Poop.

So, looks like I got the chemo poops last night. I emptied the bag 5 times before bed (never letting it get really full, mind you), typically about an hour apart, and then woke up just after 6am to an epic blowout like I haven’t had in quite some time.

And so there’s stuff in the washer on the Steam Sanitize cycle, and I gave a lot of me a washcloth bath (hard to shower with the chemo pump attached), and that was fun.

I’ve also already emptied the new bag once.

So, I hope your morning has been less shitty than mine.

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I got the hookup.

We’re home from the infusion center. Everything went well from start to finish. To my utter shock, my port was clear and didn’t even require heprin to clear clots at all, even after nearly 5 months of disuse.

I’ve got the pump in its bag attached to me, pumping its 200ml of Fluorouracil over 46 hours.

Missed most of the bad traffic coming home.

And so far, nothing weird has happened, but there’s still time. No adverse reactions, no side effects yet. I’m starting to feel a little tired, but that’s a minor issue, really.

Kim was apologizing for not engaging me in conversation and I’m thinking “why would this be any different than any other time we’re together doing introvert things?”, but it was nice just having her there. She got us Fuddruckers-branded-but-not-really-Fuddruckers cheeseburgers from the in-clinic Luby’s (Luby’s owns Fudds), thus avoiding the lemon (salt) and pepper (salt) salmon today. I’m still eating all the bread products until my mouth goes off.

Oh, and I’ve snacked back some weight: came in at 228 lbs this morning, up about 9 pounds from 3 weeks ago. This may sound like a bad thing, but it’s not, given that I’m likely to lose more between now and the last infusion on November 5th.

That’s about all the news here. I’m sure I’ll doze off at some point. This stuff makes you feel like you’ve done all the things, even though all you’ve really done is just sit there and occasionally go to the bathroom (because IV fluids).

But… while I’m thinking about it: a week or so ago, I posted a pic Erin Meyers took while we were all at Public Services weekend before last. It was the first pic of me I’ve let out into the wild since the treatment started. And it got a lot of “you look great!” type comments, which I appreciate, but it seems that came about because I’ve dropped 80ish pounds from where I was before. And yeah, I needed to lose weight, but I’ll say yet again that the Stage IV Colon Cancer diet plan is wholeheartedly NOT┬árecommended. And the healthy appearance is largely an illusion, given that what’s going on inside my torso is decidedly unhealthy. Just remember that how someone looks on the outside doesn’t tell the whole story, and some folks can’t help what’s going on with them. Sounds kinda trivial, I know, but it’s been bugging me and now you know why.

Getting ready for the needle

Wrapped up the stuff I was working on at work, handed the drawings off to be checked, got my “no deadline” next thing to fiddle with, cross-loaded all its files onto the work computer so I don’t have to wrangle them through the VPN, on the off chance I don’t feel like going in, but want to get some work done.

Then went and had lunch with some flagger friends, picked up a few things from the grocery store (including this year’s w00tstout release, which will be racked up in the wine fridge to mellow, and also because I can’t drink it right now anyway), got home at a reasonable time, and I’m planning a pretty tame weekend.

I forgot to mention that last weekend’s excitement included an appointment with the eye doc and now I’ve got 2 new pairs of glasses in the works. One pair will be “normal” progressives, and the other will be set up for computer use, with the “mid” rage of the progressive stuff going almost to the top of the lens. I’m not getting new sunglasses as my scrip hasn’t changed that much, they’re still in great shape, and also Oakley is really proud of their progressive lenses.

Then we went down to Public Services and I drank mint limeades, a.k.a. virgin mojitos, because I’m still trying to be a good boy and not stress my liver and its mets, and then we finally made it over to Nancy’s Hustle for dinner. It’s co-owned by our friend Sean, who we met when he was the general manger at Public Services, and though it opened last November, that was right when things went pear-shaped for me, so we hadn’t gotten there yet. That has been rectified. The food was awesome, and the service just as awesome (Sean’s a wizard at getting the right people to make the front of the house work very well), and we’ll be back there as soon as we’re able.

