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.
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.
I was so nervous about my first chemotherapy appointment, I took an antianxiety pill before I went. I took another (four hours later) right before we started my first infusion. I soon found that the infusion was no big deal, it didn’t hurt, and I didn’t feel nauseated, at least not right away. I was so happy and elated about this fact, that I went out with my husband to our local pub, had a beer, and a big meal, complete with bread pudding. Major nausea four hours later, so I never did that again, and as long as I stayed ahead of the nausea, there wasn’t much in the way of big, scary drama.
I did chemotherapy for so long that it became routine, just something I had to do, like going to a job. I had no fears about it, and in some ways actually sort of looked forward to it. Leave aside the blood draws, the premedication, and the side effects. What did I do for 2+ hours every other Thursday through A/C, and every Thursday through paclitaxel? I got lunch and coffee, bought a fashion magazine and a box of Dilettante Truffle Cremes, then went to the 5th Floor to watch cooking shows, knit obsessively and nap. How awful does that sound? Yes, I usually felt like crap a few hours later, and for days after that, but while the infusion was being administered? It was mostly relaxing. I reclined in bed, and people brought me warm blankies and cookies. I know that’s not how it is for other cancer patients, but that’s how it was for me.
But today, I went for the radiation simulation appointment. Let me tell you, while I was doing my chemotherapy, I kind of put it out of my mind why I was doing it. I just had to do it. But today they had to get my radiation cradle made, which was sort of cool. They mold it to out of polyfoam, so I felt like I was a model for Face Off. But most of the time I was lying on a CT scanning table, looking at the outer rim of a GE Lightspeed scanner. Lying there, that’s when it hit me – You Have Cancer. This is officially Big Shit happening in your life.
I’m back to feeling a little more complacent – I’m being treated for Stage 3 breast cancer at Seattle Cancer Care Alliance, the best place in the nation, maybe the world, for late stage cancers. I’m in GREAT hands. But there is more definitely a higher level of stress in our house. For me, the trigger is the big white CT scanner. For Ken, it may be the same thing. When we were driving away after leaving the facility, he exhaled in this big, slow puff of air. It’s a sound he ONLY makes when he’s under high emotional stress. Like he’s trying to keep it together while I’m going through my shit. Which he is. People think this is hardest on the cancer patient, but I think it’s hardest on the care giver. Especially someone like Ken. Most of my catastrophes and heart breaks, he can DO something about, he can blow the demons away. For example, when I was packing my apartment to move in with him, I was overwhelmed and crying most nights. Overwhelmed to the point of being immobile. One tear filled phone call to him, and he was over shifting boxes and hauling trash away until I had one clean, organized corner on one side of the apartment. He said “Whenever you feel overwhelmed, just take a breath, and look over there. That’s your corner of calm in the middle of the chaos. You can look at that, and know that you are going to get through this, and that I am going to help you. We can do this. It will be okay.” And it worked. It was still a scramble, and at the end I was throwing shit randomly into boxes to sort out later (I think those are still in the storage unit, taped shut), but it turned out okay. I was passed out in bed with the cat at the new house by 8pm, while he was making a store run getting hot cocoa and chocolate for me, but we made it.
But cancer? This is one thing he can’t chase away from me by sheer determination and muscle. And that is hard on him. And he hates it.
But he comes to ALL the appointments, even to the boob doctors and the gyno-oncologists, when most men don’t dare to venture. He holds my hand (or my foot, as was the case in the Symphony scanner at Virginia Mason) when I am terrified. He makes jokes (sometimes) when the doctors are shoving needles into my fibroids to take samples. He rubs my tummy when I’m crying out from the pain of an endometrial biopsy, because I can’t do it myself. And today, he waited patiently in the hall, making small talk with Randall, our goat raising, master gardening half of today’s simulation crew, while I was changing into my gown in preparation for the simulation. I have to say, Randall is fascinating, and extremely entertaining. If you need good advice on growing pumpkins, or how to build a bed for morels, Randall’s your guy. He also knows what he’s doing when it comes to keeping you calm while you wait for the doctor, and how to help you to sit up from the scanning table, which is NOT easy. I’ve been on a lot of scanning tables, and I’m here to tell you, Randall knows his shit.
The doctors arrived, rearranged my position, and then they started tagging my with stickers. I have a lot of flesh to manipulate, and at one point the doctor was asking for something to hold my well padded shoulder tissue out of range of the scanner. I’m not sure, but I think the item they use to hold your fat out of the way is called a “pudgette”. This struck me as appropriate and extremely funny, so I started to snicker a little bit over that, though I tried to stifle it, because a) this is serious shit, and b) I wasn’t supposed to move while the mold was hardening around me.
One test scan, some more readjustment, and then the final initial scan. Then it was time for the tattoos.
They tattoo you so they aim the radiation beams at the exact same spots every time. It hurts like a tattoo, but just for a second or two each time. I’d like to say I’m covered in little daisies or four leaf clovers, but it’s just a lot of tiny lines no one would really notice.
My radiation oncologist has to leave for that part. I think it breaks her heart to see her patients cry out in pain, and knowing that she has ordered it done to them. Some people find the tattoo process very painful, even if they already have tattoos of their own choosing. But I had Randall and Alisha with me, my two techs, and it was over pretty quickly. Then they had to photograph my tattoos, with Randall making jokes about the photographs going on Alisha’s Facebook page, so I pretty much forgot everything about being scared, and started thinking about how I would soon be going home, where I could research how to build a bed for morel mushrooms.
