Monthly Archives: November 2013
I meant to write about my practice films appointment, and then I got lazy last Friday, so here’s the best I can capture from that day and everything I felt and thought…plus some stuff about Monday’s first real radiation appointment, which was sort of a non-event, from an anxiety standpoint. It was over before I could get myself good and worked up about it, like I can during an MRI.
Back in February, when we first started talking about this hoe-down called cancer treatment, I envisioned radiation as looking something like getting x-rays at the dentist. They point the tube at you, and fire away at the target for the prescribed amount of time, and boom! You’re done. And for some reason, I envisioned the radiation therapist sitting on a stool right next to me, tapping their feet, humming a little tune, while they were shooting radiation beams at my chest. The dental assistant doesn’t sit in the room when I’m getting my teeth x-rayed, so I don’t know why I pictured the radiation therapist doing so. But back then, radiation seemed a very long way off, and I was intensely focused on the surgery, and champing at the bit to get this thing OUT of me.
Now the tumor is out, and I’m finished with chemo, and radiation is the final scouring of the area where the tumor was residing, and possibly littering the surrounding neighborhood tissue. Reality takes the stage, as we saw after the “simulation” appointment. Big white machines scare the blasé right out of me, and that simulator was about as big as they come, except for the breast MRI we experienced last winter. Serious $hit! So going off of my reaction at the simulator, I premedicated with Xanax for the practice films. No sweat.
I get two therapists and a nurse at the practice appointment, and one of the therapists is apparently that uncle/brother/friend in his personal life. Question: why does it seem like all men who work in nuclear medicine are hilarious? It’s a gift they have, and it makes them extremely valuable, and excellent at their job, and I love them for it. More on this later…
The machine they use for “practice” is a LOT smaller than the simulator. It’s even smaller than the MUGA scanner, which doesn’t wrap all around you, it just passes over the part of you that needs scanning. So the radiation machine, comparing it for size to the simulator and every other big, white machine I’ve been on, is nothin’ on the scare meter. It’s a lounge chair, with a small tanning panel that rotates around it while you lay there (basically) comfortably in your cradle thing. In my case, I also had to hold onto the bar just above my head, as if I was really concerned with getting my armpits tanned.
Once I’m lying on the table, we go down our check list. Name, spell it, date of birth, what are we focusing our radiation film on, are we posting the pics to my FB page, or theirs, etc. I answer back with the facts, and the smart ass remark that we are obviously here to radiate the spot where my right boob USED to be, and we all laugh over that, har, har, har…
They get me situated in the cradle, then they start trying to short sheet the scanning table, with me on it. That’s how they get you turned just so – you lie still, they manipulate the angle of your body using the sheet under you. Once they’ve got that sorted out, they push you around some more, telling you lift your chin, turn this way, asking the nurse to hand them a pudgette (presumably to get your pudgette out of the way). I start snickering at this point, like I did when I was 5-years old, and I thought the word “butt” was the funniest thing ever. “Did you hear that! She said pudgette! Pudge-ette! Get it? Ha, ha, ha, ha….”
Then they turn on the lasers (Whoa, there’s a laser show!) which casts a red cross hairs on your torso, with units of whatever measure marked in lights running up the middle. Once they have that stuff aligned, they get out the markers and draw some more stuff on your chest, your rib cage, your belly (I wasn’t sure, but I could have sworn they drew a smiley face around my belly button), and all across your clavicle. Then they turn the tanning panel on, and it has a big mirror in the center, so I can get a good look at their work (Damn! No smiley face).
They all go out, run the practice, the thing goes spinny around, and I see this other panel come up with all these little squares on it, looking sort of like the solar panels on the Space Station. Cool!!
They all come in, readjust my shit, then go out again. We run another practice, all the while playing old school R&B/dance music in the treatment room, so I’m jamming out (and high on anti anxiety meds). Then they come back in and readjust everything, and give me another freckle. Smart a$$ guy asks the nurse “did she get the tiger, or the dragon?” I raise an eyebrow. “Tiger? Dude, it had better be a dragon!” Mr. Smart A$$ chuckles at this, and says “You’re sort of unflappable, aren’t you?” I laugh. I remember he’s a smart ass because it keeps chicks like me distracted from the scary $hit he does every day to keep us alive. “Unflappable?” I say, playing along. “Heck yeah I’m unflappable. I’m on anti anxiety meds, which is practically like having a cocktail, and you guys are playing old school R&B, so I kind of feel like I’m at the club in the old days.”
One more last set of practice films, and we’re complete.
