Radiation Week 3: Eating and Drinking Issues

Rounding into the third week of radiation, and the tumor is definitely shrinking. My bite is no longer misaligned, and the pressure is gone. Hurray!

Alas, with the good comes the bad. Fatigue, check. Dry mouth, check. Loss of taste, check–even moreso than last week. I’ve still got a little bit of sweet left, but far less, and salty and savory remain gone. And now I’ve also got raw patches on my tongue and inside my mouth to go with the sore throat, so I’m avoiding anything sour, tart, or acidic. I’m using an anesthetic rinse and gargling with a baking soda solution every other hour, but these only marginally ease the discomfort. Eating has become quite painful.

I’m trying to be conscientious about eating and drinking, but the combination of no taste and pain makes the intake of nutrition an unpleasant chore with no joy to it whatsoever. My last vitals check last week shows I’ve lost a little weight. Not much, nothing to be alarmed about, but a trend I need to make sure I don’t continue. I’ve been switching over, once again, to soft foods and protein shakes, even researched a new food substitute, Soylent, but it’s very new, still being sampled by healthy people, and I’m disinclined to be the first cancer patient trial.

And an odd thing I’ve started doing, as experiencing food becomes less enjoyable and more of a distressing duty, I’ve switched to seeking out other ways to positively experience it. I spent hours on CandyBlog, looking at the pictures of delicious candy and reading the reviews, read this lengthy article on one person’s scientific search for the very best chocolate chip cookie recipe, and spent an afternoon browsing pretty food pictures on Pinterest.

We’re halfway through. Another two and a half weeks of radiation to go. These are going to be long weeks.

Tweets for the Week of 06-16-2014

BCBS Appeals Process and Radiation Side Effects

Talked with my radiation oncologist, and he’s going to bat for me regarding Blue Cross Blue Shield’s denial of coverage. He’s already gone through the peer-to-peer appeal/review process with the BCBS physician, and the BCBS physician is in complete agreement with my radiation oncologist–that this course of radiation treatment for me is medically necessary. But apparently, the BCBS peer review physician doesn’t have the power to overturn BCBS’s denial of coverage. Which really does make one wonder, what exactly is the point of having a peer-to-peer review process?

Next step is assemblage of documentation and a firmly worded letter to BCBS. My doctor has seen this before from BCBS, knows the paperwork and red tape hoops to hurdle, and is confident we’ll get the denial overturned, although it may take a while.

I’m glad someone knows their way around BCBS’s labyrinthine procedures. As I’ve mentioned elsewhere, for my day job, I edit legislation for the state, so I’m comfy parsing obfuscative and convoluted legalese. I’m not daunted by insurance forms and small print. But trying to get this sorted has thus far been an exercise in frustration.

And I’m not at my keenest or most patient these days. I was hoping the radiation’s side effects wouldn’t kick in for another week, but they seem to be in full swing already. I’m exhausted all the time. I wanted to get out this weekend to run some errands but spent it sleeping or somnolent on the couch instead. And I’m having a hard time concentrating and remembering things. I keep starting to do something and then forgetting what it was halfway through. I have a vague sense of being very behind on a lot of outstanding to-do items with a decided overlay of “overwhelmed” blanketing it all, but I can’t seem to focus on anything to the point of getting started.

Also, my throat is quite sore, my mouth perpetually dry, and I’ve all but completely lost my sense of taste. I’ve got a little bit of sweet left, but salt and savory are utterly gone. Sour is an odd amalgam of blunted caustic aftertaste and dim metal-chemical, oh, but I can still taste bitter. Yeah, the joy of eating, not so much.

I’m trying very hard to deflect my focus away from the underlying fear of “what if it’s permanent?” With chemo, I knew that nearly everything I was going through–the sickness and pain and nausea–was transitory, albeit there are some long-term side effects, like the onset of early menopause, that I’m still coming to grips with. With radiation, there’s a chance that I might not get back what I’m losing. What if my sense of taste is permanently wiped out? What if my cognitive impairment doesn’t get better? Trying not to dwell on it because I don’t have much of a choice. Gotta do the radiation to kill the tumor.

On an up note, while I can still feel the swelling where the tumor is, it doesn’t appear to be winning the race any more. My radiation oncologist said I most likely wouldn’t see the radiation’s shrinking effects on the tumor until the second or third week of treatment. We’re just at the 1.5-week mark today, and while the tumor is most definitely not shrinking, it has either slowed to the point of my not being able to detect its daily progress or stopped growing altogether. The pressure is still there, right on the verge of pain–I’ve had to take painkillers a couple times now to mitigate it–and the swelling has screwed up my bite alignment again. But at this many days out from the end of my first course of chemo in April, I was in constant pain and having to hit my prescription narcotics pretty hard to keep functioning.

Small steps. Moving forward.

Tweets for the Week of 06-09-2014

First Week of Radiation: No Superpowers, No Insurance Coverage, and Tumor Coming Back

So we’re nearly at the one-week mark of starting radiation treatments and I have yet to see any superpowers. Dangit.

We also got a letter from our insurance company, Blue Cross Blue Shield, informing us that they are denying coverage for my radiation treatments because it “does not meet the criteria of ‘medical necessity.’”

I have cancer. The tumor being irradiated is aggressive, as in incredibly fast growing. Where, exactly, is the dearth of “medical necessity”??

Obviously, we’re appealing.

