Ashe Elton Parker

A Writer of LGBT+ Characters in Speculative Fiction

Tag: radiation treatment

Radiation Side Effects

This entry is part 32 of 44 in the series Breast Cancer Posts

Radiation treatment isn’t a free ride. It also has some side effects.

Fatigue was a big one for me. I usually spend about 12-15 hours a day awake. Yes, I sleep up to 12 hours daily; it’s just the way my bipolar works. Sometimes I can get by for a few days on anywhere between 6-9 hours, but most of the time, I go to bed and spend an hour or three wide awake before finally dropping off to sleep. Depends, as I said, on my bipolar.

With the radiation, I was getting up at ten in the morning; leaving for my two-in-the-afternoon appointment at around noon because I’m on public transit; getting home anywhere from three thirty to five depending on how long treatment (including waiting, if they were behind) took and if I needed to see my radiation oncologist, followed by the trip home; and going to bed between six and seven thirty at night. I typically got to sleep before eight, I was so weary from the combined radiation fatigue and weekday-daily trips up to the cancer hospital. I do not want to contemplate what kind of condition I’d have been in if I’d had to work as well.

With breast cancer, and I imagine pretty much every other type, they’ll tell you to get lotion and offer a list of those which work best. I didn’t get any of these lotions the first week of treatment. I have since concluded I should have stopped at the store the day of my radiation sim and picked up one of the suggested lotions. Neither did I, once I had the lotion, perform the care necessary for preventing radiation burns with it. I developed these burns beginning the third week of treatment.

They aren’t pleasant. They aren’t fun. So, when told to get lotion, I strongly encourage anyone reading this to get the lotion and make sure you use it frequently and with abandon. My radiation burns developed first on the underside of my right breast, from which skin has been . . . um, I want to say peeling, but it’s not dry. It’s gross. More burns developed early last week under my arm, and those have been driving me batty. They itch, have the same gross peeling-skin as the under-breast burn, and are kept in a constant state of raw painfulness because it’s hard to live life with my arm constantly raised (LOL).

Luckily, I started tending to my areola and nipple before the skin on it got bad. Previously, it had a brown appearance, as though it had been deliberately left to tan in the sun. Now it’s pink again, and the skin coming off it is dry and flaky. It occasionally sends spikes of stinging pain through my breast because the nipple is oversensitive and no matter what I do, there’s some level of discomfort involved in its current condition. I don’t dare go without a bra, though; that would make it worse.

I’ve been putting Neosporin on the underbreast burn consistently, and that seems to be helping. Also on the underarm burn, which also seems to be improving. I now lotion the top and sides of my breast and alternate putting lotion and Neosporin on my areola and nipple.

In addition to these side effects, my breast became quite ruddy as a result of the treatment. This, and, according to my radiation oncologist, Dr. Poppe, some tenderness is quite common and to be expected.

Radiation Treatment

This entry is part 31 of 44 in the series Breast Cancer Posts

Radiation treatment for breast cancer is pretty simple. A typical treatment regimen lasts for 6 to 6-1/2 weeks, with a standard dose of radiation for most of the duration, then a period of a few days with a “boost” or additional radiation to finalize the treatment. The patient goes in weekdays for the treatment, and doesn’t go in on holidays, at least where I was getting my treatment. The Huntsman Cancer Institute isn’t open on holidays. Other cancer clinics and hospitals may be.

I didn’t have this. My treatment was 15 days. I had this reduced treatment period because I joined a research study and was randomized into the experimental arm. My treatment consisted of what I’d have been getting had I gone the six-plus weeks, with my boost administered at the same time. I forgot to get information on what substance they were using for my treatment, and though I did think to ask after dosages, I didn’t write it down and didn’t get a chance to before I forgot. I’ll get that information when I see my radiation oncologist in May.

At the Huntsman, cancer treatment involves changing into a gown. Since it was my breast, I removed only my shirt and bra and wrapped the gown around myself. Then a wait in a small waiting room with other female cancer patients (men had their own changing and waiting rooms). When called back to the treatment area, I’d walk up a hall with the technician and stop at a computer to state my name and birthdate, something they have patients do to ensure they have the right one and that they’re thinking clearly. Usually a tech would fetch a warm blanket for me.

Radiation Machine

This is the radiation machine. Its bed/table already has my mold on it, covered by a sheet so I wouldn’t stick to the plastic which held the substance. The part at the top is where the radiation comes from, and there’s a little panel on the bottom end of the machine which extends out, I suppose to “catch” the radiation.

