Fuck Cancer

Today marks the completion of 14 of my 28 planned radiation treatments. I’m half done with this phase of my current learning experience.

(Blue is radiation, and peach is poison peach pills, aka Xeloda. Percentages are for radiation treatments.)

I’ve been meaning to write up the details for the curious; now seems like a good time. And because of the insurance SNAFU, I’ve gotten to experience the two main kinds of radiation therapy.

Both are in the same room with the same equipment, it’s just how the equipment is used that differs. Either way, I drop trou and lie on the table with my legs in a custom-molded cushion to hold them in just the right place. The techs tug on the sheet covering the table to scoot me this way and that, until my tattoo dots are lined up precisely with the laser lines running along and across my body. The techs flee the room, then take a quick image of my innards. The table position is shifted remotely to make absolutely certain I’m in the right place.

The simpler approach, 3D modeling, used the detailed CT scan they took originally to develop a plan. The x-ray head, an enormous thing that can rotate 360 degrees around the table from its mount at the head, is positioned at three different angles, and from each delivers an approximately five-second burst of x-rays. The beams intersect in the tumor, giving it maximum radiation with as little damage as possible to my innards.

The fancy version, IMRT, instead orbits the head around me, zapping all the way, but finger-like projections are constantly moving to adjust the size and shape of the x-ray beam based on an even more complex 3D model. Science is SO COOL!!! A complete circuit takes about 18-20 seconds, and they do two. I don’t know the beam intensities, but the IMRT provides more time of radiation, and I believe more total dosage as well, while spending even less time over any particular bit of healthy tissue. IMRT is the better of the two because it can deliver more radiation with fewer side effects.

And indeed, the side effects have been fairly minimal. I’m queasy starting about two hours after treatment, and lasting 4-5 hours. So I’ve been eating large nutritious breakfasts. I was on an afternoon schedule for a while, which meant I was feeling poorly from late afternoon through bedtime, but I should be on early mornings for the rest of my treatments, meaning I feel lousy at lunchtime (notice me blogging instead of eating?), but have recovered by late afternoon and can eat a normal dinner. There have been changes in bowel function, but not yet serious diarrhea, and I’m also not experiencing the intense fatigue that radiation can cause (yet?).

The Xeloda, though… I haven’t had the predicted skin problems on hands and feet. I’ve been diligent with moisturizers and not washing the dishes much. Instead, I’ve developed tingling and numbness in my fingers and toes (peripheral neuropathy), which is not usually a Xeloda side effect, though obviously it’s possible. This is tremendously annoying, and runs a risk of becoming permanent if it gets too bad, so I’m now taking Xeloda only on days I receive radiation, rather than seven days a week. This weekend was the first I’d tried that, and the numbness receded somewhat by Sunday evening, a good sign. (Also, numb fingers: if there are typos in this post you don’t need to tell me, because I really don’t care.) I can type, walk, etc, but had trouble trying to warp a loom on Saturday.

So, you know, nifty science and not unbearably difficult so far. This young and healthy thing continues to work in my favor.

Federal BCBS has decided to approve IMRT after all, so I’ll start the fancier (also safer and more effective) radiation treatment tomorrow.

How is this not a terrible waste of everyone’s time, and an unnecessary additional stressor?

The US medical care system is insane, and I say that as someone with good insurance and excellent healthcare.

I’ve been reading the recent cancer-treatment-insurance travails of people like Zoe Keating and Eugie Foster, and have been both appalled and glad that my insurance company has been reasonable.

Well, so much for that.

First off, I started radiation a week later than planned, solely because my insurance company took TWO WEEKS to get back to my medical providers. I have federal Blue Cross, by the way, which you’d think would be a good service given the bargaining power of the federal government. Starting a week late means that I’m scheduled for treatments DURING PENNSIC, instead of being done the week before, which makes me more than a bit unhappy. It also pushes back my likely surgery date, making my fall plans less feasible. Thanks, BCBS.

I showed up yesterday afternoon as instructed, having started my scary peach pills that morning. I half-stripped and climbed onto the table. My tattoos were augmented by marker lines covered with clear stickers, images were taken, adjustments were made, I was carefully positioned along laser-marked lines.

The tech came back into the room. “I’m going to lower the table. I’m sorry, but your insurance company has denied IMRT as not medically necessary, although they did authorize regular 3D radiation treatment. The radiation team is making a new plan for you, and they’ll be ready by tomorrow.”

What? My doctors want treatment X because it’s the most effective with the fewest side effects, but my insurance would rather not? At least they’ve approved something, unlike Eugie’s case. The decision is being appealed; the immediate plan is to go with the regular economy-grade radiation treatment, and if FedBCBS relents, to switch over to IMRT.

I discussed all this with both the radiation techs and the nice administrator who’s been dealing with the insurance company for me. (I did contact them to complain about the delay in getting approval, but they never got back to me.) I set up a time for this morning, nice and early (they’re unlikely to be running behind if you show up at 7:45).

