Ashe Elton Parker

A Writer of LGBTQ+ Characters in Speculative Fiction

Tag: Huntsman Cancer Institute

Radiation Setup Appointment

This entry is part 28 of 44 in the series Breast Cancer Posts

Last week, I went in for my radiation therapy setup appointment. This was a bit involved; after an initial meeting with my Radiation Oncologist, Dr. Poppe (pronounced poppy) and a young doctor (forget if he was a resident or actual doctor) who saw me for a few minutes prior to Poppe’s visit, the staff showed me to a dressing room. I of course received two breast exams.

As always, I requested a plus size gown. I’m so glad this place has them. Makes wearing the suckers much less troublesome and embarrassing (for other people; I don’t really care all that much who sees my breasts, and I’m usually required to wear them while my bottom half is still dressed in street clothes). Anyway, I took my happy little plus size gown into the changing room. This had three or four curtained-off changing areas, each with a bench and a mirror, and about five or six lockers. My boobs are good for something; after donning the robe open in front, I overlapped the edges and tucked the sucker up under my breasts to keep it closed while I stowed my removed clothing and satchel in locker #3.

Back in the corridor, I met the nurse who’d showed me to the dressing room and she led me to the prep chamber. Here, they had me lay on a PET scanner bed and uncovered my right breast, having me remove my arm from the hole. Then, Female Tech went over to prep a mixture which would harden to serve as a guide for my radiation visits. While she did this, Male Tech described the procedure. When FT came back, she had me sit up enough to put the plastic-bagged substance beneath where I lay and told me to rest with my arms up around my head and my head turned to face to the left with the explanation I was to remain in this position until the substance in the large square of blue plastic solidified to make a mold of me laying this way. After they had me organized so they could put me into the machine, they taped the edges of the molding stuff around my arms so I’d have some support. This does not mean they wrapped the corners and edges of the blue bag with the molding agent up over my arms, but that they ensured it would provide support so I wouldn’t grow weary and thus possibly interfere with my future radiation treatments. The molding agent was exothermic, and it grew almost unbearably hot while I lay on it, but even that wasn’t too hot; the room we were in was quite chilled due to efforts to keep the scanner from overheating.

Thus trussed, the techs then marked my skin with ink and stuck little metal stickers on me. These were all meant to guide their scanning and other procedures which I’ll describe a bit later. After applying these things, they scanned me, using the stickers as pointers to plan where to put the majority of the radiation, I guess. I couldn’t see anything as my head was still turned to face to the left. Scanning done, they pulled me out of the machine and paged Dr. Poppe.

When Dr. Poppe arrived shortly, he came with the young doctor who’d seen me earlier. Poppe checked over everything, then noticed my porta-cath was still in. This displeased him a great deal, because he dislikes them being in place during radiation, apparently because they cause some interference with correct dosage hitting the spot; see, my breasts are so large, the breast tissue goes right up to my collarbone, particularly with the right breast, which is about one or two sizes larger than the left. I asked Dr. Poppe if he wanted me to see if I could get the port removed prior to treatment, and he fervently agreed with that plan, discussed things with the techs some more, then departed.

Female Tech remained, announcing she would tattoo me next. I asked what this was for. Apparently, they use little dot-tattoos as guides for radiation treatment. After explaining the tattoos would only look like little moles or skin blemishes, she put one on each side under my arms and one in the center of my chest between my breasts. This involved very little. She inked my skin, then I felt a little pinprick she warned me I’d feel so the ink would enter my skin. I didn’t even bleed.

After, Male Tech came back and they removed the stickers and mold, which had solidified at last, and helped me sit up and cover myself. I returned to the changing room and dressed once more, then saw the head of the Radiation Research Study, Crelley, who had me sign a form to join, then made sure I had the okay to go before leaving.

Have talked to Crelley since, and she said I was randomized into the 3-week arm of the research study, where I’ll be getting a higher dose of radiation. This pleased me, especially since Dr. Poppe expressed concern I may not be able to get into the study at all due to consistency of breast tissue and breast size.

Radiation Consult

This entry is part 16 of 44 in the series Breast Cancer Posts

This morning, I rose at 5:30 AM for my appointment at the radiation clinic up at the Huntsman Cancer Institute. I missed the train I could have caught if it hadn’t taken me twenty-five minutes to walk up to the commuter train, but had left two hours ahead of the time they told me to be there—8:30AM—so I still had plenty of time to get up there before I’d be considered late. I actually arrived about five after eight, and they had me fill out a bunch of forms relating to my health history, emergency contacts, and whether or not I had a Do Not Resuscitate order somewhere. I did this standing at the counter, because sitting and trying to fill out a form with my hand falling asleep would have taken longer because sitting would have put the clipboard in my lap and required my wrist be slightly bent. The secretaries were quite willing to let me do as I wanted to fill out the forms because I did so at an out-of-the way spot.