It was really nice to see folks, be seen by folks, and do something resembling normal. Of course, won’t be able to do much of that for the next 12 weeks or so.

I did something a little different this time: I’ve put all the chemo dates on the calendar. I know when it’s going to end. It’s not that bad. It’s not that long. The last hookup is the 5th of November. Now that I’ve seen this, it’s more manageable, at least in my head. I was kinda out of it when I started the first time, but I’m far more aware and certainly far more familiar than I was then.

Okay. One more weekend. Then we can do this thing. And we’re gonna do it.

Just Begin… Again

Yesterday’s CT was uneventful. I haven’t really heard anything about the results yet, but that doesn’t stop the world from turning…

…and thus I am going in for Chemo #7 (I’m keeping cumulative total count, whatever the medical system says be damned) on Monday.

Which means I also canceled my registration to work *something* at the USGP in October. When I signed up, that was when I thought I’d be restarting chemo at the beginning of July and be done by then. Instead, I’m starting at the end of August and the last one (#12) will be on November 5th. So when the USGP happens, I’ll likely be deep in the side-effect weeds. Sucks to break my 100% record for F1 at Austin, but I’m ready to get this done.

I think.

I’m going to lose a week of billable time next week, which kinda sucks, but I’ve got 4 solid weeks in for the month (well, I will after this week is over).

And there’s a non-zero chance I’ll have chemo brain on my 50th birthday, in keeping with how Significant Days are being celebrated here since my diagnosis.

But… on the plus side, I’m going into this with some semblance of physical function, versus the last time coming off surgery and a 2nd hospitalization. And I’m going to try to get some work in on the off weeks – I tried that the first go-round, but I was just too wiped. This time, maybe I won’t be.

Kim’s going to go with me for the first couple of infusions, but as things accumulate in my system and my ability to function during and immediately after treatment may deteriorate (not to mention I don’t want Kim to burn all her available days just to schlep me around), Dad’s going to come down starting with the 3rd one.

Yeah, I know there are a lot of people who want to help us. The problem is y’all have day jobs, this happens during the day, none of you live particularly close to us, and at some point I’m going to need someone who can just stay here with me and make sure I don’t fall over. I don’t really feel right about asking people to burn vacation days and tanks of gas to sit here while I crash in the recliner and try not to drool while watching TV. And we may rotate Dad out as some of my other relations have expressed an interest in pulling a shift.

Oh… poop update: the oral contrast stuff they make you take for a CT goes through the system pretty quickly. Right after the scan, I had to empty the bag. So I did. Got it cleaned up, buttoned back up, stood up to go wash my hands, and… went right back to empty it again. After that, got changed back into my clothes, and as I walked out of the changing room… time to go empty the bag again. Then I grabbed some lunch on the way to the office, got there, and had to go empty the bag again. And did it again when I got home. Then I changed it before bed as a breach was imminent. So that was a pretty poo-intensive day.

Progress

Pre-chemo CT scan scheduled for Tuesday. The oncologist wants a fresh baseline so we can see how much bonce-back the nasty stuff made since April (my hunch: not a lot, given the blood marker numbers and that this seems to be some slow-growing stuff as far as cancer goes, which of course is a Good Thing), and so we’ll have a good comparison for what it looks like after 6 more rounds/sets/whatevers of FOLFOX.

Trying to wrap up some stuff at work so I can go out again without leaving stuff hanging for someone else to finish.

And in keeping with tradition(?), there’s every chance I’ll spend my 50th birthday with chemo brain. I spent Christmas and New Year’s in hospitals, so why not this, too?

