Tweets for the Week of 07-07-2014

Radiation Week 5: Counting Down the Days

Four more days of radiation, and it can’t be over soon enough.

New side effects: nosebleeds and fever. The fever is low-grade, probably just my stupid human suit being stupid, as it is wont to do when it gets stressed. The nosebleeds are not unexpected but are getting worse. The doctor said we pretty much have to ride them out; they’ll pass once we stop barraging my nasopharynx and sinus regions with radiation and my body gets a chance to heal.

Also getting weaker–dizzy and lightheaded more often than not when I stand up. Think that’s the fatigue hitting harder. Mentioned it to my radiation oncologist last week, and he didn’t think we needed to do labwork to check whether I was anemic, as radiation shouldn’t be hitting my counts like that. But fatigue, yeah, fatigue we has it.

Food continues to be a trial. My mouth and throat hurt enough that I’m taking Percocet now to get me by. Can’t taste anything, of course. Most of my meals are liquid these days–protein shakes and nutritional supplements, sometimes mixed with ice cream to boost the calories. Also some rice porridge with an egg and blended vegetables stirred in. I can still handle a bit of fresh fruit, but anything bread or pasta-related is too dry for me to swallow.

Four more days. Then I can start healing…and getting ready to go into the hospital for my stem cell transplant.

Radiation Week 4: In the homestretch, just want this wretchedness behind me

Today will mark my 18th radiation treatment. I’m slated to have 25 total (for 45 Gy of radiation in all) so we’ll call this “the homestretch.” Squinting hard to see the light at the end of the tunnel.

The fatigue has gotten worse, as have the food issues. I can’t taste anything now except for a pervasive metallic chemical tang that permeates my mouth whether I’m eating something or not. My mouth is so raw and sensitive, as soon as one patch heals, another takes its place. I guess I should be glad I’m healing at all, but I’m not really in a glass half full mindset these days. I’m getting meals down by sheer willpower, chewing and swallowing because I have to, although I want to gag at every mouthful. I’m trying to keep from losing any more weight by hitting the liquid supplements harder, as my radiation oncologist and his staff have advised.

Yesterday marked a change in treatment radius. The amount of radiation (the fraction) they’re blasting me with on a daily basis remains the same, but the location is now smaller. Before, they were irradiating the complete tumor zone plus a two-centimeter perimeter around it. Now, they’re just zapping the tumor region, so it’s a slightly more concentrated, more focused delivery.

I noticed yesterday a scent perception change during my treatment. Before, I could always smell when the radiation started. It’s a burnt ozone/rancid chemical scent–very distinctive and quite sharp–that I always got for a few moments just as the radiation began. Yesterday, I still got that smell, but it was much fainter, more like a passing whiff than the usual overwhelming barrage. Didn’t occur to me that I was smelling the radiation because of where they were irradiating. I thought it was just the smell of the machinery as it went on. Seems instead that a two-centimeter shift in location changes how the radiation hits my olfactory receptors.

I’ve also finally gotten a date for my stem cell transplant. I’m slated to go into the hospital on the 29th. A part of me is going, “Yay, we’ve finally got a timeline for the main event!” but the rest of me is going, “I’m already at the frayed bits of my endurance, and the stem cell transplant will be even more brutal than what I’ve already gone through. Wah!”

I just want all this behind me already.

Tweets for the Week of 06-23-2014

Dancing with BCBS: An Exercise in Frustration and Futility

Blue Cross Blue Shield is giving us the runaround.

First, they won’t speak to Matthew without a form from me giving my consent for him to discuss my medical/insurance situation with them. Okay, fine. HIPAA privacy laws, whatever. I need Matthew to represent me because I work during the day during their business hours, it hurts to talk and I’m exhausted from radiation side effects, and I simply can’t spend hours on the phone on hold waiting to argue with a BCBS representative. So form duly requested, received, filled out, and sent in last week.

Of course, now they can’t find it.

They also can’t find the reference number for my radiation oncologist’s peer-to-peer discussion with their oncology representative, without which our appeal can’t move forward (it took an hour on hold for us to ferret this information out). Now my doctor needs to have another peer-to-peer meeting with their doctor because BCBS lost paperwork.

Nor, apparently, can they find anyone who will take responsibility for my case. They keep forwarding us from person to person, none of whom knows what’s going on or can effect any movement, take action, or make a decision regarding our appeal.

So frustrated. So furious.

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.