Once I’m dressed again, I return to the waiting room to hang out with Ken, who the nice woman at the reception desk refers to as my “bodyguard”. The radiation nurse collects us both, and we go into one of the exam rooms where she gives me the low-down on what to expect from radiation as regards skin damage, and how to manage that. My options are prescription gel, 100% pure aloe (same stuff I’ve been using as after shave gel for years) and a naturopathic calendula cream that my radiation oncologist raves about. They recommend you use either the prescription gel or the aloe in conjunction with the calendula cream, and I opt for both gels. Can’t hurt to go a little overboard on the gels and creams, and I can’t stand dry skin in any case, so this is one prescribed care regimen I can follow to the letter without even trying.
For the next six weeks, I’m also not to shave, use standard deodorant, or wear an underwire bra. The deodorant is not a big deal, as I usually forget to put it on anyway, thinking I’ll shave my underarms with the electric razor after my shower. Then I get caught up in Perry Mason, and I forget to shave as well until the next day, when it starts all over again. And the bra thing? I have a couple of “shaping” type camis which I think will give me some support of my lone boob, so I figure that’s no problem, either.
On Monday I put all this crap to the test, because Monday was the first day of my radiation schedule.
I forgot to take any anti anxiety meds, but as I mentioned above, that proved to be a non-issue, as the session was over before I had a chance to work myself up into a lather about how scary this all was, and why I was there. If I’m not left alone for a good 10 minutes, I can’t get solidly freaked out, and I was never alone for more than 45 seconds or so. They’d fuss over me, go out, zap me, come back, fuss over me some more, go out, and zap me again. Honestly, it took them longer to align the target than to zap it. So there’s that.
When they finished with me, I was escorted back to my changing room, found my tube of aloe, and did my best to slather it on everywhere they hit me with the uber tanning beams. My range of movement is pretty good (impressed the heck out of my radiation oncologist at the simulation), but I still can’t comfortably reach around my back, which makes it difficult to coat the whole area effectively, and they won’t let Ken back in the radiation area. So it’s kind of just slap it on, and get the hell out of there, trying not to get discouraged about the thought that I have to do this all again tomorrow. Then it was on to the port lab for a port flush – also, not a big deal, though I did get the big dude who looks like he enjoys sticking people with needles, because he knows it hurts. He’s not a bad guy, but he LOVES his job.
However, it wasn’t totally traumatic, and I managed to get it together enough to go up to the pharmacy and collect my radia gel, and get the spiel from the pharmacist on how to use it, and how often. Twice or three times a day, and don’t wash your skin between applications, but just put the second coat over the first, and the third over the second. Well, of course. Who would wash off something that’s already evaporated? Sheesh.
I find I am hating the shaping cami, as the ribbing that holds the flesh makes my skin itch where I didn’t receive any radiation, so you can imagine how irritating it’s going to feel on the radiated skin. Gah! Back to the drawing board. Or at least back to my surgical bra. I knew I was keeping that thing around for a reason…
Upcoming doctor’s visits:
Tomorrow, Thursday, we meet with the surgeon who did my mastectomy in March, for the 6-month follow up.
Friday we meet with the radiation team for what they call “practice films”, when I will also meet with the nurse to talk about questions and process, and I assume I get all my prescriptions for the skin care creams.
Then Monday, November 18, we start radiation treatments for real.
Tomorrow will be 5 weeks since my last infusion.
During my 8-week course of the dose-dense A/C, I gained an additional 14 pounds, on top of my already 50 pounds of excess baggage. That was in spite of feeling so much like crap that I rarely ate. After two weeks off from chemo, I noticed I was losing almost a pound of weight per day, so that by the time I started the weekly paclitaxel infusions, I was back to my starting weight.
Then the scale crept up, up, up, again, until I was an additional 27 pounds. I didn’t worry much about it. I thought it would start peeling off again when I was through with the paclitaxel. I couldn’t wear my wedding ring, and I can’t wear most of my clothes, but hey! It’s temporary, right? Hmm. A two week break from paclitaxel, and no downward movement on the scale. I don’t think I can blame all this weight gain on the steroid any more, and I said as much to my chemo nurse when I went back on the paclitaxel.
However, today, despite not having changed a thing, my weight is down. Not by a lot, but it is definitely trending downward. Despite Halloween candy, eating WAY too many of the cranberry bliss cookies I made last week, and my love affair with cream cheese, the scale is moving ever so slowly (I’ll take it!) downward.
I’m still fat, I still can’t wear my wedding ring, and most of my clothes still do not fit – but we’re making progress, and it’s progress that I can see. At last.
