Fuck Cancer

Sarah is through the first phase, the colon surgery, now the second specialist in going in to do the liver job.

Sarah is through the first phase, the colon surgery, now the second specialist in going in to do the liver job.

I just talked to the lead surgeon, Dr Hald. She says, nothing laparoscopic, everything will be knife work.

We are at Geisinger Danville and all checked in. At this point, you go up to the pre-surgical waiting room…..

……where you are only allowed to take one person with you.

So Sarah’s Mom, Maureen, is up there with her. Having suspected we might wind up in some sort of holding pattern Hell, I have my laptop (and my Nook, and my DS) and the comfy headphones and a stack of movies and games ans so forth. So, I’m settling in for the siege.

The rough schedule is, first Sarah has a ~40 minute procedure to set her up (with a stent, I think;) then, at some point presumably not long after that, she has a nominal four and a half hour block scheduled for the actual surgical procedure.

It’s a double procedure, with one surgeon going after the mother load in her colon, and the other aiming at the second chunk of evil, in her liver.

They might be able to do part of that laparoscopically, but apparently that call will be made once they start and actually see what it looks like.

I’ll keep you all updated when anything happens.

Fuck cancer.

Nick

We just got the scheduling phone call for tomorrow, which is how Geisinger works. We check in at Geisinger Danville at 6am, which means we leave here between 4am and half past.

Whee!

It’s the Drang Nach Danville.

And from State College, that IS a drang nach osten.

This is a test. This is only a test. If this were a real post, Sarah would ALREADY be on drugs!

For those of you who don’t know me, I’m Nick, aka Mr Sarah. I will be trying to keep you all updated through that period where Sarah is too stoned to type.

If, anytime in the next week or two, anyone really really needs an update, or their hand held, RIGHT now, emailing me at

thorvaaldr   at   gmail    (etc)

Is the way I am most likely to see the fastest.

I mean, I could give you a phone number, but I honestly do check my gmail MUCH more often than I check my voicemail.

Meanwhile, I’ll be here, feeding the kittens.

TTFN,

Nick

The insurance company assures me they are re-running my claims and all will be well: the half that didn’t approve my IMRT has looked at the other half’s paperwork and approved it.

As insurance problems go, I’ve had very minor ones that have been resolved effectively. I’ve heard some amazing horror stories.

I still strongly support single payer health care, though. The US system is insane.

Last week was all the medical things: MRI, appointment with liver surgeon, appointment with urology (the latter two mainly to be informed of all the things that could go wrong and sign consent forms), and then the full afternoon in Danville to be poked and prodded.

Pre-surgery physical, blood work, EKG, yadda yadda yadda. I continue to be disgustingly healthy, except for the obvious. I also got information about pre-surgery prep (much like colonoscopy prep), post-surgery care (not allowed to eat ANYTHING I LIKE for quite some time: no whole grains, no nuts, berries, vegetables, etc. I can have canned vegetables. [Blergh.] I will be living on poached eggs, white bread, and plain yogurt apparently. Fortunately that’s only for a few weeks, then I should be able to gradually start eating like myself again.

I will have a temporary ostomy, so one of the stops was to meet with an ostomy nurse, who explained the procedure (the science is so very cool!), the basics of ostomy care, let me play with the apparatus and then gave me the sample to take home. I very much like the ostomy nurse, and she agreed at the end that she was indeed going to go off and tell her colleagues about the entertaining patient who compared herself to a fistulated cow. (Biologists do not have the same sense of humor as regular people, nor do nurses.)

So that all went very well, and it was a nice day to drive to Danville (it’s a pretty drive in good weather), and we stopped for chocolate milkshakes on the way back.

And then I got home, and discovered a $67,289 bill for the radiation therapy my insurance company had approved before we started. Remember that? The fun of dealing with Federal BCBS to get my treatment declared medically necessary, and the three-week delay getting started? Apparently they changed their mind somewhere along the way and didn’t bother to tell me. And of course it was after business hours on Friday, so I gathered my paperwork and fussed all weekend.

This morning I called my contact (if you’re given a name and a direct number for an entity like this, SAVE IT). She was very nice again and explained what happened to me.

