Tag Archives: coping with cancer

Tuesday I go into the hospital for my stem cell transplant.

I’ve been battling a low-grade fever for the last couple weeks, brought on, I’m pretty sure, by my stupid human suit freaking out over five weeks and 45 Gy of radiation. I’m taking prednisone now, which is breaking the fever, but it keeps yo-yoing back.

My oncologist said that going into the transplant procedure brimmed up on steroids is fine, but going in with a fever is less so. But we can’t just wait for this flare-up to de-flare, either. Yeah, it’s stressing me out.

Trying to focus on day-by-day next steps instead:

• Every morning this weekend and Monday, we go into the Winship infusion center for them to give me three, two-hour-long pre-chemo infusions of Kepivance, a recombinant keratinocyte growth factor, which will help ease some of the worst side effects of the transplant procedure. Unfortunately, the Kepivance itself is going to be fairly unpleasant, as it will stimulate the growth of the cells lining my mouth and GI tract, making everything…just yuck.

  Of course, I was just beginning to get hints of my sense of taste back. This will utterly wipe it out again. Food and I are not going to be getting along for a while longer.

• Tuesday, they’ll start me on BEAM, a high-dose chemotherapy treatment which will be administered over the course of seven days. It will utterly wipe out my immune system and, hopefully, the cancer. It will also raze all the new hair growth I was starting to see these last few weeks. Sigh. I miss my hair.
• They’ll give me another three days of Kepivance at the end of the chemo.
• I’ll receive an infusion of my own, previously harvested stem cells on day 7 to rescue me from what BEAM will be doing to me. Essentially, my life in a bag, pumped back in.
• Then comes the fun as I endure the brutal side effects of BEAM while waiting for my body to reboot.

One week of chemo, two weeks of recovery, and then, hopefully, they’ll release me from the hospital, weak as a kitten, severely immunocompromised, but cancer-free.

That is the plan.

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.

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.

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.

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.

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.

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.

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!

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.

Went to work today, hurray!

And had my first shower this morning after having my trifusion catheter installed. That…didn’t go so well. The nurse from the hospital supplied us with a packet of these plastic adhesive shower shields to stick over the dressing so it wouldn’t get wet. She told us to use two of them overlapping and to try to keep the area from direct spray.

Two. Overlapping. Avoid direct spray. Check.

Problem is, where the catheter is installed–in my upper chest–it’s all bends and curves. I plastered the plastic shield thing firmly around the dressing, but it gaped and let water in almost immediately, every time I shifted my right arm. Had to truncate my shower and have Matthew help me do an emergency sterilizing and re-dressing of the catheter.

How the hell am I going to be able to shower and keep the catheter’s dressing dry?? Gah!

Tomorrow we begin the fun, fun adventure of daily self-injections of Neupogen. Neupogen will increase my white cell counts but more importantly, it will stimulate stem cell production–which is vital because I’m slated to have them harvested next week for my transplant.

Matthew and I both received training on how to stick me. We’ll see how that goes. I’m betting I’ll be better at injecting me than he will.