Week 39, monday morning: i call the radiation oncology department to update them on the gross condition of my skin, and to ask if i can come a little early so that someone can look at it before my treatment. i arrive fifteen minutes early, change into the usual gown, and one of the techs leads me down the hall to see one of the nurses. "now, i realize that this is probably [air quotes] NORMAL [/air quotes]... but this is NOT normal for me." the nurse laughs at my air quotes and takes a look. she is not fazed and explains that yes, moist desquamation is not uncommon. (side note: "moist desquamation" is a phrase that is almost, but not quite as gross, as the actual condition it describes). i tell her that it doesn't hurt too badly -- i am, after all, mostly numb under there -- but i could really do without the area getting infected, as i am already getting swelling in my arm and hand on that side (insert gesture towards my compression-sleeved cyborg arm). she says that she will talk to dr. d about creams and dressings while i am having my usual treatment. for the last four weeks, i have always met with dr. d after monday treatments; unbeknownst to me, this week i was not scheduled to see her until wednesday, so i am glad i called beforehand. as i clamber onto the radiation table and the techs help position me, i announce, "just for the record, no offense or anything... but i am totally over this." they offer their understanding and encouragement. more importantly, one of the techs tells me that this is my last week of regular radiation, and the final week consists of five "boost" treatments, which will mainly be directed at my surgery scar, and should NOT include the problem area under my armpit. this suddenly makes things feel more bearable for me. in the middle of my seven zaps from The Baconator, dr. d pops in before the bolus placement so that she can take a gander at my skin. after treatment is finished, i head back down to the exam room. the nurse said that dr. d called in a prescription for silver sulfadiazene (the brand name is silvadene, which i will call it from here on out), which is a topical cream with antibiotic properties, commonly used for burns. she also gave me a few packages of mepilex, which is a thin silicone foam dressing that sticks to skin, but doesn't hurt when you peel it off. there are several sheets, which can be cut to form as needed. perfect. i head out, pick up the prescription, and head home for lunch and to get (my armpit) dressed. i am surprised and thankful that applying the silvadene cream to this weird looking wound doesn't hurt or sting. unfortunately, i keep lowering my left arm, so i am constantly wiping silvadene off of my upper arm during the application. i cut a piece of the mepilex down to size, and andy assists me in placing it just under my armpit, across the freshly applied cream. it sticks well to the moist areas (sorry, gross), though the parts on dry skin are not quite as adhesive, and slightly floppy. but it's under my ARMPIT, so there's going to be a lot of movement and pulling. at any rate, it feels good to have the area protected under a dressing.

then it's off to physical therapy. arm bike, pulley stretches, then into the exam room to get measured. she again measures in 4cm increments from my hand to my armpit. i raise my eyebrow as she finishes. "aside from your hand... everything seems to have gone down." i am sad about my hand but still happy at the mostly good news. she does some manual therapy for my muscles and then i am on my way. between the reassurances and boost reminder and prescription and dressings and measurements, i am starting to get out of last week's funk.

on tuesday, i realize that i don't really know how to prepare for my radiation appointment. i know that i shouldn't put more cream on within four hours beforehand, but how does this all work? do i wear my dressing? i call again and receive answers: don't add new cream, no dressing during treatment. okay, awesome. so my new normal now involves cutting a piece of fresh dressing to size before i go, putting it into a ziploc bag, taking it with me. in the dressing room, i take off the old dressing, toss it, get treatment, then apply the new ziplocked dressing (sans silvadene) as i get dressed again. then when i get home, i add the silvadene and reapply the dressing. it's just as fun as it sounds, every bit of it.

wednesday is my weekly meeting with dr. d. i am guided to an exam room after treatment, and she assesses my skin and the situation. she asks about pain? i shrug. it's incredibly unpleasant, but ibuprofen and acetaminophen are doing the job. she insists that i let her know if i ever need something stronger. i ask her what my options are, letting her know that norco (hydrocodone/acetaminophen) does not agree with me, and she mentions a couple of options. i ask her what i should expect with my skin? she says that since this is my last week of radiation before the boost treatments, and reactions tend to peak 7-10 days after treatment, the last weekend in may will likely be the worst of it. i look at the calendar and imagine a week and a half of steadily growing unpleasantness and wonder how i will bear it. the answer is meaningless, because i have no choice. and so i will bear it. i remind myself that this is a short blip in my life, even though at the moment it is all i can see. since i have a physical therapy appointment immediately after this, i ask for some assistance with dressing application. a younger nurse shows up with packages of new dressings and scissors. she cuts a piece to size as i grab exam gloves and apply the silvadene. she hesitatingly helps apply the dressing, and then i am off to physical therapy, shoveling a sandwich and chips down my throat on the drive over. arm bike, pulley stretches, then into the exam room to get measured. she measures about every 12cm this time, just to get a general update. unfortunately, everything has increased, though not by much. together, we decide to stick to lymphedema management for the foreseeable future. we chat as she performs the drainage therapy, and i feel slightly untethered that it will be a full week until i see her again, due to memorial day on monday. i reflect later that she is the healthcare provider that i have logged the most hours with, by far, during this whole adventure. i suppose this time period of social distancing is the perfect time to chat with another human outside of your household while doing exercises and therapy in fifteen minute increments. at any rate, i am thankful for her.