For treatment, I’d climb onto the table, make sure my rump settled against the butt-bump, which is barely visible in the lower right hand corner of the image, and arrange my head, shoulders, and arms as the mold dictates. Once I was basically comfortable, a tech would raise the bed and both would proceed to roll or tug me enough to get me into proper position for the treatment. Once or twice, they had to tape my right arm a bit so no part of it would be in the field of the radiation. The first time, about midway through treatments on the seventh or eighth day, and the last day, they took X-rays to ensure I was in proper position.

If you look at the image, you’ll see the rotational part of the floor, to which the bed is connected. First, the bed would run up into this, putting my head close to the screen on the machine. As this occurred, the top of the machine rotates to the left. I’d usually have to adjust my left arm so it wouldn’t hit my elbow; the whole thing is about two or three feet across. Since my head faced to the left, I got to see the face of the administration area every day; rows of bars which look like ribbing frame the area; they can be adjusted so only the area assigned for treatment receives the radiation. A light would shine from this area as it adjusted for treatment.

Once everything was positioned correctly, the radiation machine would proceed to hum and buzz and click as treatment was given. There is no physical sensation to this. No pain, no warming of the skin, no tingling. Nothing.

The machine would then rotate to my right for additional treatment. I’m not sure exactly what part was the boost, but this was definitely step two. As the machine rotated, it would click as the ribbing-bars under its glass face were adjusted to shape for administering radiation on the right side of my breast. I never saw what it did precisely, because I was not permitted to move my head from its position; to do so may have shifted me too much for treatment to be accurate. Once the machine settled on the right side, with the black panel thing extended in my view, the machine would hum and buzz and click again. Again, no sensation accompanied this.

The Cone

After this, the techs would come in and adjust the bed’s position so they could put the cone on (see in image above). This is designed to block off the additional radiation so it would affect only the area of my breast where the lump was. I think this was the boost, but I can’t be certain without asking, so don’t quote me. The techs left and more clicking and buzzing and humming for the last step of treatment.

With this, treatment would be completed, and they’d lower and pull the bed out of position so I could move around and sit up.

Radiation Sim

This entry is part 30 of 44 in the series Breast Cancer Posts

At three in the afternoon, 26 February of this year, I had my radiation simulation appointment.

This was pretty involved, compared to the radiation treatments themselves. After changing into a hospital gown open in the front, I was taken to the radiation chamber. In this room they have the radiation machine. It’s kind of hard to describe, but it has a table/bed with a slightly-propped up head beneath an overhanging unit which actually administers the radiation. I’m sure the head of the bed can be lowered, but for this it was left propped up and had my mold on it; there’s a slot in the table, and a protrusion on the bottom of my mold so it doesn’t slip. The techs covered the table and mold with a sheet, and there was a little butt-rest. After I got on the table, they tucked a knee pillow under my legs.

Then I laid there for about half an hour or so while they did various things.

First was positioning me. After commanding me to lay like a lead weight, the techs proceeded to quote numbers at each other (ninety-nine five is a popular one) and adjust my position minutely. This involved tugging the sheet beneath me, pushing my legs around, and making sure my upper body was properly positioned in its mold. They then drew circles around the tattooed dot on my right side and between my breasts.

They took X-Rays to mark my position so they could do comparisons later to make sure I’m in the same position for radiation treatments. The head of the machine moved as well, I guess so they could determine where it should be for optimum radiation dosage. An oblong oval was also drawn on my breast, one end going around the inside of my areola and extending to past the seven o’clock position on my breast. This was done in black marker; they also made another mark in green to assist with their adjustments of the machine.

They had a Pandora music station playing and allowed me to choose what I wanted to listen to, so aside from paying attention and asking questions whenever a tech was in the room with me, I got to relax to some good music.

When they were done, one of the techs told me not to wash off the black ink on my breast ’cause they’d need it for guidance the next day. I told him that might be a challenge, half-joking, and he offered a Tegaderm patch and stuck it on the portion of the oval which extends past the seven o’clock position. That done, I was escorted back to the waiting room and returned to the changing room from there to dress.

My Indie Publishing Career

It has long been my intent to go to college to gain skills for a good-paying job. Some few years ago (’09-’10 or thereabouts), I determined to go to community college for an Associate’s Degree in Accounting. That plan fell through one day because I couldn’t convince my mother, who’d driven me to the community college’s main campus to finish my applications process, to park where the parking lot attendant told her to. Upon hearing we couldn’t park in the cordoned-off area where students, staff, and faculty were permitted to park (provided they had the appropriate sticker or tag or whatever), Mom turned the car around the watch post with the declaration, “I’m not walking all that way to get to the building, and it’s too hot to sit in the car!”