So this morning, before coffee even, I was again half-dressed and flat on the table. I mentioned the insurance woes to the new techs, not the ones from yesterday. They… hadn’t heard this, and thought they were doing IMRT as originally planned. So rather than go any farther, they went off to check.

Yep. No change in the insurance status, and the 3D plan wasn’t ready yet, but would be in about an hour. They offered to call me when it was (me being unwilling to wait any longer than absolutely necessary), and so I went out for coffee.

It was just about an hour later, and they managed to squeeze me in shortly after I returned to the hospital. The radiation treatment center is always very busy. This time, ZAP.

Score so far:
Times half-naked on the treatment table: 3.
Actual treatments: 1.
Doses of scary peach pills (Xeloda): 3.
Current side effects: mild queasiness; numb fingertips on my left hand from previous chemo. That will be aggravated by the peach poison, but should fade after I’m done with treatment.

I’ve also lost quite a bit of hair, but it was so thick to start with that you can’t even tell. I need to shave my legs a lot less often now, though.

I still haven’t heard from the radiation oncologist about when I’m actually starting treatment. It should be 7-10 days from last Monday, which is, well, any minute now.

I had my pre-chemo blood work done yesterday anyway. I’m a bit anemic and my white blood cells are a tiny bit low, but neither is anything to worry about, and my platelets are lovely. And this? This is the BEST science:

My CEA is down to 42!

Blood counts or no, I continue to feel better and better as I get farther from my last chemo infusion. My brain is working better: though it’s still an incredible slog to get going on anything, once I get some momentum it’s all good. I may even finish this dratted paper that I’ve been poking at for months. And I walked the dog in the morning for the past three days. Happiest dog ever! The lack of regular dog walking was partly fatigue, but hugely cold sensitivity. I hope now that it’s summer and I’m off the oxaliplatin anyway I can keep up the daily walks. I miss my huge amount of walking. (I walked over 1800 miles in 2013. I haven’t tallied up 2014 so far, but my mileage is greatly reduced.) I’ve been cramming in as much kayaking as possible. I even snuck out after work on Tuesday. Lovely! I’m afraid that the new chemo I start with the radiation will affect my hands and prevent me from paddling, so I’m stocking up on kayak time now.

My brain works so much better after not being poisoned having chemo for almost three weeks. I guess there really are slow sneaky cumulative side effects.

This paper is going so much better now!

Sometime this week I start chemo+radiation, so I’m making the most of this brief reprieve.

Home from my minor outpatient surgery; everything went just fine. I don’t have any problems with anesthesia, and although I’m not allowed to drive or sign legal paperwork until noon tomorrow I feel like I could if I needed to. They gave me a Percocet scrip, but I have some left over from the port installation surgery if I need it, so probably won’t even bother to fill it. I never need as much pain medicine as they prescribe (I only filled half the prescription after the port surgery), and right now nothing hurts anyway.  

They were very prompt; I was in and gowned and hooked up to the IV within half an hour of arriving, only to sit waiting on my bed for another two and a half hours. Once you’re hooked up to all the equipment it’s hard to even knit. SO BORING. 

Yesterday’s meeting with the radiation oncology people went well; it was the informational paper-signing meeting. Monday I have another appointment with them, when they’ll start doing actual science. Go science!

And the mixed part: I asked the radiation oncologist about traveling to Tacoma for Complex Weavers, and he agreed that we could work around missing a few days of treatment (radiation is 5 days a week), but my regular oncologist says I can’t miss either radiation or chemo. SO CRANKY. I get to see Laura every two years: we meet up at Complex Weavers and play with string for a few days, and have a wonderful time. Plus, it’s over my birthday, and I was really looking forward to a break and a trip. I’ve done nothing but work and cancer for all of 2014 so far. Instead, I’ll be home having chemo and radiation for my birthday. REALLY NOT AMUSED.

I will just have to do ALL THE TRAVELING after I’m done with treatment, including a trip out to Portland to see Laura. I’ll miss attending the conference, but we can play with string on our own time. At least I’m not scheduled to teach this year. 

I have wonderful doctors, and am receiving excellent medical care. They all communicate well with me and with each other, and are exceptionally efficient at scheduling things when necessary. This is excellent, and I appreciate it, but sometimes it is rather overwhelming.

When you start imaging people, you sometimes find random things. Both my recent MRIs showed a largish uterine polyp. No changes in it between images, and it apparently looks just like a polyp. But there’s a rare genetic condition that increases risk of both colon and other forms of cancer, including uterine (Lynch Syndrome), so I was referred to a gynecological oncologist (which is far too unwieldy a phrase, so everyone refers to them as gyn-oncs). They set me up a consult for Monday.

The gyn-onc explained Lynch Syndrome to me, assured me that this thing looked just like a standard non-cancerous uterine polyp, but that she wanted to take it out anyway. How about Friday, since I’m probably starting radiation next week? Er, okay. Oh, and in Danville, because she only does this procedure in the OR, and she lives too far away to have OR privileges at Mount Nittany. Er, okay. WonderfulFriend has agreed to drive me to Danville once again, where I can have more bits poked, prodded and biopsied.

