Another Tour

7/24

No, I'm not dyslexic...I've now completed 7 of 24 rounds of radiation. And it makes me feel ill pretty much 24/7, but I'm still hanging in there. One foot in front of the other, just like on the backside of Whitney. Yes, it's hard and slow. One of the hardest things I've ever done, definitely. But we keep checking the clock, and so far we think there's still enough time to reach my goal. So I press on.


I knew beforehand the drawbacks to doing WBR and whole-spine radiation. When it became clear I wasn't going to be able to skip it altogether, I knew what I was in for -- another tour of the Valley of the Shadow of Death. And that, it is. But after only two rounds, I could already tell the difference in the spinal nerve roots in my lower back, so with the misery from radiation has come relief from cancer, making the nuisance stuff more worthwhile to me.

Here's what a day in my life is like right now:

I wake up out of a sound sleep, knowing I am about to VOMIT RIGHT NOW. I grab a trashcan next to me and throw up into it. There is nothing in my stomach, but I am throwing up white foam that tastes like NASTY medicine from my oral chemos the night before. My head hurts, too. I stagger to the bathroom, on feet that sting and burn with pins and needles and PPE, where my guts then explode for the next 15 minutes. I finally get to brush my teeth, and note part of the gum at the base of my teeth is starting to die. I go back to sleep until I feel better.

After I get past all the neuropathy and PPE in my feet and hands, bouts of diarrhea, body rash, and the extreme nausea from the chemo and radiation each morning; I crawl into the hot tub and start doing range-of-motion exercises. I then slide into the softest cotton clothes I can find; I can't use any lotions before radiation even on the rash. I also can't style my hair with heat or it will increase the chances of it not growing back, so I settle for wearing a hat. I tape my dry eye shut and then somone drives me the 45 minutes into the city.

Once at the radiation center, I change into the gown in the little cubby with my name on it. I usually don't have to wait too long before it's my turn for the machine. I head through the thick doorway. First thing is to ensure I am aligned PERFECTLY. I lie on the rads table in the "cradle" made especially to my body and am then pinned down (smooshed into foam facial blocks positioned and retained just for me) by a net mask made for me. It is the same kind as we used for Cyberknife, only this time I am face down instead of face up.

Click on any picture to see larger photograph.

Pinned and smooshed face down to hold the head in place for whole-brain radiation (WBR).

Once I'm pinned on that table, I am completely into my role on the radiation team, as are the techs. While they work busily over me making VERY IMPORTANT measurements and markings, I focus on visualizing cancer cells being ablated while healthy cells remain under a wing of protection. The techs' work requires such concentration, and I am so pinned, that I'm just the piece of meat they are working on at that point. The techs use a variety of tools to ensure my proper alignment, and then everyone leaves the room through the 2-ft-thick door and I am alone and waiting.

Ensuring the proper position for WBR and spinal rads.

They all exit the very thick door and leave me alone with the bursts.

The techs retreat to a remote control room on the other side of the building. There are no windows into the room in which I lie; they monitor me and the machinery via camera. Pinned face down as I am, inside the net mask, I really can't see or hear much, but I always know when the machine is getting ready to blast me by the clicks it gives beforehand.

The techs monitor and control the action from a remote control room.

And then I get the first blast, to the brain. The radiation oncologist is giving me a big burst of scattered radiation to the dura of my brain, and it is one heck of a wallop! Although my eyes are closed, I see lightning bolts of greenish blue-white light as the radiation hits the structures of my eyes. It's the same whether my eyes are open are not; I can "see" this energy. (The tech told me it won't matter if I close my eyes or not, because my eyelids can't block the radiation.) It is NOT visible on the camera, and therefore is probably not visible to others if they WERE in the room. But I can very much perceive the radiation energy, and I can smell an ozone smell as the burst of energy vaporizes any dust particles in the air.


The machine repositions for the second blast to the brain. The same thing happens again: lightning in the head and the smell of ozone strong in my nose. I stay focused in a meditative-type state. The techs return to reposition me and the equipment for the whole-spine blasts.

Unlike Cyberknife, the techs must reposition me, turning the table after bursts.

I have no participation while I'm repositioned and the techs again leave. I am almost oblivious to the spinal blasts (two); there is no accompanying lightning in my head and I can't really feel it while the machine is blasting me. Only the buzz of the machine tells me when my spine is being radiated.

After repositioning and blasting the spine twice, the techs finally return and free me from the net mask. HALLELUJAH! does that feel GOOD! I am always so happy. But wait -- it's not quite that easy to get off the table. Because by now, I'm feeling like I've been walloped upside the head pretty durn hard! I'm lightheaded, dizzy, stumbling a bit. Every now and again, it will burn a little on my back from the spinal rads, just like a burn or sunburn.

Afterward, I'm tired and feel a little beat up. And I go to bed knowing I'm going to get up and do it all over again each day for weeks. I just hope I don't wake up puking out of a sound sleep every morning.

STILL GOING!