In poop news, I’m somewhat disturbingly learning what impending poop doom feels like and I’m starting to make it to the bathroom and open the bag into the toilet and avert poopocalypse. Had an episode on Sunday where a fresh bag breached almost immediately (I have a theory about that), and I’ve had a scare while stuck in evening rush hour traffic in the last week, but that crisis was averted until I got home. I’m pretty sure the current poop cycle is a consequence of the antibiotics I’m about to wrap up, but hey, better than it staying in.

As far as the fresh-bag breach on Sunday, I think the paste (aka caulk) hadn’t had a chance to set up properly, and thus was susceptible to failure when it saw pressure before curing. So I put the replacement bag on without paste and it held until this evening. I’ve also modified the stoma hole in the bag to better match my oddly-shaped stoma, and that seems to help.

Since I’m going to have this thing for at least another 4 months (3 months for chemo and a month to purge it from body before surgery… that’s the plan, at least), I might as well try to hot-rod it for improved function. I still hate it, of course. But I need it, so might as well make it easier to deal with.

And related to this, I really want this to work right this time, so that I can be on Boat in March without having to pack a bunch of bag supplies as a just-in-case. I’ll find a way to go with the bag, of course, but I’d really rather not, thanks. Kim and I were talking about this last night, and we both really really need Boat, especially after 2017’s “incomplete” due to injury and having to miss 2018 due to cancer treatment. We’ve had almost 3 years of crap happening to us, and it’s time to make something go right.

Okay, that was unexpected

Had the appointment with the surgeon this morning. He’s pleased with how the antibiotics have knocked the infection down, so much so he gave me a 3rd course of them to really kill ’em (we hope), and…

…he’s recommending that I restart chemo instead of having surgery right now. Because my body is doing what it does, the only thing he can guarantee when opening me up is cleaning out the infection and installing a drain, which is what I’ve already got going. And he’s with me in the idea that opening me up on a maybe isn’t a great idea, when I seem to be able to manage the infection medicinally. And that means I go into chemo a bit stronger than I would post-op, which I’m thinking is a positive. It’s still going to suck, but maybe it’ll suck a little less if I’m not also trying to relearn how to sit up from a laying position, and stand from a sitting position without using my arms.

So, we’ll be getting the chemo restart scheduled soon, I expect, and then a month or so after the last of this next set of 6, THEN we operate.

Not what I was expecting to happen, but at least we’ve got a plan to move forward.

Saturday Status and a money FAQ

Well, made it through the week with only two additional calls from either my insurer or MD Anderson to rub salt into a wound.

All I can say about their practices is that if I, someone with resources and a case that’s serious but not really dire in the sense of needing the applied wizardry that MD Anderson’s doctors are good for, get this kind of treatment, it’s just something enraging, but it’s not going to significantly impact my ultimate outcome. I can do Plan A.5. I’ll keep going, a little sadder at the state of the system, a little angrier at how it impacts people with less rope to hold onto than I have, but I will keep going.

But imagine being someone with a weird and aggressive brain tumor – and there’s a doc at MDA who’s cracked its code. Your oncologist gives you a referral, and your clinic system approves it, but your insurer denies the facilities approval for MDA. And while you’re processing that, someone from your insurer calls and dangles a little glimmer of hope in front of you… so they can just yank it away again. Then the next day, someone from MDA calls to see if you want to “close your account” that never had any charges on it because without the insurance approval, you can’t get past MDA’s Financial Clearance Center to even *schedule* an appointment with their doc.

Sure, you can appeal, but that process, even when requesting “expedited” review, can take weeks or months, which you don’t have to spare waiting for approval.

The possible fix is there. You can see the building it’s in from your doctor’s office, but you can’t get through the door unless either your insurance reverses itself and approves it, or you pony up tens of thousands of dollars up front. Or somehow qualify for a clinical trial (I read up on the ones MDA is doing for colo-rectal cancer. They’re incredibly specific in what kind of person they want – “East Asian female between 20 and 25 years old with both of these two specific genetic markers who has not yet received any treatment for cancer of the ascending colon” is something I made up, but consistent with the kind of descriptors going with these studies. Needless to say, not many people qualify).

