NED

hello, friends. how have you been?

technically, i am writing this at the beginning of Week 51 of Cancer Land. the past seven weeks or so have been mostly uneventful; just chugging along in this mess of 2020. Week 44 included another zoladex injection, and Week 45 involved a fourth of july camping weekend of epically humid and sweltering proportions. (the continuing hot flashes did not help).

Week 46 brought an unpleasantly abrupt end to covered visits with my physical therapist, due to faulty verbal guidance from my insurance company. fortunately, this rehabilitation office also provides occupational therapy, which can also help with my current arm and shoulder issues (aside from the lymphedema), and which my insurance covers for an equal amount of visits as physical therapy. as it turns out, my occupational therapist has walked a similar path to my own (breast cancer, chemo, surgery, radiation, lymphedema), so we have plenty to talk about. on another level, there is plenty to NOT have to talk about; experiences that we both already understand, no explanations needed. it is curiously comforting. at this point, i am basically part of the scenery at this office, as i've been going there since april. given the isolation of the pandemic, andy gets somewhat jealous as i leave for therapy appointments. "you get to see your friends today?"

the most exciting thing that happened in Week 47 was that i got the air conditioning in my car recharged. BLESSED RELIEF. Week 48 was a four-month checkup with dr. h., my surgeon. no visitors allowed, so andy joined via telephone. i cracked up inwardly again as she confirmed how great my scar looks. again, she's not WRONG, and i'm happy to let her admire her handiwork. we talked port removal and breast reconstruction, among other follow-up topics. "so, have you been exercising?" "oh, of course! i've been working on all of the physical therapy arm exercises at home." dr. h., confused but kind, paused and looked at me like the idiot i am. "no, i mean... like, getting your heart rate up. exercising, working out." "oh! yeah, no, not really." she didn't seem to think that walking downstairs from my office to the kitchen counted as exercise, so i guess i need to step up and increase the neighborhood walks.

the week ended on a less than ideal note when a tractor-trailer tried to turn onto our street that friday afternoon, accidentally dragging down a power line and evidently uprooting the pole right along with it. all the neighbors were out; it was a sight to behold. the afternoon and early evening came and went; lots of AEP trucks, but still no power. of course, it was approximately a zillion degrees, so we eventually busted out two dozen LED tealight candles from the wedding and filled up the queen-sized air mattress for some "camping" in the basement, where it was blessedly cool. the power kicked on around 3am, though by that time, the pumps in our fish ponds had been out for at least twelve hours in the heat of the day. so that's the story of how a semi-truck driver indirectly killed two of our goldfish.

during Week 49, i had appointments on four out of five weekdays. monday and wednesday: regularly scheduled occupational therapy. tuesday was a follow-up CT scan, located at the imaging center on the second floor of the oncologist's office building. i had never been upstairs before, but found the elevator, made my way up, and settled in for some heavy drinking. the nurse brought in my 1.5 liters of contrast water (i went with flavored this time - crystal light raspberry), along with the usual instructions, and some bad news. "so, the CT scanner is currently down. but we're hoping it will be fixed by your scheduled scan time!" i wasn't too worried, as i had at least an hour and a half of water chugging ahead of me, though i was definitely not optimistic. as it turns out, neither was the technician who walked through about an hour later. just as i was downing the last of my contrast water, the nurse broke the official news to those of us who were busy hydrating: no CT scanner fix today. sad face. but they had arranged for us to get our scans immediately at riverside/bing, about a five minute drive, so off we all (separately) went. this is where i had my PET/CT scan in september, so the office was not unfamiliar. during check-in, the nurse asked if i had a port. i raised my eyebrow and answered yes. the first time i had a CT scan, they didn't access my port -- because i didn't have one yet. it hadn't occurred to me that it would be used for this scan, so i hadn't applied any numbing cream to the area. i was fairly unhappy about this, as i had never used my port without any numbing cream, and no one had thought to tell me it would be used for the contrast injection. but, again, i wasn't too worried... after all i have been through, what's a little needle stick? (says the girl who had never even had an IV placed before last september). but still, i was irritated, because it could easily have been avoided. anyway, i drank a little more flavored contrast water (lemonade flavor this time), as i waited for a nurse to access my port. it was unpleasant, but not terrible. (the needle, not the water). then it was into the CT scan. i laid down on the table, and the very perky and extroverted nurse covered my lower body with a standard hospital blanket. then he had me shimmy my shorts down to my knees to make sure no metal would show up on the scan. he reminded me that when they inject the additional CT contrast through my port, it would feel warm, and it often makes people feel like they are peeing their pants. i noted that having your shorts down to your knees surely doesn't help reduce that sensation. anyway, they slid me back and forth through the CT donut, as i held my breath at the appropriate times throughout. the last scan was done after getting the contrast injection through my port: warm peeing feeling, one last slide through, one last breath hold, and i was done.

two days later, on thursday, my last appointment of the week was with my oncologist. after we were checked in by a new and rather confused receptionist, the first activity of the visit was a blood draw (through my port, and i DID apply numbing cream that morning). next up was the office visit with dr. m., which is really why i am writing. she confirmed the medical gobbledy-gook of the CT scan results i had received in my chart on wednesday: nothing new or progressing was found on the scans. cancer-free, in remission, whatever you want to call it. i prefer 'no evidence of disease' (NED, for short)... very happy to welcome my new friend NED. as a side note, the results noted that many of my internal organs were "unremarkable". under normal circumstances, i would be offended, but in this context, i am happy to be "unremarkable". we also discussed starting exemestane, the daily hormone therapy pill, to keep my level of estrogen (cancer food) down. (notes from the future: after a week on exemestane, i have not yet noticed any side effects). we discussed the removal of my port. i inquired, with raised eyebrow, "what are the chances i would be needing one in the next year or two?", trying to get her thoughts on my chance of cancer recurrence. dr. m. shook her head without a second thought. nope. no reason to keep it. well, if she's confident, then i'm confident... i will return to dr. h's office at some point to remove the port.

i will continue to see dr. m. every twelve weeks or so for the foreseeable future. but other than an upcoming mammogram (has it really been almost a year since this all started?), and a bone density scan in a few weeks, it seems like any future scans will just be on an as-needed basis, in the event that dr. m. or i notice anything weird going on. no more blood draws needed, but i will continue to return every four weeks for a zoladex injection (which also keeps my estrogen levels down, in a different way than the daily exemestane does). this will basically be the way of life for awhile (five to ten years?), unless we decide to give my ovaries a permanent, surgical farewell. it's more or less the ideal, hoped-for ending to nearly a full year of medical madness and appointments. i'm thankful for all of my medical providers, and for all of you, as i land safely across the shore from Cancer Land. new endings, new beginnings. let's do this.