I didn’t have long to wait after I finished the forms, and was taken back for vitals and to be shown to the room where my radiation therapy doctor would see me. At the Huntsman, they have seven doctors, and eight little swinging pointers connected to the wall beside the outside of the clinic doorways to indicate which doctor should visit which patient (the eighth is to indicate the room should be straightened up, iirc). I was told to undress the upper half of my body, don the nice plus-size hospital gown (the VA has a severe lack of these, so I’m always happy when another doctor/clinic I go to has them), and wait for the doc. I sat in one of the extra-wide chairs instead of the exam bed and read a new book.

I didn’t see my attending physician right away. A Resident physician and a Student doctor came in. I say it this way because the Resident was very much in charge as he went over my history and the forms I’d filled out with me, and the Student Doctor was very quiet until he prompted her to ask any questions she had. She was apparently very new to clinic visits like this.

Resident Doc (I’ve forgotten his name, sorry, and his business card has not been included in the paperwork I received as I was told it would be) had me hop up on the exam table. It’s couth in breast cancer care like this to put on any hospital gown they give you backwards, so the opening is in the front, and I had done this. Resident Doc performed a typical physical (not using a hammer to test my knee reflexes, for which I was glad—his finger-tap was just hard enough to elicit the proper response without causing pain), then had me lay back for yet another full breast exam.

You get a lot of full breast exams when you’re in breast cancer treatment, because all the doctors you come into contact with want to “see” for themselves the condition of your breasts.

He started with the left breast, pressing hard. Then he palpated my armpit with equal force, which tickled and made me laugh. When he was done, he moved to the right side as the Student Doc did an exam on my left breast for learning purposes. When Resident Doc got to my right armpit, he pressed hard enough to tickle, and I laughed again. Student Doc followed his example, her touch a little firmer than before, but still not hard enough to tickle me.

This done, Resident Doc had me hop off the exam bed and sit, and he and Student Doc departed to fetch my attending physician, Dr. Poppe (pron. poppy). I find it interesting that he turned out to be growing a beard. Mostly because his first name is the same as my Psych Doc and my Psych Doc also grows a beard in winter. However, the two could not possibly look more different.

Dr. Poppe had me hop onto the exam bed again and I got another breast exam. He pressed as hard as Resident Doc had, which made me laugh, and, at one point when he was on my right side, said “You’re funny.” Then, he palpated my abdomen, which made me laugh harder, and he asked Resident Doc and Student Doc if they’d gone through this too, which they of course verified, which induced Dr. Poppe to once more tell me I was funny. (I’m still chuckling over this whole thing.) I think I must have been Dr. Poppe’s first patient ever to be ticklish.

After this breast exam, I once again hopped down and returned to my seat so Dr. Poppe and I could chat. He said Chemo is done first, for anywhere from three to four months, then the patient comes in for Radiation Therapy for six and a half weeks, 20-30min a day weekdays. However, there’s a national clinical study being done with breast cancer Radiation Therapy, which, if I decide to participate in, will have me going in either three weeks or four and a half weeks. They’re trying to test the efficacy of shorter treatment periods. I’m not sure if that means I’ll be getting stronger doses of radiation or not.

At the end of this chat, Dr. Poppe gave me an information packet on Radiation Therapy, including a calendar of events happening at the Huntsman, and told me he’d fetch the paperwork regarding the clinical trials for me since I’d asked for it. Then he, Resident Doc, and Student Doc departed. I read a bit more while I waited, and the head of the clinical trials at the Huntsman came to give me the paperwork promised. She was kind enough to show me out as we chatted about breast cancer treatment in general.

I haven’t gone through the Radiation Therapy information packet yet, or even the clinical trial paperwork. I plan to do so by this weekend at the latest and will post about it once I have read the information.

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).

Oncological Update

This entry is part 10 of 44 in the series Breast Cancer Posts

My mind is blasted. It started at the VA Hospital today, at my late afternoon appointment with the oncology department. I did not expect this to happen, and I wish now I’d taken notes because I just can’t seem to sort anything out of what I was told.

I’d like to go into what specific chemotherapy drugs I’ll likely receive. Didn’t write any of them down. I do know one is a steroid, though.

I’d like to write about how long I’ll be in chemotherapy. I can’t, though, because I didn’t write that down, either. I do know it’ll be anywhere from four months to at least eight.

I do know I’ll likely be going for chemo about once a month. It’s tentative, but that’s what the head oncologist plans for me. This, I must say, is a relief to hear, and I rather hope it comes true. I’d far rather make one monthly visit for several months rather than two or three visits a month for a shorter period of time. Especially after what I heard about some of the side effects of the chemo medications. He’s going to call someone at the Huntsman Cancer Institute to discuss his plans and see what they say, and I’m glad he’s getting a second opinion. General consensus from the people I spoke with today, including the head oncologist, is that since it looks like all the cancer was removed, they don’t need to do a major attack with the chemo stuff. From what I understand, this is simple follow-up to make sure nothing which may have been left behind survives. My prognosis for surviving this cancer is very good.