This one at least is a totally unnecessary and unwanted bit. I’ve had heavy periods my entire life, and removing this polyp will probably help with that. (Chemo. Some lucky women don’t have periods when they’re on chemo. I am not one of them: I’m over three weeks into the heaviest period I’ve had in my life. I am anemic, cranky, and greatly hoping that polyp removal will help with that too.)

In the unlikely event that the biopsy comes back positive, well, I’m starting pelvic radiation real soon now, so there’s no big rush to do anything else. The polyp will have been totally removed anyway, and the radiation will take care of the area. Beyond that, I won’t worry about it unless I have to.

In other news, that $900 drug? My actual copay turns out to be $15. I do not understand the medical system at all, but I’m pleased with this particular result.

This post is dedicated to Jay Lake, who faced his own cancer diagnosis with an honesty and forthrightness that I admire, and am trying to emulate. Even in the topics that nobody talks about, like this post. I told him so, and he was kind to a newly-diagnosed colon cancer patient. Thanks, Jay.

I just got unhooked from chemo Round Nine, another light round with no oxaliplatin. Thus, no cold sensitivity – hooray! The lighter dose means slightly better food tolerance (I had real food for lunch yesterday!), and less tiredness.  This time around my platelets are back into the normal-people range, but both red and white blood cells are a bit low, and I’m slightly anemic (let’s not talk about what low platelets and chemo do to menstrual periods, except I’ll talk about that if anyone wants or needs my experiences. Silence sucks.). Nothing too bad. 

I have an appointment with a radiation oncologist next week to plan out the next steps. My understanding so far is that I’m done with infusions for a while, but will be probably be doing radiation five days a week, and oral 5-FU (Xeloda) seven days a week, though at a lighter dose than I get via infusion. I had the option to have a seven-day pump instead, but oral sounds a whole lot more convenient. The velocikittenraptors would be VERY upset if I couldn’t ever play with them because of dangling tubing, and it’s all about the cats, right? Also, all about the showering without worrying about bandages that must stay dry.

So, oral chemo. This is not something you can get at just any old pharmacy, of course. The specialty pharmacy called Wednesday to tell me that the copay would be $900 for 28 days of pills. <em>EEEEP.</em> They have a person whose job it is to help patients figure out strategies for paying really high copays. Most of the options are for Medicare patients, or those with low incomes, and I’m neither, but I talked to him anyway just in case.

I think it’s great that the specialty pharmacy has such a person, but appalling that such a job needs to exist.

After some further discussion with my insurance company, entirely done by the pharmacy folks, they figured out that if they send the prescription to a <em>different</em> pharmacy, the copay will only be $100. I’m very impressed that this pharmacy (CareSite, a Geisinger subsidiary) would both do the legwork and then give away the prescription. Thanks, folks.

While there are plenty of horror stories out there, so far I’ve had very good experiences with both my insurance company (Federal Blue Cross), and with both my medical care and all the infrastructure surrounding it. I’ve already hit my maximum annual out-of-pocket cap, so many things should be completely covered from here on out. I can’t imagine having to deal with insurance nightmares on top of having cancer. I feel very lucky, which in itself is kind of appalling. Why should luck have anything to do with getting good medical care?

I had a consult with the colorectal surgeon today, to discuss plans now that I’ve had however many rounds of chemo and a new set of scans. She agrees that I’ve had a good response to the chemo, and wants to plan on surgery.

But first… there’s always something else. My particular tumor, right on the line between colon and rectal, is of a type and in a location where the outcome is improved by radiation. I’m going to be stopping the heavy-dose chemo, and instead having radiation and lower-dose chemo: 5-FU, but continuously or nearly so instead of the three days on, eleven days off I’ve been doing.

There will be 4-6 weeks of that, followed by a 6-8 week recovery period prior to surgery, which puts surgery around the end of August. Which means I probably can do many of the things I want to do this summer, depending on how well I tolerate the radiation. I’ll have to talk to my oncologist first, to see what he thinks about traveling. But at least I won’t be spending my whole summer recovering from surgery. It does make World Fantasy a bit iffy, but not necessarily impossible. That will definitely be a wait and see event.

I’m not sure what this means for tomorrow’s planned chemotherapy. Maybe nothing, maybe I’ll get to skip it, maybe I’ll get to skip the oxaliplatin again. It was really very nice to have a couple weeks without the evil cold sensitivity. Not that it was cold out, but the whole “tap water is like drinking broken glass” thing I could do without. And the ability to take things out of the refrigerator without pain, I like that part too. Four weeks after the last dose of oxaliplatin I’m even able to get things out of the freezer.

I’m willing to do whatever is most likely to work, but still. It’s nice to get a break. I think I should have some ice cream now, just in case.