I Am Aglow
We have now entered, and are leaving, phase 2 of treatment. For several weeks after the end of chemotherapy, I was able to enjoy a treatmentless existence. Two weeks after my twelfth treatment, I watched Wednesday come and go and I did not have to go sit in the torture chair. Of course I was feeling good- I always started feeling better about ten days after each treatment- but now, as I passed two weeks without more chemo, I started looking around for signs of improvement that I had been denied by the unrelenting chemo schedule.
My scan after chemo was, of course, crystal clear, just like it was after only four treatments- they would have had a lot of explaining to do had I somehow gotten worse during treatment. And not long after I had passed the two-week threshold did my energy level go up, and soon I was not having to take naps in the afternoon, which is good. The bad news, though, was that my reason- my sweet, legitimate, medical reason- for going to sleep whenever I damn well pleased was now gone, and I went back to being expected to stay awake through the day like a normal, functional, productive adult. But maybe not getting enough sleep caused this whole mess! Could be, so I'll stick with the generous sleep regimen.
The week of my "exit" scan I had appointments with Dr. Morgan and Dr. Tenenholtz, who is the radiation oncologist who I met with on the chock-full day of my first chemo treatment back in December. At that time we went over some details of the radiation treatment, though we were a little dismissive of the finer points, knowing that we would not be starting for about six months. This time, however, radiation treatment was imminent, so we went over what we were going to do and what it was going to do for and to me.
I am lucky in that the targeted areas are more or less in my chest: above my stomach, but below my throat. Unlike chemo, which courses throughout your body and wreaks havoc (in my experience) on the whole damn system, radiation treatment is focused only on the areas that need to be irradiated into reluctant submission. It's like spraying Roundup on the weedy areas of your lawn instead of dusting the entire backyard with it. And the side effects of radiation seem to be heavily contingent upon which areas of your body are being treated. For example, a friend of mine who had non-Hodgkins lymphoma a few years back told me, much to my chagrin, that radiation was far worse on him than chemo was. This was extremely unwelcome information, because in the days leading up to our breakfast together I had been contemplating the upcoming end of my chemo treatment and very much looking forward to radiation being a relative breeze. He elaborated, though, explaining that much of his radiation was targeted on his jaw and face, killing his taste buds, giving him sores in his mouth, and leaving him unable to swallow anything tougher than a smushed boiled egg.
Knowing that the "involved fields" are crucial to whether radiation is torture or just a mild annoyance, the rad. onc. took pains to assure me that the areas that they would be zapping would probably not cause me much more inconvenience than a mild sunburn and maybe some hair loss in the area- no big deal, but somewhat of a bummer considering that my chest hair was just beginning to return to its sunscreen-obviating glory. After his reassurances placated Caitlyn and I, he left the room for a moment, only to return saying "Soooooooo, you did have some neck involvement, so we're gonna have to treat that area, too." We spent the next five minutes listening to him back off of his earlier reassurances, which had implied that I was one of the lucky ones that did not have to get his neck zapped. Fortunately, though, the spot on my neck that had to be irradiated was off to the side, so hopefully my discomfort would not be much worse than the sheepish doctor's as he backpedaled from his previous statements.
The doctor prescribed seventeen treatments. They would be every weekday for three weeks and a few days. I went in for the initial scans, and they proceeded to take images and draw all over me with a Sharpie- these marks would serve as their guide when it came to positioning me for the treatments. What you do is you lie on a very mobile table with your arms up out of the way, and they adjust the height and positioning of the table, and when they need you to move a little bit they "roll" you by yanking on the sheet underneath you. There are (presumably very precisely calibrated) lasers coming from the walls and the ceiling by which the therapists line you up.
The machine has a window that projects the actual photons and electrons, but the field they want to irradiate is not the same as the window, so there are tiny "fingers" that close in horizontally. Picture a Star Wars-type steel door, but instead of just two heavy slabs that slide out of the frame to join in the middle with a clank, there are maybe thirty slim little fingers that close in, slowly and precisely, from each side. That way the shape of the window can be customized, as every little finger is capable of closing just as much as the doctor, via the computer, tells it to. For example, when they were doing my neck, they squeezed the window down to about the size of a Kennedy half-dollar.