I do remember a little about the side effects of the chemo. I’m definitely going to lose all my hair. My eybrows. My eyelashes. I was so far behind on what they were telling me by the time the woman who spoke longest with us got to this part of the side effects that the only question I thought to ask was, “Will my eyelashes grow back?” This makes me laugh now, but I was very concerned about it at the time. As much as it annoys me that my eyelashes brush on my glasses lenses, which then require cleaning, I just could not imagine not having eyelashes.

Oddly, the woman we spoke with longest (who was neither of the two I met last time), told us (Mom was with me) her own mother had recently gone through breast cancer. She said each individual’s reaction to chemo is different, so while she could tell me what most people went through, she said things might not be on the same timeline as theirs, if it happened at all for me. For instance, her mother lost her hair early on, but not her eyelashes or brows until near the end. I might have one chemo treatment and have everything fall out before the next time I go in. She was also able to verify the differences Dr. Savarise told us about—that the energy-sapping effects of chemo may be different for different people—and that I should expect to be tired around ten days following treatments. She said this is because my white blood cell count will drop, and that I should stay at home if at all possible on the tenth day and on days preceding and following it, to ensure I don’t come down with a more mundane illness on top of everything else.

She was also able to tell me that I would most likely experience at least nausea. Vomiting is possible, but she said it’s not as common any more. They include three anti-nausea/vomiting drugs in the chemo treatment (one for short-term prevention of nausea/vomiting, the others for long-term prevention), and I’ll also receive prescriptions for more anti-nausea medications to take at home. She told me it was best that if I woke up the next day with a feeling of nausea I need to take the anti-nausea medication ASAP, to prevent the nausea getting worse, because it’s a matter of staying ahead of it. In addition to the nausea and possible vomiting, I may also experience a lack of taste or food may develop an odd or metallic taste for the day or so following the treatments, but those are temporary.

Basic advice was to try to keep my life as “normal” as possible while undergoing chemo treatments. This means I’m to continue rising at a regular time each day and performing my daily habits. I’m to go grocery shopping (though preferably not around the tenth day after treatments), and I should likely stay home on any square dance night which falls around the tenth day of treatments, to ensure I don’t get ill. However, every other Tuesday of the month, I’m to continue dancing as usual, because keeping spirits up is important.

I’m surprised I remember so much. Anyway, I’ll be getting all this again before treatment, in writing as well as in another discussion.

Next step toward chemo treatment is having a heart test done. Either EKG or the other test (which I’ve forgotten the name of) which was called by a different name. They need this as a baseline because the chemo can affect my heart. I’m to call the hospital tomorrow for my heart-test appointment, and, today, I also had a blood test done, for a baseline reading of everything, which passed.

I hope things go well.

The Beginning

This entry is part 1 of 44 in the series Breast Cancer Posts

I found the lump in my right breast in the wee hours of 6 August 2013.

Oddly, realizing it was there didn’t keep me awake that night. I’d discovered it while laying in bed, and I told myself, “I’ll email my primary care doc directly tomorrow when I get up.” If you’re a veteran, and you’re getting care at a VA hospital, they encourage you strongly to sign up for the VA’s veterans’ health care site, myhealthevet.com (I’m not linking it because it would be useless for pretty much all readers here; suffice it to say the site enables you to contact your care team, do things like record food intake and exercise, and order prescription refills). Normal procedure, since my primary care doc works primarily for the University and its hospital and sees VA patients only on Thursday mornings, is to use the site to send a secure email to my doctor. Problem with this when I found the lump was that the email goes through her nurse, and she might not get the message until she got to work on Thursday, and I needed to tell her as soon as possible. Luckily, my primary care doc had given me her business card, with her direct email address, so I used this.

A week after the Thursday following my discovery of the lump, I was at the VA to see my doc on a squeeze-in appointment. First an intern did the breast exam thing, then my doc came in after I chatted with the intern, and my doc did another exam and we discussed what would be happening.

Next step happened to be getting a mammogram, and I got an appointment up at the Huntsman Cancer Institute, taking over a spot left by someone else’s cancellation. There, I had a mammogram, which led into an ultrasound, and then a biopsy of the lump in my breast and one they discovered on the lymph nodes under my arm. The biopsy was a relatively simple procedure complicated slightly when doing the breast lump because I’d given permission for a resident doctor to perform it (because the guy has to learn somehow). Overall, the procedure was faster and easier to endure than I would have expected.

I went home that day (it was another Thursday), and cried. Having the biopsy, and especially after all I learned and saw about my lumps while I was there, brought home the possibility of cancer. Until that point, I’d been able to get by with the thought it probably wasn’t cancer. But after hearing the doctors and assistants and technicians attending to my care discuss the fact the lump was not regularly-shaped and was solid and firm, not squishy or as if it were full of liquid, and, especially after discovering the lump on my lymph nodes, I couldn’t help but assume it was in fact cancer.

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