Then again, Mom was never exactly supportive of my goal.

I let that setback beat me back down to the point of not bothering, and it was compounded a couple days later when I went to the financial aid site anyway to apply . . . and had an anxiety attack. Not a severe one, but I could not for the life of me get past the first few boxes I had to fill in with my name and other pertinent information required. It did not abate until I closed the site and went to read to get my mind off the stress of preparing for school, which I’d previously determined I’d find a way to get into no matter what it cost.

It remained in the back of my mind, though. Over the intervening years since my failed attempt, I researched careers, doing a better job this time, and finally settled on Medical Coding and Billing as the career I’d enter. I found the community college’s page with the listing of the class requirements on it and bookmarked it to revisit every so often to inure myself to the idea of going to school. I set a goal: I’d start school in Fall Semester of 2013.

Then I was diagnosed with cancer in August of last year, and all the appointments required for everything from examinations to surgeries to consults for chemo treatment took up that time I needed to apply, prepare, and attend classes. So I set back my college goal to Fall Semester of 2014. I would go to college in 2014, no matter what.

This entire time, I had the plan to Indie Publish my writing. I had that “all” set up in my mind. I’d finish a set number of books, then release them as soon as I had a paying job with my new Medical Coding and Billing skill. This thinking, I have to admit, was carried over from my old, abandoned, Trad Pub goal days. That goal was born in the Nineties. I’d have/get a full time job, write in my off-time, and send my finished product on the rounds of agents. And become Published.

I should say, these were the days when I was much more mentally stable without medications than I am now. I could have handled the Trad Publishing route then. My Bipolar, which I’m certain I presented to some extent in the Nineties (and probably even before, possibly as young as my teens), was not severe. I could sleep nights without assistance from even over-the-counter sleep aids. I was able to hold down a full-time job, and I appreciated all the “free” time my manufacturing positions gave my mind to play with story scenes and ideas, because I’d spend second shift working preplanning one or more scenes in my head, running them through over and over again until they were very nearly edited to perfection in my mind, then go home to spend the hours between midnight and three in the morning actually typing them out on Kitchen Imp, the computer Mom bought, which we put on a desk in the kitchen. A Trad Pub career for me at that time, if I’d been able to launch myself into it, may well have been successful. I was driven, and I was dedicated, and I intended to set the world on fire with my fantasy stories.

And I clung to that dream. Desperately. Get off of Government support. Get an education. Get a good-paying job. Then launch my publishing career. I had other goals wrapped up in this. Namely transitioning as far as possible and buying my own home. And those are still my goals. However, they’ve never been as powerful as my goal to become Published. And, even when I switched my goal to becoming Indie Published, the strength of my desire to be Published never flagged.

But I had an epiphany last week. At some point. I’m not sure what day any more. Probably at some point during the all-nighter I pulled in an attempt to reset my circadian rhythm. Such epiphanies as this generally hit me when I’m exhausted. Being overtired frees my mind, and I make progress on writing if I’m lucky, or have epiphanies about other things to do with my writing or, sometimes, as this one was, regarding my Real Life.

It occurred to me I could launch my Indie Publishing Career any time I want. I could launch it tomorrow, though I’d be woefully unprepared, and my books wouldn’t have covers, and half a hundred other things which need doing and need time to be done, not the least of which is completing radiation treatments. But I could launch my Indie Publishing Career tomorrow if I wanted.

It took several days for this flash of realization to really sink in, though, and I spent those days totally amazed at it, stunned, unable to believe the audacity of the thought. Any time I want. It, frankly, terrified me at first, this thought. As much as going to school terrified me. And I had to let that terror fade before I could even consider the option without freezing and experiencing a deeper anxiety than trying to fill out the financial aid form years ago gave me.

Once it faded sufficiently—a few days ago—I drew J.A. Marlow, the resident Indie Publishing Expert at Forward Motion for Writers into an Instant Messaging chat to discuss what I needed to do to begin the process of establishing my Indie Publishing Career from my current financial status. She had much good advice, and it got me thinking about things I need to start thinking about now if I’m going to make my Indie Publishing Career fly.