thursday: birthday! over the course of the last cruddy week or so, i have taken to not getting dressed properly before starting work -- just throwing on pajama pants and not changing until immediately before going to radiation. i make a comment about my lazy wardrobe habits during breakfast, then head upstairs to work. shortly before 9 o'clock, andy comes into my office. "i don't want to ruin the surprise, but... i feel compelled to tell you to put some outside pants on." okay then. a few minutes later, there begins a parade and honking of epic proportions on our street. many of my colleagues have emerged from their home offices and organized to throw me a quarantine birthday parade. holy cow. over a dozen vehicles drive by, horns a-honking, greetings shouted, birthday banner unfurled. i see them all again and shout gratitude as they loop back out from the neighborhood (still honking). it is a grand gesture, and reminds me how awesome these people are. one of my neighbors across the street comes out and wishes me happy birthday. "thanks! HOW DID YOU KNOW?"

later, of course, is radiation. i change the script up a little today -- "i was born forty-one years ago today, and yes, that is my picture" -- and they ask me about birthday plans. among other things, i respond that we may have a driveway visit with some friends later in the evening.

me: "i know i get out of the house every day, but i thought it might be nice to talk to people who AREN'T medical professionals... no offense."
tech #1: "oh, none taken."
tech #2: "heh. she called us professionals."

as we are getting set up, tech #2 sees my underarm area and asks, "uh... when is the last time she saw the doctor?" i tell him i saw dr. d the day before, and i have silvadene and dressings in my possession. i finish with The Baconator, and ask if i can see the doctor or a nurse. with the long weekend coming up, i decide that even if i don't end up using it, having some pain meds around might not be a bad idea. they arrange for dr. d to send a tramadol prescription to my pharmacy, and i am on my way. i return home to work for the afternoon, and near the end of the day we order a takeout birthday dinner from z cucina, complete with cabernet sauvignon. later, we take a short drive to visit friends in grove city. thankfully the rain holds off, and we are able to socially distance in their driveway without having to shout through the car or over the sound of falling rain. we return home, and i begin my nightly shower routine.

ever since my skin started peeling, i have taken a nightly shower to keep everything clean, and also, there is no way i am getting up early to do this. the whole thing is a CHORE. it takes about an hour from start to finish. there is the shower itself (done carefully), then the drying off (also done carefully), then the cutting of the mepilex dressing, then the application of silvadene, then recruiting andy to apply the dressing, then applying aloe and/or hydrocortisone to the affected-but-not-peeling irradiated areas... it's just a lot. at some point this week, i recall saying, "i remember when i used to ENJOY taking a shower." also, the area that is peeling keeps growing, so that's a really good time.

on friday, my temperature is taken at the door by the younger nurse who helped me with my dressings on wednesday. this is good, because i wanted to get some more dressings to get me through the long weekend. i ask her if i could have some ready for me after today's treatment. "i mean, that area ain't gettin' any smaller." she looks alarmed. "oh, is it getting worse?" "well... i mean, more skin is coming off, but i think that's expected. it depends on your definition of worse?" she asks if i want to see the doctor after treatment. i didn't think it was necessary, but i shrug and say sure, why not. so i go in for my last full Baconator treatment, and head down to the exam room afterwards. i show the younger nurse how the peeling has progressed, and she is surprised that it didn't hurt much and wasn't bleeding. "dr. d is in dublin right now, but i can text her to see what she thinks. meanwhile, i'm going to grab another nurse because i'm sort of new to this, and i'm not sure what to look for." OHHH. everything makes SO much more sense now. she was vaguely hesitant that wednesday with the dressing; her alarm about the area growing worse was surprising to me; and her asking if i wanted to see the doctor even though it seemed unnecessary... it all makes sense now. bless her heart. an RN comes in to check me out, and she seems unfazed. "from what dr. d said on wednesday, i figured this was.. normal?" the RN laughs. "yes. pretty normal. i have seen much, much worse." which, partly yay, partly terrifying? but "normal" is good. the younger nurse comes back with a number to call over the weekend if i need anything, and let me know that dr. d happens to be the radiation oncologist on call this weekend, so that is comforting. i get a few new packages of mepilex dressings, chat with gayle at the front desk for a bit, and am on my way. that evening is birthday leftovers and some board gaming.

saturday morning, andy ventures out into the world to procure, among other things, a new dehumidifier for our basement, as our current one is borked. i stay home and sort out some photos and photo albums and otherwise relax. in the afternoon, we participate in a birthday.. well, not quite parade, but more of a drive-by open house, for one of our nieces. we stop to talk and chat a bit from our car, then visit andy's parents for a brief socially distanced visit outside on the deck. later, i am mostly in the mood to not move around too much, so it is mostly youtube, reading, relaxing, a shower, and then a short board game together.

today has been a lot of not moving around much. partly because of soreness and partly because moving shifts the dressing around a lot, and that is super annoying. we have currently fashioned a weird little sash from a body pillow pillowcase, to keep the dressing pressed against me (since i can't feasibly tape it down to any nearby skin). i look like a crazy person, but it seems to be working. it has been over a week since the beginning of moist desquamation (again, gross, sorry), and it looks like i have another week of it getting worse before it gets any better, which, i am not even sure how it can get worse, so that should be a fun mystery experience. i am managing fine with ibuprofen, the whole thing is just very unpleasant and uncomfortable. as it turns out, i am one of those for whom radiation is NOT easier than chemo. SAD TROMBONE. but there is light at the end of the tunnel, and i am very much looking forward to NO MORE RADIATION AND NO MORE RADIATION SIDE EFFECTS. i continue to be oddly thankful for stay-at-home orders, as i cannot imagine going through this while trying to go into work like some sort of professional normal person in dress clothes. due to memorial day, i won't quite be done with radiation this week, as that last treatment will be moved to next monday. but, we're getting oh-so-close. let's do this.