Posted on Sunday, August 9, 2020 at 04:52PM by Registered Commentermdog in | CommentsPost a Comment

closure

things keep looking up in Cancer Land. (i suppose i'm still technically in Cancer Land until future tests show NED -- No Evidence of Disease). throughout all of Week 43, there was still open skin and cream and dressings, but each day, there was continually less and less of all of these things. i was also able to position each of the mepilex puzzle pieces so that they were no longer needed on skin folds or places where my muscles or my arm would pull or rub, which resulted in a lot less of the dressings shifting and falling off. after my shower on saturday night, five weeks after the moist desquamation nightmare began, i declared it official: NO MORE DRESSINGS NEEDED. i have a mix of bright pink, newly formed skin, along with patches of mottled pink and grayish skin, along with dry, peeling areas all over. generally, it all looks like a hot mess, but everything is closed up and the tylenol has been abandoned. i still get twinges of pain, but only when i make certain twisting or stretching movements and my muscles are like, whoa, you've been ignoring us for WEEKS if not months, CALM DOWN, superstar.

physical therapy continues. i returned to pulley stretches on monday, and on wednesday also got some lymphedema measurements again. my left arm is actually smaller than my right at this point (good news!), though my hand is still retaining fluid (unsurprising result, as i still can't see the tendons on the top of my left hand). since my skin is now closed up, this week my physical therapist will be able to teach me some self-massage for lymphatic fluid drainage. we will also return to some range of motion work, as my arm and shoulder were never quite where they needed to be before all this swelling and skin sloughing, and now are just in need of all kinds of stretching and exercises. oh, to be able to reach for things in cabinets again!

in other news, i had several posters lying around that i never got around to framing (like, i'm talking YEARS here) because some were weird sizes. i finally found and ordered some frames, and measured and hung them up in the home office this week. my zoom calls should be much improved, or at least less like i'm recording hostage videos in front of a blank wall.

i feel like this is the place to close the documentation of the large chunk of time that ranged from cancer diagnosis through major treatments through physical recovery. there will still be hormone injections and pills, and follow-up appointments and scans, for... ever? a long, long time, at least. hopefully, i will forever be on the outskirts of Cancer Land, though i know it will always be nearby, lurking in the shadows. the weekly numbered posts will likely cease, though i will add informative updates as needed. this blog existed lonnnnng before Cancer Land, so maybe i will return to non-cancer related musings as well. my readership has broadened considerably since those days, which brings its own possibilities and pitfalls and positives and parameters. so, i'm not exactly sure what "this" is anymore, but... let's do this.

Posted on Monday, June 22, 2020 at 05:12PM by Registered Commentermdog in | CommentsPost a Comment

life, the universe, & everything

life has gotten much better during Week 42. somewhere around wednesday or thursday, radiation side effects seemed to stop getting worse. arts and crafts time started resulting in slightly smaller dressings; more and more mottled pinkish grayish skin kept forming all over. no more itching, and very little dragon skin is left.  i even wore some normal t-shirts. TWICE. amazing.

i got a call from one of dr. d's nurses on tuesday, for some preliminary questions before my follow-up visit on thursday. one of the questions was if i preferred to come in, or to have a telehealth visit? "uh... she's supposed to be checking out my skin?" "ah. well, i guess you could.. show her via video? that'd be weird, huh." "yeah, i'll come in." so it was back to riverside on thursday morning. dr. d was happy with my progress, and was amused by my dragon skin description. we discussed a follow-up appointment in four weeks or so to check up on my skin.

physical therapy was strictly lymphatic drainage massage this week, which was nice, because if i moved the wrong way, or too much, pain would rear its ugly head. because of the pain, i haven't been doing many exercises at home, or moving my arm (or anything else) much at all, so i have definitely noticed a reduction in awesomeness regarding strength and motion. at this point, my arm itself seems mostly fine, but now my pectoral muscle and side muscles need some extra stretching out. my ever-evolving physical therapy needs... who knew?

there have been some beautiful days lately, and though i can't remember which evening exactly, i know i took a walk on one of them. unfortunately, even just a very short walk resulted in pain enough to turn back, though we enjoyed the cooler temperatures and playing a new Which Houses In The Neighborhood Have The Same Design As Ours game. (the answer: more than we realized).

saturday was another day of perfect temperatures, and good timing for a niece's outdoor birthday party. it's always nice to see other humans nowadays. my hair continues to grow out, actually started getting a little unruly and fuzzy. i don't really know what i want to do with it ultimately, though i am totally enjoying the current length in general; it looks very much like an on-purpose haircut at this point. no styling! i can run my fingers through it! super cute! on sunday, i took andy's clippers and cleaned up the sides and back a little, and managed to snip around my ears with tiny scissors. i didn't take much off, just enough that i don't look quite as disheveled anymore. i think i did pretty good. maria do it by maria self!

i have to admit that i was partly compelled to post an update simply because it's Week 42... the title really just writes itself for any douglas adams fans out there. we'll see how long it takes for me to break the habit of weekly blogging. by this time next week, i should be free of the tyranny of silvadene and mepilex dressings. let's do this!

