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 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.

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More Trifusion Catheter Fun (or “How ‘n heck do I shower with this thing??”) and Neupogen Self-injections

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.

Tweets for the Week of 04-28-2014

In the Hospital for Round 2 of R-ICE Chemo

Back in the hospital for round 2 of this cycle of R-ICE chemotherapy. Had to have a blood transfusion: two units of O+. I expected to have another allergic reaction, as I have for both platelet transfusions I’ve received so far, but the pre-transfusion meds of Benadryl, Tylenol, and hydrocortisone seem to be doing the trick. No allergic reaction. *crosses fingers*

Huge thank yous and big virtual hug to everyone who’s asked if they could directly donate blood to me. I’m O+, which means I can only receive O+ or O- blood products, but more than that, I’m a transplant patient with a really messed up immune system. There’s extra persnickety screening and matching requirements for anything I receive, making it terribly unlikely I’ll be able to use folks’ directly donated blood products, plus everything I receive needs to be irradiated, which is done off-site.

So between the time constraints and the persnicketyness of my blood product requirements, I can’t really accept offers of direct blood donations. However, I really do encourage everyone to donate to the general pool if you can. It’s because of awesome folks like you that I can get all the various blood transfusions I’m having to receive. *HUGE hugs*