Obviously the fields they wanted to irradiate in my chest were bigger, but they do their level best to keep from frying any organs and tissues that they don't have to fry. So the window opened up quite a bit to treat my chest, but since the "fingers" in the window are only capable of creating new outer borders- and since there were spots in the middle of the field that they wanted to avoid frying- they further customized my field using lead-alloy blocks. Pay attention, because this is cool:
Imagine you want to irradiate a donut shape on a patient's chest. You tell the machine to make a big circle, and the fingers close in in compliance with your wishes. But if you did the treatment now, you'd irradiate just a big circle, since the window is not capable of closing in donut shape- it can only make the circle. So the docs go to the Physics department at Vanderbilt, which is right next door in the basement, and have the Poindexters down there make a block- basically an extremely dense chunk of lead (and other stuff) that radiation can't go through. They make it to the exact specifications of your specific donut hole, then mount it on what looks like a square of plexiglass. The plexiglass then slides over the window and clicks into place with an assuring "cuh-link!" The block blocks out the radiation, and BAM- donut-shaped Chernobyl on the patient's chest. I guess when you think about it, the whole principle is the same one behind shadow puppets. Does that help? One time I picked up my fist-sized block, and it probably weighed about twenty pounds. It's crazy. I am looking forward to seeing the bill, because I am curious about how much those babies cost, and because I know that I don't have to pay it.
At the end of yesterday's treatment, after four out of the five "zaps" had been performed, the therapists realized that my final block was missing. They looked for a while, but eventually gave up and told me that they would have to have a new one made. Shit, I thought- am I gonna have to come back next week? Nope. I got on my bike, had some coffee, had lunch with Caitlyn, and by the time I got back my new block had been fabricated, cooled, and was ready to roll. These guys are pros, especially if you ignore the fact that they just straight-up lost my original block. Yep- other than that, real pros.
This is the machine, and that's the thing you lie on. There are only three places on my that they wanted to zap, but two of them they hit from the the front and the back- thus the five zaps per treatment. How do they get it from the back? That dark grey part of the machine stays put, but the entire lighter part wheels around until the "overhang" part is now an underhang, and they get you that way too. A normal treatment takes about 12 minutes, but most of that time is taken up by patient positioning, and allowing the machine to rotate into place. As you can imagine, a (probably) million-dollar machine that rotates into position with medical-grade precision does not do so very quickly. But the whole session is like 12-minute football game: sure, it's technically "happening" for the whole time, but take away the cheerleader shots, pretzel commercials, and insufferable banter, and maybe ten percent of it is actual action. The five zaps probably take no more than two minutes.
This is the readout on the machine. I never saw it do anything other than scroll out "Varian Medical Systems," but then again I was prostrate most of the time, so I wouldn't really know. It is menacing and futuristic though, like something out of Minority Report. I was slightly disappointed, because all this time I thought it was Vartan Systems, which to me is much more frightening and evil-sounding than wussy "Varian." When I hear "Vartan Systems" in my mind's ear, it's James Earle Jones's voice saying it, and when I hear "Varian" it's Mark Zuckerberg's. The other frightening aspect of these rooms was OPE: Other People's Equipment. The walls are hung with these wire busts of other patients, which I assume are secured over the patient's face, neck, and shoulders during treatment to make sure they are in the exact same position every time. It's part A Clockwork Orange and part Friday the Thirteenth, and the dim light of the treatment rooms enhances the effect. I was a little covetous of these contraptions until I realized that the people who had them had to be irradiated in far more sensitive, and therefore painful, places than I did. I guess I can live with my measly blocks.
I've had a bunch of different therapists- one is named Thomas Kinkade. Mostly the only sounds in the room were the therapists shuffling around and the sound of the machine, but one guy, Mike, always had the soothing sounds of Motown hits playing. Two of the younger therapists, Lacey and Lisa, always had country going, and for the last few days it was Kenny Chesney: first his greatest hits and then Welcome to the Fishbowl. And though his laid-back country-beach vibe did its best to make me imagine I was on some beach somewhere, respectful silence did feel like the most appropriate soundtrack to what was going on.
After chemotherapy ended, I was dreading going back for any kind of treatment. I had had a month or so to get better, and I was getting better, so dipping my toe back into anything that could disrupt my positive trajectory was not something I was eager to do. I figured at the time that, after six months of chemo, I could get through three weeks of almost anything, but I only partially believed that; after all, I had misunderestimated chemo quite a bit, and the memory of that brutal awakening is something that will probably temper me for years to come.