Posted on Monday, June 15, 2020 at 08:41PM by Registered Commentermdog in | CommentsPost a Comment

well done

monday, Week 41: first day of june.

monday, Week 41: last day of radiation.

in a spur of the moment decision, andy drives us to my last appointment. due to covid-19, as well as the daily nature of radiation, i have been driving myself to my appointments for the past six weeks. (this has deprived you all of our traditional treatment selfies, for which i apologize.)

everyone is all smiles and encouragement for graduation day. otherwise, all happens as usual regarding treatment. dressing room, gown, identity verification, table, stretch, scoot, attachment, Baconate, attachment #2, Baconate, done. i ask if i can get several more packages of mepilex dressings, since i will no longer be showing up on a daily basis with easy access to them. the tech who is perpetually concerned about my skin, bless his heart, walks me down to the nurses station so that someone can supply me with dressings and also check the nightmare of my current skin condition. the nurse shows a normal amount of concern and i can tell she feels bad about my ever-growing problem areas. "i get the feeling that most people don't have this much of an issue?" she pauses with a sort of deer-in-the-headlights look, and it's hard to tell with the surgical mask, but i'm guessing she is trying to figure out what response would be more comforting/appropriate to tell me. i don't remember if she actually ever gave me an answer. she gives me several packages of mepilex and we discuss getting me scheduled to see dr. d next week, just to check in on things. and then... i am done. i make my way to the dressing room, get myself changed, and head towards the lobby. andy is there waiting, as is gayle at the front desk, as i walk out and ring the Last Day of Radiation bell.

now, before i get any further, let me make this perfectly and abundantly clear: radiation can go fuck itself. "radiation is easier than chemo"? no. fuck that. not in my case. i told andy more than once that i would rather go back and have chemo again. without question. i can do tired, i can do hair loss, i can do weird things happening to taste buds and fingernails. i did NOT sign up for half of the skin on my chest to darken into a maroon desert-like crisp, for skin peeling off my body without fully formed new skin underneath, for creams and dressings and not being able to move easily or wear proper clothes, for sharp stinging shooting pain barely touched by medication. no. fuck all of this. i realized before, and even moreso now, that i tolerated chemo very well. not everyone does. i know this. i was lucky. if you are reading this and your radiation was more like my chemo (i.e. pretty easy), be as thankful for that as i am for my chemo. well, as thankful as one can be regarding shitty cancer treatments. i should note that i spend at least two hours a day tending to my ever-evolving skin situation. some of that is showering, some of that is arts and crafts time as i cut pieces of mepilex to try and fit whatever shapes i need at that moment, some of that is carefully wiping off old silvadene cream (which turns into a gross mucus-like goop by the time a dressing change is needed), some of that is carefully applying new silvadene cream, some of that is applying the arts and crafts jigsaw dressings over the silvadene, and some of that is just simply looking in the mirror going... "what the FUCK? how did i get to this place?" ...and that, my friends, is the reality of cancer, the reality of chemo, the reality of radiation. mine, anyway. good riddance.

the excitement of it being the last day of radiation causes me to ignore the very real physical pain that i am feeling. we head home, have lunch, and then i am back out for physical therapy. we chat as i use the arm bike as slowly as one could possibly imagine, and exert a similar amount of energy using the arm pulleys. i realize i probably should have cancelled today's appointment, as it is not urgent, but! last day! so exciting! eventually it is time for lymphatic massage and i am able to mostly just relax. i make it home, finish out the workday, and am as grumpy as i have ever been in quite some time, because i am also in as much pain as i have ever been in quite some time. as always lately, andy takes care of dinner and cleanup, and i survive the evening on tylenol and not doing much until it is time to shower, apply dressings, down some tramadol, and fall into bed. it was the best of days (no more Baconator!), it was the worst of days (WOW, the pain).

tuesday morning, i thankfully find that monday was probably going to be the worst of the pain. don't be mistaken, there is still pain (and indeed, there still is as i write this on sunday), but the intensity has decreased over the course of the night. eleven o'clock rolls around and it feels odd to continue working, instead of heading to radiation. not that i'm complaining, but, still weird.

wednesday is much of the same, but also a bit of the old routine: physical therapy. though even that is slightly different, as i am spared the arm stretches, and we focus on the lymphedema treatment. afterwards, i stop by the store for a few items, but mostly for a fresh batch of tylenol. i believe i had bought some shortly before surgery, and this has to be the first time in my entire life that i have finished a bottle of ANY over-the-counter pain medication and actually remembered when it was purchased (to be honest, they usually get tossed because they have expired). thanks, i guess, Cancer Land? as i walk around the store, i am reminded that i am generally in pain while just sitting at my desk or on the couch, and this whole walking around the store thing is something my body is not currently happy about. i quickly make my way to checkout and back home. dinner, board games, shower, dressings, bed.

i can't remember anything notable about thursday, so let's talk about my dragon skin, shall we? at this point, the portion of my skin that ISN'T peeling more or less has the consistency of a giant scab. except not one giant scab, more like... picture a dry lake bed, all the moisture evaporated from it, tiny dry channels creating tiny dry areas left behind. got it? yeah. as you might imagine, this is not pretty or comfortable and all of it is itchy as hell. there are some portions that are beginning to flake off, and this is the day i begin to lightly remove a few of the obviously flaked portions, only to reveal... new intact skin underneath! granted, it is sort of a mottled pinkish grayish color, and is still pretty sensitive, but it is actual closed skin, and i am pumped. forward progress! i mean, the other areas hit by the boosts during the last week are still gross and only getting worse, but i'll take what i can get.

on friday, i realize that i am going through dressings like wildfire, and call up the radiation oncology department to arrange to pick some up before the weekend. actually, i call twice, so i can upgrade my order... i did the math and figured i should get enough to hold me over until my appointment with dr. d next thursday. as it turns out, old habits die hard, and i find myself leaving at 11am to pick them up. it feels like an appropriate way to round out the last week of radiation.

this weekend has been pretty chill (inside, not outside. outside is HOT). a mix of sleeping in, playing board games, observing carpenter ants, grilling out, church, exercises, and, of course, writing. speaking of which... i'm not quite sure how i will be proceeding with writing here in the future. i will continue to have twice weekly physical therapy sessions until my lymphedema and range of motion issues are resolved; i will continue to have monthly zoladex injections; i will see dr. d next week, dr. h in six weeks, and dr. m at the end of july; and i will have a ct scan in july as well. maybe i will continue the weekly entries? maybe they will be more sporadic, and updates given as events warrant. maybe i will return the blog to what it used to be -- assorted ramblings about life. maybe i'll get introspective. it's a little unclear at the moment. i know that i don't have the energy to tie a big red bow around anything tonight, but i'm sure something will eventually percolate. for now, it feels nice for Week 41 to be the last entry of intense cancer treatments, after recently turning 41; it feels as though i have lived an entire lifetime over those forty-one weeks. thanks for coming along. whatever it is that happens next: let's do this.