And on the aggressive and fast-growing front, I can feel the tumor beginning to come back from where the chemo knocked it down. Right now, it’s just an uncomfortable pressure in my palate and against my last upper-right molar, but I remember this feeling. It will become blindingly painful in a matter of days unless the radiation overtakes it and starts pummeling it back again.

The radiation is slowing it. I don’t need painkillers yet, at least. In April, at this many days out after I finished with my R-CHOP chemo regimen, I was already taking daily painkillers and starting to ramp up the doses. And it was a week later that I went into the hospital for the first round of R-ICE chemo, needing dilaudid to manage the agony.

It’s a race to see if the radiation can hammer it back faster than the tumor can grow to a debilitating size. There’s no way we can stop in order to argue with Blue Cross Blue Shield about whether my radiation treatments are a “medical necessity.”

I have much fury, distress, and outrage.

Tweets for the Week of 06-02-2014

  • First day back taking MARTA to work and of course, train broke. Have to take a bus from Medical Center to Lindburgh station. Gah! 08:03:18, 2014-06-03
  • Aaand now we're being sent back to the train platform…#damnyouMARTA 08:10:45, 2014-06-03
  • Finally safe and sound at work after bit of MARTA aggravation. Were I one to believe in omens and portents, this would count as a BAD one. 08:55:30, 2014-06-03
  • [Blog] Radiation Mask Fitting; Treatments to Start This Week http://t.co/aMiF3cFgum 17:30:30, 2014-06-03
  • At Winship for 1st radiation treatment. They have a nice vivarium in radiology waiting room with turtles and cichlids. :) #CopingWithCancer 12:21:19, 2014-06-05
  • Insurance company doesn't want to cover my radiation treatment. This is exactly sort of stress, aggravation, & worry we *don't* need. (>.<) 20:27:55, 2014-06-06

Radiation Mask Fitting; Treatments to Start This Week

Had my mask fitting last week for my radiation treatments. (The mask is to keep my head in place during therapy, as positioning and placement, down to the millimeter, is crucial.) Essentially, they laid me out out on this very hard, very uncomfortable platform inside a big, white metal doughnut/CT scanner, injected me with contrast, draped a hot and dripping mask template over my head and neck, and strapped me down so I couldn’t move while the mask hardened to the contours of my face and the CT machine slid me into its maw. Oh, and somewhere in there, they pasted stickers on my torso and drew on me with a black marker (boring medical stickers; nothing fun like Happy Bunny or Hello Kitty).

Were I at all claustrophobic, I would’ve been traumatized.

As it was, it was just uncomfortable, kinda disconcerting, and vaguely comical. They showed me the mask when they were done, and I reflected that I have a very small nose. And they also told me I get to keep the mask at the end of my radiation treatments, whereupon I tried to think of something to do with it. Decorate it with glitter and magic markers? Impale it on a pole and stick it in the yard to deter door-to-door salesmen and Jehovah’s witnesses? Use it as an avant-garde candy bowl for guests? I think it’s too large to serve as a good bookend. Maybe an emergency colander…which brings up the question of what, exactly, constitutes a colander emergency?

They were going to schedule my first radiation treatment for next Monday, but after talking to the doctor and expressing concern about waiting even a few extra days to start hammering back this incredibly aggressive tumor, he agreed that we should start sooner. So my first treatment is Thursday, and I’ll have daily treatments after that, excepting weekends and holidays. For how long? We still don’t know. Thought we’d get a concrete action plan after the results of my last PET scan came in, but it seems an eternal state of scheduling limbo is just how cancer treatments roll.

I am glad we’re starting this week. Knowing there’s still active cancer cells waiting to make my life hell again is just fermenting hypochondriac anxiety. Every twinge in my sinuses or head, and I wonder, “Is that the tumor?” And I’ve had several twinges already. But I honestly don’t know if it’s the tumor hurting me or just some random ache–of which chemo has left me with many.

I want this tumor dead dead dead. Kill it with FIRE!

PET scan results in: Still Not Dead. Kill it With FIRE

Saw my radiologist at Emory with the results of last week’s PET scan.

It wasn’t clean. There are still active cancer cells in the tumor location in my nasopharynx/sinuses.

I was really trying hard not to dwell on these results. After the last PET  scan, I didn’t want to pin my hopes on a clean scan, but even with me actively working not to think about it and telling myself that it was unlikely the two rounds of R-ICE chemo would have put me in complete remission, it was still a blow, hearing it.

I did get to see the PET scan this time, as well as the initial scan we did last November and the one we did in March. The good news is that the active cancer area is much smaller compared to both, but then again, if it weren’t, we’d be in much worse shape moving forward. It was kind of astounding seeing the scan from November, how huge the tumor was, how much of my skull it occupied.

These results don’t change our next steps, which is to irradiate the whole tumor area and Kill it With FIRE. It does, however, mean that the radiation course is going to be a little more aggressive, possibly take five or six weeks instead of four, expose me to more radiation all told–which, in a not-funny correspondence, will increase my chances of getting another cancer, leukemia, some years down the road as well as increase the potential side effects. There’s also a chance that whatever is making these stubborn cancer cells not succumb to the chemo will also make them resistant to the radiation, and I won’t go into the stem cell transplant in complete remission. My odds, of course, are much better going into the transplant in complete remission versus partial.

Tomorrow I go in for a CT scan and mask fitting for my radiation treatments. We’re aiming to start radiation next week. 

I’m so tired of being sick. Fuck cancer.

Tweets for the Week of 05-19-2014