When I started writing this post, I was toward the end, but still in the middle of treatment. Now, though, I am done. D.O.N.E. It's amazing how fast seventeen treatments fly by when you're knocking down five a week- the radiation regimen is much less conducive to long, pensive blog posts than the glacial chemotherapy schedule. I don't have an appointment at Vanderbilt today, or tomorrow, or all week. I have to get a little blood drawn on the 11th, but that is just to monitor my blood thinners, which I've been on since April but might just be able to kick on 7-11. But it turns out that the actual end of my treatment is a little anticlimactic- not that that really takes away from the joy of it. It's just that radiation has not been much of a burden on me, so it has been a kind of ramping down from the end of chemo, which really cramped my style. When I walked out of the infusion clinic on May 7th with my silly "I'm All Done" sticker, I cried as I walked the two blocks to lunch. And when I heard Caitlyn pull into the driveway that evening, I walked out to her on the walkway and I was in tears before we could even put our arms around each other . That was a big day, and it was like all of the pent-up misery of the six months of chemo was dropping out of me at once. This day is no less big- it may be bigger- but radiation sucked less than chemo, so the corresponding relief is just not as intense.
This is not to imply that I am in tip-top shape- I am not. There is a little lung-burn from the radiation, my neuropathy is still terrible, and I am definitely softer and weaker than I have been in a long time- but I am firmer and stronger than I was a month ago. It would be naive to expect that the damaging effects of the disease and the treatment, as well as the neglect I have put my body through would get better right away. It did take seven months to get to this point, after all.
Even though I feel like this is over, I know I am still in the middle. I just finished treatment. I doubt my immune system is near where it should be. But the story is no longer gripping- it's leveling out a bit, and I am going to have to deal with the tiny incremental improvements myself. This does not mean that I am done writing about my experience, but it does mean that I am done blogging about it for now. I started this blog to keep friends and family informed about my state. It was an entirely selfish move, as I did it to avoid having to answer frequent email, telephone, and text requests for updates. But I know I am lucky that I had enough people asking about me to make it feel like a lot of work to respond to them. So thank you for reading, and thank you for caring, and I'll talk to you soon.
PH
The doctor prescribed seventeen treatments. They would be every weekday for three weeks and a few days. I went in for the initial scans, and they proceeded to take images and draw all over me with a Sharpie- these marks would serve as their guide when it came to positioning me for the treatments. What you do is you lie on a very mobile table with your arms up out of the way, and they adjust the height and positioning of the table, and when they need you to move a little bit they "roll" you by yanking on the sheet underneath you. There are (presumably very precisely calibrated) lasers coming from the walls and the ceiling by which the therapists line you up.The machine has a window that projects the actual photons and electrons, but the field they want to irradiate is not the same as the window, so there are tiny "fingers" that close in horizontally. Picture a Star Wars-type steel door, but instead of just two heavy slabs that slide out of the frame to join in the middle with a clank, there are maybe thirty slim little fingers that close in, slowly and precisely, from each side. That way the shape of the window can be customized, as every little finger is capable of closing just as much as the doctor, via the computer, tells it to. For example, when they were doing my neck, they squeezed the window down to about the size of a Kennedy half-dollar.
Obviously the fields they wanted to irradiate in my chest were bigger, but they do their level best to keep from frying any organs and tissues that they don't have to fry. So the window opened up quite a bit to treat my chest, but since the "fingers" in the window are only capable of creating new outer borders- and since there were spots in the middle of the field that they wanted to avoid frying- they further customized my field using lead-alloy blocks. Pay attention, because this is cool:
Imagine you want to irradiate a donut shape on a patient's chest. You tell the machine to make a big circle, and the fingers close in in compliance with your wishes. But if you did the treatment now, you'd irradiate just a big circle, since the window is not capable of closing in donut shape- it can only make the circle. So the docs go to the Physics department at Vanderbilt, which is right next door in the basement, and have the Poindexters down there make a block- basically an extremely dense chunk of lead (and other stuff) that radiation can't go through. They make it to the exact specifications of your specific donut hole, then mount it on what looks like a square of plexiglass. The plexiglass then slides over the window and clicks into place with an assuring "cuh-link!" The block blocks out the radiation, and BAM- donut-shaped Chernobyl on the patient's chest. I guess when you think about it, the whole principle is the same one behind shadow puppets. Does that help? One time I picked up my fist-sized block, and it probably weighed about twenty pounds. It's crazy. I am looking forward to seeing the bill, because I am curious about how much those babies cost, and because I know that I don't have to pay it.