Posted on Sunday, June 7, 2020 at 07:14PM by Registered Commentermdog in | CommentsPost a Comment

40

this week, Week 40, has mostly been a blur of dressings and silvadene and showers and ITCHING. oh the itching. memorial day, if i recall, was much like the rest of that weekend: staying inside and not moving around too much. it was a nice day, so we (read: andy) grilled some ribeyes for dinner.

tuesday is back to the daily radiation grind, though with a slightly different process, since we are moving on to boost treatments. i take my usual position on the table, though i am allowed to put my left arm into a little less extreme stretch than the previous five weeks. the techs scoot and slip me around into position. once they are satisfied, one of the techs informs me, "since we don't want to put new stickers on your skin, i'm going to be drawing some blue lines on you with a paint pen." okay then. i can't really see what he is doing because of my surgical mask, but it definitely smells like arts and crafts time and it definitely feels weird on my sensitive skin. meanwhile, the techs are also fiddling with The Baconator, as the boosts require an attachment (they also refer to it as a cone) to focus the zaps. usually, when i am laying on the table and The Baconator is in the default position, it is.. i don't know.. a foot or two above me? with the attachment in place, i can't even see the bottom of the attachment (see again: surgical mask), but i am told it is only a few inches above my skin. no sudden movements! the setup takes awhile. eventually, i get two zaps, each one lasting about 25 seconds (at least i don't have to hold my breath for these). the first zap comes from The Baconator's default position plus attachment, aimed directly at what must have been a suspicious looking lymph node, located near the middle of my chest. the second zap, which requires a switch to a different but similar attachment, comes with The Baconator positioned about 45 degrees to the left, the attachment mere millimeters from my left arm, and is aimed at the entire length of my surgical scar. from this angle, i can sort of see a frosted-looking square block that slides into the bottom of the attachment, with a cutout in the shape of my scar. kinda weird. and then that's it. the table slides out from under The Baconator and i am about to swing my legs off to leave, but the tech stops me. "hold on, we need a picture." i am a little confused, because usually they say "image," and usually it is taken by The Baconator itself. nope, this one is just the techs using a simple point-and-shoot camera, presumably to capture my new blue marks, and i finally see them and WHOA those are some bright royal blue markings. it makes sense... black would have been hard to see against my poor, now dark maroon, skin. it feels like a slightly weird hostage situation, but i can only presume nothing nefarious will happen with these pictures.

on wednesday, radiation goes much quicker, though there is still some shifting and shuffling to get me in place. afterwards is my weekly visit with dr. d. she examines my skin and tells me that it looks like the area under my armpit doesn't look like it will spread much more. however, the other side of the radiation field, near the center of my chest, is looking a little blistery. "yeah, if those areas open, you can go ahead and put the silvadene on them as well." YAY MULTIPLE SORE SPOTS AND DRESSINGS TO MANAGE. she assists me with placing the dressing back on after i apply silvadene, as i am heading straight to physical therapy after this. similar to last week, i shove a sandwich, chips, and drink into my mouth on the fifteen minute drive, and arrive only a couple of minutes late. i half-heartedly arm bike and do pulley stretches, as i am just generally sore, but i admit i haven't really been doing much in the way of PT at home, so at least getting things warmed up and stretched is a good idea. no measurements today, just lying down and letting her lymphatic massage wash over me.

thursday morning, the numbing cream and press and seal makes an appearance: back to dr. m! well, technically, i'm not seeing dr. m, but i am going to her office to get a port flush and my second zoladex injection pellet thingy. i tell the nurse that i received the first injection on the right side of my belly, and i know they usually like to switch sides, but my left side is going through enough already with radiation, so can we just do the injection on the right side again? she says of course, as i show her the deep shade of red my radiated area is currently sporting. as she sprays the super cold numbing liquid on my belly (which, i must say, she does in a much slower, tolerable, and comfortable rate than the previous nurse), she shares about her own radiation experience. we both express agreement that the whole "radiation is easier than chemo" is a terrible lie for both of us. it is sort of comforting to be attended to by someone who has waded through the same crappy waters. afterwards, i treat myself to some starbucks, then it is back home for a bit, and then off to radiation, which goes pretty quickly.

on wednesday, i had mentioned to dr. d that i filled the tramadol prescription, but hadn't used it yet. she sort of recommended that i try it, so that i would know if it works for me or not. i had held off, because the usual ibuprofen and tylenol were working well enough. but the areas of peeling had spread to places where i wasn't numb from surgery. so on friday, i head to radiation as usual, pick up some more mepilex dressings for the weekend, then come home, have lunch, down some tramadol, and sleep for most of the afternoon. on the positive side, aside from a slight bit of swimminess, i don't notice any real side effects. on the negative side, the drug isn't quite as magical as i had hoped. it sort of cuts the edge off the pain, but doesn't seem amazingly better than what i had been using. 

saturday i sleep in good and long. i am sad to discover that the crusty blistery stuff has begun to reveal the skin underneath... sigh. more dressings to cut and to try to keep on my skin. i also discover that tramadol decreases my appetite somewhat, which is fine? but weird. anyway, it is a gorgeous day, and we throw the windows open, so at least i feel like i am communing with nature somewhat. andy actually does stuff outside, but i continue with my not-moving-a-lot and napping-quite-a-bit routines. later, we have a friend over for a socially distanced firepit chat, which is a nice change of pace. FRIENDS! REMEMBER THOSE?

today was our traditional online church while stretching and exercising. i took a giant nap in the afternoon amidst running laundry and trying to blog. i switch from tramadol to aleve, which seems to work just as well, but without the drowsiness and swimminess. another gorgeous day, more windows thrown open, some pork steak grilling was definitely had.

tomorrow is my last day of radiation.

let's do this.