Just a note:
I saw my new doctor. Don’t like him as well as my old.. but his does offer options and I am sure is a good doctor.. just very terse and business like.
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Got an EKG.. need to get blood work-up to watch for other problems.. BUT everything looks fine.
I was having palpitations.. something I have had off and on over the last 8 years.. but pretty frequent over the previous few days.
We talked about options… ended up with a basic prescription for Valium for 30 pills. So far I have taken two, once each of the first evenings. That seems to have done the job.. got me down to a better baseline and everything seems better.
At some point the day of the radiation planning.. Something in my brain shifted.
I have in general been really good a dealing with crisis and stress. I have even had praise from managers of my ability to think on my feet and stay calm. Well last Monday after we got back from the planning session, I had a crash. I have had these before.. typically a few hours when a section of the process has ended and things feel more normal. Then I would blow out the pressure and just sit.. feeling like my skin was tight and general unease.. Then I would get better and move on.
Last Monday it lasted all day. I could not bring myself to return the computer for work.. I just sat and stared at the TV.. not multi-tasking etc.. Just trying to get lost for a bit.
Tuesday was better but I could still feel the edge..
Sunday… at the end of the Seahawks game there was some good ol’ game tension as they tried to come back from being 21 points down and win in overtime. Which they did. Problem was, I was still wired for about 2-3 hours after that..
Now Monday.. going back to work which seems to be pretty well in hand.. I am really wired.. my skin crawls and I am having a hard time staying focused..
It is my assessment… that I have developed some kind of PTSD reaction to normal stress and it just puts me in overdrive, like a dimmer switch has become an on/off switch with no in between.
I maybe FAT, and need to lose weight.. but have been pretty lucky health wise.. with low cholesterol and blood pressure that stays at the high end of normal. This week the BP is also up.
I am looking at things I know that help me.. keeping my hydration up and getting back on the treadmill for half-hour or longer walks will help some. But this time I know I am out of my norm and can feel it chewing on me… So I am getting help..
It will be fine.. but knowing one’s limits is key to surviving a year + of intense care for someone you love… I am hitting some kind of limit. So off to the Doctor I go…
It hasn’t seemed like it, but every day I am getting a little bit stronger. The progress has been very slow, in my opinion. Apparently, my expectation was I’d start to feel better pretty much immediately after my final infusion. I was willing to compromise at a week to 10 days out. Of course that hasn’t been the case. Friday I started to think “what if I never get any better?”
The insurance company has been bugging me to submit some forms to apply for social security disability, and I’ve been a real stubborn bitch about not sending it in. Finally did, thinking “This is completely stupid, social security means permanently disabled, which I am not. I just need a few more weeks to get through radiation.” But Friday in the shower, I started thinking “The lady from the insurance company is right to ask for that stuff. I’m not getting any better, and in some cases, I’m worse. Nails hurt worse than ever, the nail on my left thumb is definitely jacked, and I’m probably going to lose the nails on both big toes. My feet and ankles are throbbing right now, and I shuffle around the house like an old woman by the end of the day, even if I’ve been sitting on my ass the whole time. I’m so tired, I want to cry.”
What if this is it? The painful feet, the fatigue after doing simple things, like taking out the trash AND doing one load of laundry, when I think for 5 whole minutes “Oh, yeah! It’s all coming together now!” And then my fatigue sneaks up on me from behind, taps me on the shoulder, and says “Wait a minute, stupid. Wham!” I hit the wall so hard, it takes my breath away, and I flop into a chair, panting and frustrated, because I see 10 more things that need to be picked up/put away/washed/thrown out.
So I whimper, grind my teeth, and say a curse word or two, or vent at Ken through my tears. Then I give up for the day, and find an old episode of Perry Mason or Bones, and veg out in front of the television until the kid comes home.
But a couple of days of that, and I’m right back up, running smack into the wall again. Over, and over, and over. But here’s what I finally noticed today. I run into that wall, true, and it hurts. But every time I run into that wall, I move it a little farther, and farther out. I did three loads of dishes yesterday, and cooked dinner last night, and I wasn’t completely out of my mind in pain, or exhaustion. Woke up today (despite the continuing insomnia) and my feet weren’t completely on fire. I’ve done two loads of laundry, one load of dishes, and I’m still standing. I’m thinking, maybe I’ve turned a corner. Maybe I’ve finally broken down that wall. Then I get in the shower, and there go my feet, there go my nails again. And there goes the all over body ache. Shit. All I’m doing is standing in the shower, and BAM! There’s that f-ing wall again.
But also notice I’m still standing. I might need a nap in a minute, but right now, I’m still standing.