At the end of yesterday's treatment, after four out of the five "zaps" had been performed, the therapists realized that my final block was missing. They looked for a while, but eventually gave up and told me that they would have to have a new one made. Shit, I thought- am I gonna have to come back next week? Nope. I got on my bike, had some coffee, had lunch with Caitlyn, and by the time I got back my new block had been fabricated, cooled, and was ready to roll. These guys are pros, especially if you ignore the fact that they just straight-up lost my original block. Yep- other than that, real pros.
This is the readout on the machine. I never saw it do anything other than scroll out "Varian Medical Systems," but then again I was prostrate most of the time, so I wouldn't really know. It is menacing and futuristic though, like something out of Minority Report. I was slightly disappointed, because all this time I thought it was Vartan Systems, which to me is much more frightening and evil-sounding than wussy "Varian." When I hear "Vartan Systems" in my mind's ear, it's James Earle Jones's voice saying it, and when I hear "Varian" it's Mark Zuckerberg's. The other frightening aspect of these rooms was OPE: Other People's Equipment. The walls are hung with these wire busts of other patients, which I assume are secured over the patient's face, neck, and shoulders during treatment to make sure they are in the exact same position every time. It's part A Clockwork Orange and part Friday the Thirteenth, and the dim light of the treatment rooms enhances the effect. I was a little covetous of these contraptions until I realized that the people who had them had to be irradiated in far more sensitive, and therefore painful, places than I did. I guess I can live with my measly blocks.
I've had a bunch of different therapists- one is named Thomas Kinkade. Mostly the only sounds in the room were the therapists shuffling around and the sound of the machine, but one guy, Mike, always had the soothing sounds of Motown hits playing. Two of the younger therapists, Lacey and Lisa, always had country going, and for the last few days it was Kenny Chesney: first his greatest hits and then Welcome to the Fishbowl. And though his laid-back country-beach vibe did its best to make me imagine I was on some beach somewhere, respectful silence did feel like the most appropriate soundtrack to what was going on.
After chemotherapy ended, I was dreading going back for any kind of treatment. I had had a month or so to get better, and I was getting better, so dipping my toe back into anything that could disrupt my positive trajectory was not something I was eager to do. I figured at the time that, after six months of chemo, I could get through three weeks of almost anything, but I only partially believed that; after all, I had misunderestimated chemo quite a bit, and the memory of that brutal awakening is something that will probably temper me for years to come.
When I started writing this post, I was toward the end, but still in the middle of treatment. Now, though, I am done. D.O.N.E. It's amazing how fast seventeen treatments fly by when you're knocking down five a week- the radiation regimen is much less conducive to long, pensive blog posts than the glacial chemotherapy schedule. I don't have an appointment at Vanderbilt today, or tomorrow, or all week. I have to get a little blood drawn on the 11th, but that is just to monitor my blood thinners, which I've been on since April but might just be able to kick on 7-11. But it turns out that the actual end of my treatment is a little anticlimactic- not that that really takes away from the joy of it. It's just that radiation has not been much of a burden on me, so it has been a kind of ramping down from the end of chemo, which really cramped my style. When I walked out of the infusion clinic on May 7th with my silly "I'm All Done" sticker, I cried as I walked the two blocks to lunch. And when I heard Caitlyn pull into the driveway that evening, I walked out to her on the walkway and I was in tears before we could even put our arms around each other . That was a big day, and it was like all of the pent-up misery of the six months of chemo was dropping out of me at once. This day is no less big- it may be bigger- but radiation sucked less than chemo, so the corresponding relief is just not as intense.
This is not to imply that I am in tip-top shape- I am not. There is a little lung-burn from the radiation, my neuropathy is still terrible, and I am definitely softer and weaker than I have been in a long time- but I am firmer and stronger than I was a month ago. It would be naive to expect that the damaging effects of the disease and the treatment, as well as the neglect I have put my body through would get better right away. It did take seven months to get to this point, after all.
Even though I feel like this is over, I know I am still in the middle. I just finished treatment. I doubt my immune system is near where it should be. But the story is no longer gripping- it's leveling out a bit, and I am going to have to deal with the tiny incremental improvements myself. This does not mean that I am done writing about my experience, but it does mean that I am done blogging about it for now. I started this blog to keep friends and family informed about my state. It was an entirely selfish move, as I did it to avoid having to answer frequent email, telephone, and text requests for updates. But I know I am lucky that I had enough people asking about me to make it feel like a lot of work to respond to them. So thank you for reading, and thank you for caring, and I'll talk to you soon.
PH