Posted on Sunday, May 31, 2020 at 12:55PM by Registered Commentermdog in | CommentsPost a Comment

dressed up

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.

Posted on Sunday, May 24, 2020 at 07:24PM by Registered Commentermdog in | CommentsPost a Comment

layers

another week in Cancer Land, another blog post. monday began week four of radiation, and i am happy to be past the halfway mark. my skin is getting tight in some spots, making the daily radiation position kind of a chore. i go through a range of stretches every morning at home, pre-treatment, to loosen things up. it is a slow day for some reason; the radiation tech doesn't come to retrieve me until the time when i am usually done. i know i'm in for a wait when i walk into the dressing room area, and the woman before me is still waiting. i change, come back out, and try to make a little small talk, though she doesn't seem super interested. i learn she is in week two out of four of radiation treatments, and then she is whisked away by a radiation tech. eventually, it's my turn, and then it's my weekly meeting with dr. d. we have a brief check-in via ipad, then she comes in to examine me. i update her: much redness, but no pain, no itching, and also some weirdly dark skin in my armpit. she inspects the dark skin and says she expects me to have some dry peeling there. awesome, that sounds fun.

later in the afternoon, it is back out for physical therapy. arm bike, pulley stretches, then into the exam room for my manual lymphatic drainage treatment. with the arm sleeve and gauntlet i ordered, the swelling doesn't seem to have gotten any better, but it doesn't seem to have gotten any worse, either. i discuss getting a glove, instead of just a fingerless gauntlet. i recently discovered that compression garments are covered by my insurance, but i can't just be reimbursed; i have to jump through a couple of (easy) hoops. after this appointment, i arrange to get a prescription (hoop #1) from dr. h, so that i can order a backup set of garments through a medical supplier (hoop #2) located at the cancer center.

tuesday is a quick in-and-out radiation. in the afternoon, i have a slightly confusing interaction over the phone trying to order my compression garments. i get the feeling that they mostly deal in wigs and prosthetics, and lymphedema sleeves are not a super commonly ordered item here. i hope that i will receive my items? the correct ones? sometime?

wednesday is another small talk waiting room day in radiation oncology, which makes my day slightly more time crunched. i finish, head west, pick up the lunch i pre-ordered, drive to physical therapy, scarf down my pulled pork lunch, head in to physical therapy. arm bike, pulley stretches, new resistance band for bicep curls, then into the exam room for more lymphatic drainage. we discuss the state of my arm, mainly that it doesn't hurt quite as much, though that may be a positive side effect of the compression sleeve. there are definitely still some cords in there, though they seem to have loosened up somewhat. the plan is to re-measure my arm on monday, and if the swelling seems to be better or steady, we will go back to trying to loosen up my arm again. then back to lymphatic drainage on wednesday to get me through to the next monday. i am on board.

thursday: radiation. later in the evening, i notice that my fingers and knuckles are quite swollen, which freaks me right out. i switch from the fingerless gauntlet to the glove borrowed from physical therapy, which helps by the time bedtime rolls around, but i am still freaked out. WAITING IMPATIENTLY FOR MY GLOVE TO ARRIVE.

the administrative assistant in the radiation department is a diehard cleveland browns fan. as a result, the dressing room is a curious mix of biblical imagery, cancer pamphlets, and browns decorations. on friday, i decide to show camaraderie, and put on my finest browns color rush jersey. when i walk in, i am greeted by someone i have never seen before. "wha.. gail isn't here today?" "no, she took the day off today." SAD TROMBONE. the ONE day during my treatments when she isn't here. alas. radiation goes smoothly, and week four is in the books. later that evening, we pick up some pho for takeout, play a board game, and watch an episode of "the great" (a highly anachronistic and occasionally accurate, but so far entertaining series, loosely based on peter and catherine, emperor and empress of 1700's russia).

after rolling out of bed after 10am on saturday, there is some breakfast, some chilling out on the couch, and eventually some lunch. the afternoon is spent cleaning up the garage and tossing out random stuff from the previous owner (note: it is almost two years exactly since we purchased this fine abode). napping happens, then it is time for a shower. i note that some peeling is starting to happen in my underarm area, though it isn't what i would classify as dry (as dr. d mentioned). maybe it is considered dry in medical parlance? whatever it is, it is an incredibly unpleasant feeling, both physically and mentally. two more weeks of radiation isn't going to help. we will see what dr. d recommends on monday. i try to keep my left arm from pressing directly against my armpit/side while sleeping, which as you can imagine, is sort of weird, and not easily done.

sunday morning we church it up with central city whilst each doing our now-tradition of stretching and exercises. after this, i church it up with central athens whilst putting photos into an album. then it is lunch and napping while andy takes a walk. the nap is partly for tiredness and partly for just not wanting to do a damn thing. the peeling in my armpit area is gross and it hurts, and getting an infection certainly won't help my lymphedema issues/fears. every time i take my glove or gauntlet off and bemoan my lack of visible tendons and knuckles, or note the presence of general soreness when i use my hand, i catastrophize and imagine a future where i can't play guitar or bass or do simple home improvement projects without pain, and have a stupid looking swollen hand and limb, and honestly, it's pretty distressing. i realize the swelling is likely temporary from radiation. but? it might not be. mostly i've just been having a sad little pity party for myself this weekend. as i have mentioned in the past, i don't do pain well, and as it turns out, the thought of dealing with long-term health issues isn't really my bag, either. but welcome to cancer. long after chemo is done and ports are out and surgery is over and the radiation burns fade away, it will always be there, lurking: physically or mentally, in one way or another.

i'll get over this funk and out of radiation soon enough. (i think after 38 weeks of this slog, i'm allowed a funk or two). but right now i'm more than a little grumpy, and unsure of what is in store for my body during the next few weeks. i'm not happy about swelling and pain. but i'm here, and i have an andy, and i have people, and we have jobs, and we have insurance, and we have a kickass little house, and we have all these things and more. i'm not looking forward to you, Week 39. but let's do this.

