Heuristic

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.

After the recent rounds of tests, I’m waiting on a surgical consult again. It’s possible they may recommend chemo+radiation, which would be a continuous low dose of 5-FU (part of my current regime), to further shrink my tumors prior to surgery. Since surgery is sounding likely, my oncologist decided to take me off the oxaliplatin this time, since that’s the liver-harming component of this poison cocktail. If I’m likely to have liver surgery, we need to start with it as healthy as possible. I still got the full dose of 5-FU this time, and am on the pump for another hour. My appointment with the surgeon is at the end of the month, right before my next round of chemo is scheduled.

The 5-FU only dose is much less exhausting than the full FOLFOX treatment. I’m getting more work done, and napping less. Even my food problems are reduced. (I had a whole bagel for breakfast!) Best of all, the oxaliplatin is the one that causes the cold sensitivity: I can drink tap water! And eat ice cream! (Well, I don’t actually want ice cream just now, but in a couple days I probably will, and I’ll actually be able to eat it.)

So it looks like, having settled into a routine, it’s time to break it. I don’t want radiation or surgery, of course, but I want this shit OUT OF MY BODY, even if it originated from my body. Surgery to reduce the tumor load will make chemo more effective, and the radiation will kill off more cells. DIE DIE DIE!

And they are: over the past month my CEA has dropped from 871 to 270. The chemo is working well, and adding in the other technologies will work even better. Science! Science works.

I realize that I never blogged about chemo round 7, and here it’s only a couple days until round 8. It was… unexceptional. I felt lousy, I slept a lot, I felt better. My platelets were up and my liver was better, so no issues with getting the treatment. I expect that a round with lower dosage helped both. I didn’t really want to think or talk about it; I can go whole minutes without thinking about cancer sometimes, and, well. Sometimes not paying attention for a while is the way to go.

I had an MRI last week, and it confirmed the shrinkage seen in the CT scan: primary tumor half the length it originally was (so much reduced in volume. So that’s good. All of the scans have been sent to the surgeon, and I’m just waiting on her and the tumor board to decide what happens to me next.

I have a whole pile of links and other things, but I’ll save those for a non-cancer post so the good and the bad don’t get shuffled together.

CT scan results this morning. I’ve now read them, and my oncologist’s notes, four or five times, both before and after coffee.

Everything we knew was cancer has shrunk, especially the liver Wurst. “… reduced in size or nearly completely resolved.”

I haven’t mentioned it here, but my first CT scan found a couple of spots on my lungs, of the sort that would be utterly unremarkable if I didn’t already have cancer, but since I did could be suspicious but were too small to tell, and difficult or impossible to biopsy.

The approach to those was “wait and see” – if the chemo was effective on the known tumors but those spots didn’t shrink, then they were not cancer. I didn’t mention them publicly because there’s absolutely no sense in fussing about a maybe, especially when there were so many legitimate causes for fussing.

They haven’t changed. In oncologist-speak, “Overall reduction of the previously noted metastatic disease involving the liver noted, stable lung nodules.” Thus, not cancer.

I like the CT report’s phrasing of “nearly completely resolved” better, but that’s not too bad either.

So, incredibly good news as I read it, but as always pending further interpretation by experts.

tl;dr: FUCK YEAH!

I had the food issues worked out, having managed to not lose any weight overall for the past month, despite weekly cycling depending on whether it was a chemo week or not. Not interested in food from Monday afternoon on during the chemo infusion, but not nauseated as long as I took my drugs. Don’t need the drugs after Wednesday night, but the chemo made food taste nasty, mostly just on Thursday and Friday. Appetite and taste returning to normal by Friday evening, except for persistent numbing of tastebuds. Then eat whatever I wanted for the next week, making sure to include lots of good fats like avocado and almond.

It was all slightly variable: how bad things tasted on Thursday, how fast my appetite declined or returned, and such, but that was the basic pattern. It took me a couple rounds of losing weight to figure out how much to eat the second week, but by chemo rounds 4 and 5 I had it mastered.

So of course round 6 had to be different, and nothing is ever different in a good way. This time the poison taste wasn’t too bad, but I didn’t start to regain any interest in food until the next Tuesday, over a week after starting chemo, even though I received a lower dose of the major chemo drug. Today I’m mostly but not entirely over it (the rest is quite possibly the barium after-effects). Sadly, this meant that I cooked a lovely Easter dinner that I didn’t want to eat. I ate some, food being a necessity even if unappealing, but couldn’t eat very much. Part of the lack of foodliness, as I’ve been calling it, is that not only do I not want to eat, I physically can’t eat very much at a time. I haven’t been on a scale, but I suspect I’ve lost a few of the pounds I worked to regain. (Not a worrisome number, I hasten to add, but still frustrating.)

On the other hand, it’s finally getting warm enough that I can spend some time outside. SO HAPPY to be able to start walking again. Not today, though: cold and windy. But it’s getting better.

And while I’m talking about food, don’t let anyone tell you there’s a clear link between cancer and anything: it’s inordinately complicated. Overall healthy is good; beyond that, even the experts don’t know.

I had a CT scan this morning. If they want to look at your digestive system, they send you home with a couple of bottles of barium. The first is to be consumed before bed the night before. The first third of the bottle isn’t bad at all. It’s kind of thick and chalky, but they make some effort to flavor it.

It gets harder and harder, though, and by the end of a full 450ml bottle of barium sulfate, it’s rather hard to take that one last sip.

Then there’s more barium for breakfast, and a last slug right before the scan.

The CT scan itself is easy and quick: I had an 8:30 appointment, and was back in my car at 8:48. They give you an IV contrast as well, to highlight the vascular network as well as the digestive system outlined in barium sulfate. The radiologist is always very careful to warn you that the IV contrast will make you feel warm, and like you peed your pants, but you didn’t really. No idea if that’s the same for men.

Now it’s just the waiting. And, well, the getting rid of all the barium I drank. Did I mention white and chalky?

Meanwhile, I’m now having coffee with toasted and buttered hot cross buns. That tastes a whole lot better.