they say they need to have me positioned accurately down to the milliliter. Then they turn of the lights, leave the room and zap me.

It's weird though because I am so much more uncomfortable with the idea of radiation than I was with chemo. There is just something about consenting to lie on a table while someone shoots radioactive waves through my body. I try not to think about it too much while I'm lying there, but it's hard to really concentrate on anything else. The technicians leave the room completely while the machine is working. Right at the entrance there is a big red light that turns on and an alarm sounding buzzer that goes off when I'm actually being radiated to warn everyone to stay away, and yet, there I am, lying on the table, absorbing it all into my body. Yikes. But, at least I don't really seem to be experiencing any side effects yet. I was told to expect extreme fatigue (Okay, that is nothing new. I can handle that one) and one heck of a killer sunburn at the radiation site by the time I was done. So far I haven't gotten any more tired than usual and my skin is showing no sign of irritation at all. That stupid machine better be working because I'm not doing this any longer than I have to.

One more fun little bit of information. I had my port removed. This is the little device they put just under the skin in my chest before I started chemotherapy so they wouldn't have to put an IV in my hand/arm/foot for each infusion. Well, anyway, I had them take it out. When they put it in, it was done in the operating room and though I wasn't completely out, I was pretty loopy once the procedure was over. To remove it was a lot easier, I guess. They just did it right in the clinic. Neil even got to stay in the room. They gave me a local anesthetic, cut me open, separated it from the tissue that had grown around it and pulled it out. I was kind of hoping they would have a mirror on the ceiling so I could watch it, but no such luck. Dang it.

The local burned when it went in, but small price to pay for not being able to feel anything. Or so I thought. I think he started making the incision before the anesthetic had a chance to kick in. I just lied there for a few seconds trying to figure out if what I was feeling was really pain or if it was just pressure. It only took a few seconds though before I figured it out and I said as calmly as possible, "Um, am I supposed to be feeling this?" He quickly gave me some more of the numbing medicine. It was kind of a crazy sensation.

Anyway, after he got down to it, he pulled it out and applied pressure to the area where the catheter entered the vein to give it a minute to clot up. I was grateful for that. Didn't exactly feel like bleeding internally. Though a nice, big bruise would be fun to show people. Then he stitched me up. I asked him if I could keep the port. So they cleaned it up a little and stuck it in a bag for me. I think I'm going to hang it on my rear view mirror. It will help me remember. I don't want to forget any of this. Not a single thing.

Complete pathological response

That's what they call it when they believe that the chemotherapy killed all existing cancer cells. That's what I've  been shooting for and that's what they think happened. Woohoo!! Of course, they won't say that they know everything is gone, because you never know if there is a single cancer cell still floating around in your system somewhere, but what they did say was that after thorough testing of all the tissues removed during my surgery, they were unable to detect any remaining malignancy. My doctors all seemed pretty thrilled. Apparently that only happens about 10 percent of the time.

So the next step is radiation. I was still really hoping that they would decide that I didn't need it, but after literally several hours of arguing with both my medical and radiology oncologists, I finally agreed to do radiation. However I did tell them that if my dermatomyositis flared again, I would be done with them. I'd rather deal with Cancer than Dermatomyositis in a heartbeat.

My first radiology appointment was just discussing the plan (and me arguing). Nothing too exciting, but the second appointment was somewhat noteworthy. I went into a room that had a big machine that looked similar to a cat scan machine. Like a giant doughnut with a bed through the hole. I'm using the word "bed" very loosely. It was more like a skinny, hard table with a sheet draped over it.

They asked me to lie down and put a pad of some sort beneath my torso. As I lay there, it started to inflate around me and slowly started to harden. They'd created a little mold of my upper body that I would use each time to make sure that I was in the exact same position each time. Next, they needed to determine the area that needed to be radiated. They started marking me up with sharpie markers, putting little x's everywhere. Then they did what I think were several different simulations, recording the settings of the machine. After they were done with all that they took pictures of me from every angle imaginable. They were going to refer to the pictures each time to make sure my hands and arms were positioned the same way, my body was at the same angles, etc.

Last of all, they made the sharpie marks permanent. Yes, I officially have a tattoo. Several actually. They are little blue dots that outline the radiation area. I have a few family members that have tattoos. I won't mention names lest they incur the wrath of grandma, but I've got to tell you, those girls are tough stuff. I thought I'd become pretty tough through all this, but those tattoo pokes hurt like a bugger! And I only had about five. I don't think I could handle what it would take to get an entire image tattooed on your body. Maybe it was the area they were poking, or maybe I was just being a baby, but the needles looked like little thumbtacks. She'd put a little dot of blue ink on me then she stuck me with the tack. Have you ever stepped on a tack? That's what it felt like. Except you didn't step on it. You rolled over in bed and laid on it. Yup. That's what it felt like.

So, that was last Tuesday. This Tuesday I have a dry run. They go through the whole process and make sure all the settings are accurate, but you aren't actually being radiated. I guess you could call it a dress rehearsal of sorts. I think I start the real thing the next day and every week day after that for 6 to 7 1/2 weeks.  (My radiation oncologist says 7 1/2. I say 6. We're still arguing about that one.) I'm still not entirely comfortable with the idea of radiation. There are just two many unknowns about how it is going to affect the Dermatomyositis, but I guess we'll find out.  As always, I'll keep you posted.