Posted on Sunday, May 17, 2020 at 07:54PM by Registered Commentermdog in | CommentsPost a Comment

resistance is futile

over the weekend, i noticed that the slight pain on the top of my hand was getting worse, and also that there appeared to be some swelling. by sunday, i could barely see my tendons at all when flexing my hand out. not a good sign for someone who has had lymph nodes removed -- lymphedema is a condition which can become irreversible if not monitored and treated when symptoms show up. basically, fluid (lymph) filled with infection-fighting white blood cells runs through your lymphatic system, and lymph nodes act as a filter to get rid of bacteria and waste before the fluid returns to your bloodstream. however, when lymph nodes are removed (six for me), the process can get screwed up in that area of the body, and the node-less section of the system can get overwhelmed. excess protein-rich fluid can start leaking out into nearby tissues and areas around the tissues, causing swelling (lymphedema). no bueno.

physical therapy was already scheduled for monday afternoon, so i was happy to be able to address all of this at the start of the week. first things first though: back to radiation on monday morning, then another hybrid ipad/in-person meeting with dr. d. she examines my skin and says that i was about where she expects me to be, regarding redness and tightness. "so i'm average, huh?" "yes! but average is good. we don't want unexpected things." she suggests getting some hydrocortisone, even though i wasn't experiencing any itching... but i assume she has seen this a million times before, so i heed her advice. from there, another quick lunch (this time, i order ahead and have a chopped brisket slider and mac and cheese from dickey's barbecue pit -- pretty good, and a welcome change to mcdonalds. still have to eat it in my car in the physical therapy parking lot, like a hungry squirrel). as i walk into the main room with the physical therapist, towards the arm bike, i hold out both of my hands to display my tendons and/or visual lack thereof. her eyes get wide. "ooooh, you're getting swelling? well... let's get you measured." we head right into the exam room, she measures little pen marks every 4cm from my hand to my shoulder, and she measures the circumference of my hand/wrist/arm at each mark, just as she did in late february to get the original baseline measurements. as it turns out, not just my hand, but on average my whole arm is at least 0.5cm larger than normal. the increase is enough for her to scrounge around in the cabinets to find a compression sleeve and glove for me to borrow and wear during the day. she shows me how to put them on (the process is slightly painful where the cording is), and how using a kitchen glove on the other hand provides juuust the right amount of friction to help get them into place. hopefully the swelling is just my body's response to radiation, but for now, physical therapy sessions will transition into lymphedema therapy sessions. i discuss my continual cording issues, and how i was showing andy the other day where the cords were. she mentions that because the radiation redness is now in my armpit area, i could no longer be pressing around in there to try and loosen the cords. "but whyyy?" "wellll... because the radiation." "fiiine." the rest of the appointment is spent helping me get my arm more stretched out (i couldn't fully extend my arm straight at the beginning of the appointment), and getting measurements for different brands of compression garments. so instead of having my usual chilling out on the couch monday evening, it is mostly spent researching and ordering a compression sleeve and gauntlet (like a glove, but without fingers). fun times in Cancer Land.

tuesday: radiation. cinco de mayo. fajitas!

being busy on wednesday is evidently the new tradition. radiation: check. panda express, scarfed down in my car, in a parking lot: check. pick up exemestane prescription and hydrocortisone: check. grocery errands: check. physical therapy: check. today is arm bike, pulley stretches, then into the exam room. compression garments off, then onto the table for some light lymphatic massage. excess lymph fluid is just under the skin, not very deep, so the pressure is very light. the lymph needs to be drained from my arm towards my trunk, so there were lots of repeated gentle strokes in different areas (neck, chest, back, belly, arm) and in a specific order, so as to clear the lymph vessels in other areas of the body, before encouraging the lymphatic fluid from my left arm to head on over that way. i am clearly not a therapist, but that's the general idea. i find it funny that i have a participatory role at one point, and what i have to do is... take deep breaths. guys, i am becoming an EXPERT at breathing during medical appointments. i am now on a schedule to meet with her every monday and wednesday, and i admit that i am, and actually have been for some time, quite thankful for the forced work from home situation we are in right now (though not thankful for the pandemic driving it). having to park (and pay) and re-park (and re-pay) in the work parking garage for all these appointments would have driven me into a rage by now.

thursday: radiation. also, my compression garments arrive in the mail:

on friday, i get to show off my new cyborg sleeve. honestly, i thought more people would have seen custom compression sleeves in the radiation oncology department? but apparently i am cutting edge. or they were feigning surprise. either way, i figure if i am going to have to wear one every day for awhile, it might as well be awesome. i find the gauntlet to be sort of fussy, and it kind of squishes my pinky finger, so i will likely order a glove and see if that fits better. it makes things a little tricky with typing, and with all the constant hand washing nowadays, but we will see.

today and yesterday has been a lot of puttering and doing little tasks. researching and ordering things online, clearing items off my laptop, laundry, replying to emails, etc. happy to stay inside with the beautiful-looking but quite cold weather. we ordered some chinese takeout on saturday and have been working on little projects and playing board games. Week 37 is over, and i am halfway done with radiation -- three more weeks to go with The Baconator. i am getting pretty red, so i'm interested to see how toasty i end up... not that i have much of a choice. let's do this.