This is horrendously complicated…

There are two parts to the Federal BCBS, entirely separate entities apparently. One handles the professional claims, one handles the facilities claims. (I knew there were two addresses, but not how this worked.)

The professional side, the employer of my contact, deemed IMRT medically necessary and approved it. The facilities side did their own investigation and decided it wasn’t (just as the professional side originally did).

So the professional side is going to send all the documentation to the facilities side, which will presumably now cough up the money, or whatever small portion they can get away with paying.

My contact also tells me that the message at the bottom of my explanation of benefits is correct, and that the provider is contractually prohibited from billing me for the amount that insurance didn’t pay. Which kind of baffles me, but means I may not be liable for the $67k even though the provider billed me.

Except for slapping around insurance companies as necessary, I have the entire week free from medical anything. I feel great, and am hoping to sneak one (or two!) more kayaking trips in. I’m pretty well caught up at work, with a few exceptions, and have only a couple things to do at home, like mow the grass this weekend. Everything else can go hang.

I got my CT results this morning. They look great. I mean, I still have cancer, but the liver tumor continues to shrink, and my lungs are clear.

(insert enormous sigh of relief here)

That puts me on track for surgery on September 23, which if all goes well might turn me into someone who does not have cancer. (That and another six months of chemo, anyway.)

I’ve been trying to be a positive-leaning realist throughout this; the latest news pushes reality itself in a positive direction.

My trusty black Sharpie has crossed off all the days. That must mean I’m done!

That would be 28 days of radiation (blue) and 34 days of poison peach pills, aka Xeloda (peach, of course). (Technically I have one more dose of Xeloda to take tonight, so I’m not really done, but close enough.)

The radiation oncology office agrees with my count, fortunately.

It wasn’t horrid: I never got the extreme fatigue or extreme diarrhea that pelvic radiation often causes. I’m tired and my digestion is sub-optimal, but neither is debilitating. Also, with the radiation I may finally have hit the no menstrual periods jackpot, rather than chemo-induced horrid ones. That would be okay, really.

The Xeloda hasn’t been so bad either. All the skin is still attached to my hands and feet, which I am terribly happy about. The main side effect for the poison peach pills has been numbness in my hands and feet. It’s a good thing it’s time to stop taking them, because the numbness has spread to the point that it’s problematic instead of just annoying. It retreats a bit on pill-free weekends, giving me hope that I have not inflicted permanent nerve damage on myself in the name of staying alive.

I haven’t been exercising as much as I’d like, obviously, since I can’t really walk to work and back when I need to be at the hospital every morning. I probably shouldn’t commit to that much walking anyway. I’ve been walking the boxer and doing yoga, pretty close to daily for both. It’s clear to me that I’ve lost both flexibility and muscle tone. I’ve done pretty well not losing more weight, even with radiation sickness (reliably from two hours post-treatment and lasting five hours, at least; often it’s completely gone by dinner time, but not always). (Cancer treatment: where losing two pounds is cause for comment by a nurse, a PA, and a doctor. “Are you sure you’re eating?” “Yes, positive.”)

What’s next? I get some time off to heal and recover. I have an appointment with my surgeon in two weeks (the 20th) to plan what’s next. The optimum window for surgery is 4-6 weeks after radiation, and I imagine there will be a CT scan and probably a colonoscopy before then. (Which makes three colonoscopies in 2014; there should be a law!)

In a couple of weeks, I shall be going on a sushi and cocktails expedition, because both of those have been forbidden to me (compromised immune system, liver-damaging drugs; neither has been very bad, but I’ve been being good). I’ll be sleeping, kayaking, reading, and trying frantically to get caught up on my work goals for 2014 before I’m out of the office for two months, while trying not to fuss about how everything is going to fall apart without me. (Not at work; work is well-organized. At home.) I’m not worried about the surgery itself, but about the two-month recovery period. Eeep.

Reading: I will be exerting great willpower to avoid diving into two things I’m saving up for post-surgery recovery reading: the complete run of Shadow Unit, and the complete run of C.E. Murphy’s Walker Papers series. I’ve read large chunks of both, but both series are now complete, and I highly recommend them.