No, I’m not scrapping my college goals. They’re being set aside for the nonce, but not forgotten. First things I need to do are talk with Social Security about my SSDI and the VA about my Pension to determine what’s going to happen with my income. This is of prime importance. I need to know what to expect so I can plan for losing at least a part of this income once I start earning any money from sales of books, even if it’s only one or two sales a month. I can’t do this until after my radiation treatments are done, because it’s going to take at least half a day for five days a week anywhere from three to six and a half weeks to get this done—I won’t know until my contract to join the research study is signed and processed and the arm of the study I’m to go in has been randomly selected. Once I’m done radiation treatments, I’ll have the time I need to visit with representatives of Social Security and the VA to discuss this with them.

So, for the next several weeks, I’m going to create a list of questions to ask. I’m going to formulate a tentative Indie Publishing Career Plan, which I will set into motion before I’m certain of anything, because my goal to Indie Publish will remain no matter what, and no date is carved in stone at this point.

I will say this, however: My instinct is to scrap the school-and-paying-job goal and run with the Indie Publishing Career goal. I feel more strongly about this than about any other goal I’ve ever set or claimed to have. Even transitioning. Yes, I want to transition. I’d also very much like to buy my own place to live. But I don’t want either of those things with the same burning fire in the pit of my belly as I want my Indie Publishing Career. As terrifying (and, yes, I’m still deeply terrified of my Indie Publishing Career goal), as it is to think I may be able to get my Indie Publishing Career off the ground from where I’m at right now, it’s also exciting to think about. I feel more anticipation about this than about any other personal goal I’ve ever had. I want to go out and get it done right this minute and have felt this way, in some small way, from the moment I realized I could have my Indie Publishing Career any time I want.

It’s a big risk, an even greater challenge, but I feel better over this possibility than I’ve ever felt over my school-and-paying-job goal. That never excited me; I felt more dread over it, and trapped, and quailed at the thought of forcing myself to endure an uninspiring job. Starting my Indie Publishing Career absolutely thrills me, and the thought I could live my dream of sharing my words with people within two or three years instead of four or six fills me with such joy I don’t think I’ll ever forget the feeling.

But I’m not going to leap without looking, and I’m not going to do it without knowing what I can expect when I start publishing. I have plenty of time to research things and make a well-thought-out decision about this. It’s just that I feel far, far more certain about my Indie Publishing Career goal than I ever did about my school-and-a-paying-job goal.

Scars and Stuff

This entry is part 15 of 44 in the series Breast Cancer Posts

I would not have noticed the lump in my breast if it had not been right beneath the skin. In fact, I didn’t notice it for quite a while. The lump seemed kind of large to me, and the fact it had already attached to a lymph node gave me the impression I’d been feeling the lump and assuming it was my nipple being hard for a lot longer than I’d like to admit. I was not doing active breast exams, but I can tell you, finding this cancer has definitely galvanized me to do so.

The lump’s position on my breast was at about ten o’clock when facing the breast, right beside the areola. Now, since the surgery, I can feel the stitches put in to pull the remaining tissue together so I won’t have a void where the cancer was. My nipple is about half-submerged now, due to the pulling of the surgical scar; I don’t know if this will correct itself over time. It’s also a little off-center—my nipple now points in a slightly right-hand direction instead of down. It makes things like folding my arms very interesting now, because it’s right at the point where my arm bends when I do so.

I measured my scars today, too. Just to give y’all some idea what’s there:

I took the remaining steri-strips off my breast scar. It’s approximately four inches long, and is somewhat vertical, edging the areola. It directly bisects the ten o’clock position where the cancer was. A month following the surgery, it is now pink and looks well-healed.

The underarm scar is at least three inches below the point where my arm bends, and is approximately two and a half inches long. A month after surgery, it is slightly purple but well-healed. It feels swollen in that area and higher up under my arm, but it may actually be me feeling interior stitches which haven’t dissolved yet, or part of the neuropathy side effect from the surgery.

Approximately one and a half inches below my underarm scar is the JP Drain scar. This is perhaps half an inch wide and pinkish, well-healed. It no longer itches and when I get goose bumps, it doesn’t hurt as it did before (lots of shivering recently as it’s getting colder).

I have cancer-stuff appointments next week. Tuesday, I’m going to the Huntsman Cancer Institute for radiation prep and on Thursday I’m going to the VA for various tests and to see the Oncologists again. I’m not sure what the radiation prep appointment will include, but I imagine it may be an introduction to radiation therapy and a discussion with the doctor about my condition/status. I called the VA to ask what the Oncology appointment would be about and was told I’d get information on Chemo and how to deal with it and that they won’t start Chemo until after I’ve had two or three appointments with the Huntsman Institute about my radiation therapy so they could coordinate care prior to starting it. Apparently, this system is slightly less cumbersome if one is receiving all their cancer care up at Huntsman (LOL).

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