Posted on Sunday, May 10, 2020 at 04:58PM by Registered Commentermdog in | CommentsPost a Comment

getting buzzed

Week 36 in Cancer Land = week 2 of radiation, in case you were keeping score. monday was back to radiation oncology, obviously, and also my weekly meeting with dr. d immediately afterwards. that part started off with me, still in my hospital gown, wrapped in a blanket, sitting in a chair, staring at myself in an ipad, which was propped up on an exam chair. eventually dr. d popped up on the screen and we did a little telehealth chatting. we discussed my current side effects (none), probable side effects (radiation sunburns), and anticipatory side effects (nausea, i ask? no, she doesn't expect me to have any. i have my doubts, but i also still have some as needed anti-nausea meds from chemo, so i'm not too worried). then, "ok, great! i'll come in and look at your skin and check it out." i am a little surprised, but i suppose it makes sense to avoid direct contact when you can, and have direct contact only when you need it. she examines me and shows me exactly where i can expect to see changes on my skin from radiation. she is happy with my progress, and i am on my way home.

later in the afternoon, i head back out for physical therapy. arm bike, pulley stretches, resistance band exercises, wall slides/crawls. then it's into the exam room for manual therapy. i've been having trouble extending my arm again, which feels like another cord forming to me, though my PT chalks it up to needing to stretch my bicep/forearm more. i suspect we are both right. no cords released, but my arm always feels better after our sessions. after my appointment, i head to aab india in grandview to "support the local economy" and pick up our order of indian food. truly, we are selfless, more than willing to bear this delicious burden.

tuesday: radiation. i have found that the n95 construction mask sort of presses against my neck during treatment, making me slightly gaggy and uncomfortable. i switch to a cute cloth mask that my mother-in-law has made, only to find that as of friday, they are only allowing n95 or surgical masks to be worn. sad trombone. the hospital bouncer hands me a new surgical mask and i head inside to the dressing room. i noticed the other day that another radiation patient was wearing a robe -- not like the breast health clinic comfy warm white spa robes, but surgical gown material -- and i thought, wait, i can wear one of the robes? in each of the two dressing rooms, there is a cabinet with three shelves: the top shelf has large patient gowns, the bottom shelf has small patient gowns, and the middle shelf has patient robes. the two main differences being that the robes have slightly longer sleeves (irrelevant to me) and they actually, successfully TIE SHUT IN THE FRONT (QUITE RELEVANT TO ME). i, of course, had been told during the dress rehearsal to put on a gown, and i, of course, followed the instructions to the letter. i guess the techs thought i enjoyed trying to keep my gown shut manually? i mean, i suppose they do have better things to worry about.

anyway, radiation days are at least slightly more comfortable now that i'm not worried about flashing anyone on my fifteen yard walk from the dressing room to the radiation area and back.

later that evening is cookie baking time. i had discovered a lonely bag of chocolate chips in the cabinet the week before, and figured quarantine was as good a time as any to destroy the kitchen with a giant mess. i dug out two things: a recipe sent to me in 2006(!) from kate (certain athens friends know what i am talking about), and a stand mixer (certain athens friends know what i am talking about). they did not turn out perfectly, but they did turn out pretty well. we've got cookies for days.

wednesday is another busy wednesday, but not so busy as last wednesday. radiation to mcdonalds to physical therapy, but no stops for computer peripherals or groceries this time. the PT adds more resistance band exercises to my arsenal, there is more manual therapy relief, but no cords released. i have also begun to start feeling slight pain in my hand, on the top, near where my thumb and index finger meet (soft tissue, not joints). it is unclear whether it is from cording or sore muscles or what. at any rate, i feel better as usual after PT, though the tightness and achiness come back later in the evening. sad face.

thursday, another familiar flashback: early morning numbing cream and press and seal. if you guessed a visit to dr. m, you've been paying attention! i get there early for lab work in the infusion room, and andy joins me for the office visit. today begins my monthly injections of zoladex. generally speaking, zoladex reduces the risk of my estrogen-hungry cancer from recurring by telling my pituitary gland to inform my ovaries to knock it off with the estrogen production. side effects include menopause (yes, check), hot flashes (yes, check, familiar already, thanks), and joint pain ("you might feel like an old lady when you get up after sitting for awhile"). dr. m tells me that zoladex is not a normal injection -- it is actually an implant/pellet that dissolves over the course of a month. weird. she also sends a prescription for exemestane, though i won't start that until after radiation is over. only a certain number of variables at a time, so we can figure out what side effects are coming from where! i'll be back in four weeks and eight weeks just for zoladex shots and port flushes, and then in twelve weeks for a zoladex shot, port flush, and office visit. i'll also have some sort of scan before then too, though i can't remember which one. she departs, saying she wishes she could give me a hug, but perhaps in twelve weeks, that will be possible. then it is back to the infusion room for my injection. the nurse explains the implant situation, which will be given with a syringe, and the numbing agent, which is more or less a freezing cold liquid sprayed onto a section of my lower belly to numb the area. she begins spraying and holy cow, it is seriously cold. i don't watch the injection, so i don't know how large the weird pellet syringe is, but i don't feel much at all, so i am totally fine with this method. i get a band-aid and head home; an hour later, i head back out for radiation. i am early and so are they, and i am in and out in well under half an hour.

friday: radiation. throughout the course of the week, i have been trying to figure out the sequence of The Baconator. there are a few days where there are x-rays, or additional imaging, which complicates my calculations, as i can't very well write anything down, or do much of anything aside from breathe while i'm on the table. i have at least figured out that i get seven treatment zaps every day; 0 degrees is me staring straight up at the ceiling:

1 - Baconator rotates about 5 degrees on my right: buzzzzz
2 - Baconator stays at about 5 degrees, parts inside the zapper click and move: buzzzzz
3 - Baconator rotates way to the left, under me, to about 170 degrees: buzzzzz
--- bolus is placed on my chest ---
4 - Baconator rotates back up and over, to about 45 degrees on my right: buzzzzz
5 - Baconator stays at 45 degrees, parts inside the zapper click and move: buzzzzz
6 - Baconator rotates back up and over to the left, under me, to about 135 degrees: buzzzzz
7 - Baconator stays at 135 degrees, parts inside the zapper click and move: buzzzzz