We are about 24 hours post final paclitaxel infusion. Final infusion was a lot better than the week before. Last week I left absolutely drained. I’ve never felt that poorly afterwards, not since the dose dense A/C cycle. Maybe the premeds didn’t have enough time to take effect, but I felt like I had always expected a cancer patient to feel. So worn out, I was ready to cry. I couldn’t even look at people, I just followed Ken to the elevator, to the car. Once in the car, I was very upset. My hands tingled so much (I think I wrote about this last week) I was frightened, sure I was having some kind of horrible reaction. So I was worried going into this last one. Granted, I felt kind of loopy from the Benedryl, but not so completely worn out as the last time.
Later that evening, watching Halloween Chopped with the husband and child, I was so tired I could barely keep my eyes open, and so uncomfortable, I shifted in my seat and moaned and whined for 45 minutes or so. Ugh. By the time Ken shut off the television at midnight (the kid was already tucked in for the night), though I was ready to go to bed, I was WAY too restless to sleep. Ken was in his office, checking for work email and putting on his computer, so I got up and went back to the family room to read. I’ve been obsessively reading Phillippa Gregory historical novels, so time passes more quickly than I realize, and soon it was after 3am. Still I was not sleepy, and kept reading. Finally, I got sleepy and went to bed after 4am. At 6:30am or so, the kid woke me up. And for once, I was not bitchy and ”hung over” from lack of sleep.
So here I am on 2 and one half hours of sleep, and relatively speaking, I feel pretty great. Granted I’m not super active, I have only done one load of laundry, one load of dishes, and finally folded the towels that have been sitting on the couch for the last three days. I was in my pajamas until after 2pm, and am still wearing warm-up pants, rather than jeans, so while I’m clean (I showered), I’m still basically wearing pajamas. I hope I can get my jeans washed and dried before we have to leave for the craft store. I have only two pairs that fit me right now. Did I mention that I was 40 pounds overweight before I started this process, and I’ve gained another 27 since I started the paclitaxel. And no, I can’t blame this all on the steroid, though it isn’t helping. Ugh.
So why do I feel so good on 2.5 hours sleep, when on 4-5 I’m usually groggy and pooped out? Maybe it’s the fact that we’ve eaten a proper dinner the last two nights, complete with lean protein and a vegetable. Holy crap, how’d I pull that off two days in a row? Never mind, I won’t ask questions, I’ll just go with it…
Maybe it was the hazelnut syrup my husband brought home for me last night, and cleaning the espresso machine, so I could make my favorite Friday morning treat, a hazelnut latte (Thanks honey! XOXO).
Or maybe I’m still buzzing off that half box of Dilettante Café Creams truffles I ate last night (oof, now you know why I have gained 27 pounds!). Maybe I’ll crash by 6pm tonight – who knows! I’ll take a good day, and not spend too much time wondering why, and how to recreate it. Because one thing I’ve learned, whatever my status is at any given moment – feeling good, feeling like crap, bone tired – things are bound to change, and probably soon.
Now I think about it, my eyes are starting to feel a little heavy. Time for cup of tea, or possibly another mocha truffle…
Just back home after completing infusion number 11. Riding down in the elevator at SCCA, for the first time in a long time, I FELT like a cancer patient. So drained, and my hands tingling like they were shot full of the anesthesia they give you at the dentist…
And for the first time EVER, I had a moment when I wanted to call my doctor and tell her I don’t want to do the final infusion. My hands were so numb, it scared me. I kept thinking how I wanted to take a nap, but I was afraid to go to sleep, as I might be having an allergic reaction. Up to this point, I’ve been taking the paclitaxel like a champ. But the side effects are cumulative, so perhaps an allergic reaction could still happen, even though I’ve had no issues on that so far. Driving home with Ken I was having visions of ending up in the emergency room this time, and was considering calling the oncologist to tell her “I can’t do this again.”
Thankfully, the feeling has passed, and my hands and feet feel as they normally do during this process. Tingling and numb, but well controlled while I am taking the L-glutamine. And in no way frightening. Just annoying.
But I’ll let her know what happened, and how long the effects lasted, and let her do what she does best. Because she is awesome.
So my hair is growing, which is good.
However, a couple of weeks ago I got a bee in my bonnet to wear eye makeup, and found out just how much you NEED eyelashes, just to keep the powdered shadow out of your eyes. Most frustrating, as I had about 3-5 lashes total on each upper eyelid. Yikes! And don’t even get me started on how difficult it is to line up false eyelashes without the marker of your real eyelashes to guide you, or on how to know where to stop with the highlighting shade, when you have no eyebrows. Freak show potential here!
Now, fast forward to today. My upper eyelids, and I hope I’m not jinxing myself here, have a profusion of tiny, short lashes growing out and filling space. Whoo, hoo! Oh my gosh, I hope my whoo, hoos are not spoken too soon…
My eyebrows are a maybe, at least on the left. Short dark hairs seem to be growing in. Not so much on the right. Did I tell you I got fed up with them and shaved the rest off?
Two more infusions to go, so I may yet lose all ground I have gained here in the last couple of weeks. Sucker…
Feet feel a LOT better today. Nail beds of the fingers still a little touchy, makes it not fun to type this.
Toe nail beds feeling better. Still don’t want to clean my house, though.
Taking another week off from Taxol.
Nail beds in my fingers and toes still tender. Feet are still numb, and sometimes hurt.
Next week I have an appointment with the doctor anyway, so we’ll reassess, but I assume I will be back in the taxol saddle again that day.
Ugh, that will be a loooonnnngggg day for more reasons than one.