^ edited for accuracy

sometimes the bolus + last four are flip-flopped with the first three, but that is the general idea. some zaps only take a few seconds; others take about ten to fifteen seconds. a common denominator is that my arms start to ache and fall asleep by the fourth zap, and i am ready to get them moving.

by tuesday or wednesday, it was becoming quite clear where exactly i am catching those radiation rays. a big rectangle on my chest, running across from my left side, slightly past my armpit, to the middle of my chest; and from the bottom of my bra line to nearly the top of my armpit. there is also some on the back of my shoulder area, which i was told to expect, though i haven't quite figured out the physics of that. i apply aloe vera once a day; my skin is starting to feel a little tight, but not too bad. the radiation redness doesn't hurt at all (yet). as of this writing, i am one-third of the way through radiation, and no noticeable joint pain from the zoladex. still working on cords and stretching. it's been an enjoyable, relaxing weekend with lovely weather. bring it on, Week 37. let's do this.

Posted on Sunday, May 3, 2020 at 04:29PM by Registered Commentermdog in | CommentsPost a Comment

beam me up

so what i did not include in the last entry is that andy and i spent a good portion of last saturday setting up a little photoshoot. for some time, there had been discussions regarding how to celebrate our second anniversary with others in the middle of a pandemic. at some point, andy said, "we're gonna be two!" and a plan was hatched. it involved birthday cake.

monday is the first day of radiation. i get my temperature checked, i get gowned up, i get to confirm my identity (name, date of birth, yes that is a photo of me from two weeks ago with slightly less hair sprouts). then we head around the corner and into the radiation room. i lie down on the table, which of course has my immobilization cast, and a white sheet on top of it all. i get my head and arms seated, as they get the rest of my body positioned. on either side of me, they use the sheet under me to adjust my body ever so slightly into exactly the right place. it is all much the same as the friday dress rehearsal. there are several images of some sort being taken ("take a breath and hold" ... brief buzzing noise ... "you can breathe") as The Baconator moves around, guided from the other room by one of the technicians. the other technician is in the room with me, reading off numbers and making adjustments. after about five minutes? ten? the tech in the room says, "okay, treatment is about to start." i am left alone with The Baconator. i have been told that the actual radiation treatment is completely painless, and you can't feel anything. but you always think, really? come on. there's gotta be SOMETHING, right? but, no. not a thing. it might as well have been the dry run, except for the extra buzzing noises and warning lights occasionally declaring BEAM ON. the "take a breath and hold" plus buzzing noise plus "you can breathe" prompts happen each time The Baconator zaps me with radiation. if it wasn't for that, i could almost take a nap the entire time. at some point during treatment (while the warning lights are off), one of the techs places a thick, flexible, heavy, elastic-y plastic-y thing across my left chest and side. it has a translucent, yellowed color, which makes me feel like it is from the 70's, which is weird. it is called a bolus, and it has been in some sort of warmer, which is almost uncomfortably hot at first, but turns out to be fine. the bolus reduces the depth that the radiation beams actually go into my body; it is often used with post-mastectomy radiation patients. the bolus stays on for some of the treatments, but not all of them. eventually i hear one of the techs say, "bright lights," the overhead lights come on, treatment is done, and i head home.

but wait! monday is not over. later in the afternoon, i head back out into the world for physical therapy. arm bike, shoulder pulley, this time we add some stretchy resistance band exercises. then into the exam room to work on my cording. no swearing this time; there are definitely still cords to work on, though not quite as bad as last time. we are chatting as she manipulates my arm, and i am noticing lots of stretching and prodding but am not totally paying attention. she finishes and says, "well, go ahead and stretch your arm over your head." i raise my eyebrow at this request, which has been an impossibility for well over six weeks now. and i raise my left arm over my head. YOU ARE MAGIC, i whisper-shout. i look forward to our next magic session on wednesday.

on tuesday, it is back to radiation. as you might expect, it is not much different than the day before.

wednesday is.. a little busy. that morning, i decide to order a second monitor for my work from home situation (i have been using my old laptop as a second monitor using some software, but it was getting a bit glitchy). i fully expect to pick it up on thursday, but as it turns out, it is almost immediately available. so my day becomes: radiation at riverside; monitor pickup at micro center; scarfing down a mcdonalds cheeseburger and fries in the parking lot before my next appointment; physical therapy; next door to giant eagle to pick up a few grocery items.

thursday and friday are, of course, more radiation. i realize that i have five more weeks of these, so i decide to try and pay attention to the order of the imaging and the positions of The Baconator and the timing of the bolus and exactly how many times i am getting treated and from what direction. i mean, i've got nothing else to do. however, on both of these days, i am unexpectedly required to do extra thinking, distracting me from my mission. on thursday, the tech more often than not asks me to let a little air out during the breathing portion of the treatment festivities; and on friday, the tech more often than not asks me to take in a little MORE breath. the former is fine, but the latter is almost impossible. somehow i manage to do it. i ask one of the techs about it afterwards, and she says that it happens sometimes; i was probably just positioned in the cast a little far up or down each day. also on friday, the bolus wasn't warmed up enough at first, so they applied it during the last treatments, so everything was out of order anyway. one of these days i will be able to account for each Baconator treatment zap. it's either that, or stare at the drop ceiling, or think about what is actually happening.

saturday was a lazy morning, then the afternoon turned into a flurry of Getting Things Done. it was a lovely day, so yardwork happened, and then we ended up sweeping and vaccuuming and swiffering almost the whole house. i've been doing a lot of PT stretches and exercises on the floor, so the dust bunnies have been at eye level lately, driving me batty. CLEAN ALL THE THINGS!

so week 35 was both eventful and uneventful. no radiation side effects yet, i am told i shouldn't be expecting those until next week. i'm armed with bottles of aloe vera, and hoping that's all i will need. we'll find out. let's do this.

Posted on Sunday, April 26, 2020 at 06:23PM by Registered Commentermdog in | CommentsPost a Comment
Page | 1 | 2 | 3 | 4 | 5 | Next 10 Entries