Sure, I’d cash out my IRA to save my life. Or at least try: I’m quite positive I don’t have enough in that account to cover even the standard treatment I’ve received to date. A single chemo infusion with FOLFOX is $28,000. I’ve had 6 (so, $168,000). My two hospitalizations so far total well north of $100,000. The ambulance ride was over $6000. The anesthesiologist had charges. I’ve had 4 CT scans that run about $3800 apiece ($16,400 total). And a lot of specialist appointments. Oh, and one of the antibiotics I was prescribed was north of $2400 for 6 pills. The genomic workup that gave us assurance that my cancer is normal and treatable and I don’t have the markers for the nasty recurring kind was $28,000ish. If I’d had to pay cash for all that, I’d be somewhere in the low six figures in debt after exhausting my IRA (and paying taxes on it), and I’m about 40-45% through my treatment, assuming I don’t need a third set of chemo infusions (top tip: don’t make that assumption).

Again, my treatment, aside from the ongoing secondary infection issues, is stone conventional. I don’t need experimental treatment. I don’t need clinical trials. So I can stay within my network and get quality treatment covered (aside from copays) by my insurance. Hell, I might even hit the OOP max this year ($7320). Oh, wait, I won’t. I was 5 dollars short ($4995) in 2017, not that I got any bills aside from some minor copays in 2017. All the big ticket stuff billed me in 2018. And doesn’t count against 2018’s OOP max.

So, yeah, especially for my readers not in the United States, our system is severely borked compared to the single-payer systems used elsewhere.

But hey, there’s some good news! There’s a blood marker for colon cancer called “CEA” on reports (do not ask me to expand that acronym, ’cause I can’t). The “normal” range is 0-4.7 units. In December, I was at 71.1 units. In April after chemo ended, I was at 3.0 units. Tuesday, I was at 2.8 units. Per the oncologist, this means my cancer isn’t getting aggro in my too-long layoff from chemo. It’s still *there*, of course, but it’s not growing aggressively. This is consistent with what they told me at the start, that it’d probably been growing 2-3 years before it became a noticeable problem.

So that’s good.

Now, for the FAQ:

Enough people have asked why I don’t just apply for Medicaid to cover all this. Several anecdotal stories from states other than Texas about full coverage, etc.

Well, I’m glad that worked. ‘Cause it won’t work here.

Medicaid, for those who don’t know, is a federally-funded medical care program for low- and no-income people. But while it’s federally-funded, it’s up to each individual state to administer those funds within their state. So there’s 50 different sets of rules for Medicaid.

And in Texas, where we have a state government firmly committed to making sure no brown, black, or female people get any sort of “leg up” to help them climb out of poverty (which is, of course, due to laziness, not circumstances of birth, medical problems, education, minimum wage too low to be livable, or any of the real reasons people are poor), the rules for being accepted to Medicaid are pretty stringent, and then you have more rules to abide by to not get kicked off it (note also that Texas refused the ACA-related Medicaid expansion dollars because accepting them would mean having to cover birth control. Not abortion. Birth control. So they passed up tens of millions of dollars annually because the old “Christian” white men in suits running the show — and yes, this includes the people who vote for them — think sex should be for procreation only).

So, I made too much money in 2017 to qualify for Medicaid in 2018. And I’ve already made too much money in 2018 to qualify for Medicaid in 2019 – even missing basically 4 months of work entirely and only being part time since May. (Recall that I don’t get paid if I don’t work.)

And I have private insurance. Which I’d have to drop to qualify for Medicaid. This, by itself, is problematic for reasons that should be very very obvious.

And one that’s less obvious: if I stay on my insurance plan, even if Texas AG Ken Paxton (who is still under indictment for securities fraud, mind you) is successful in getting the ACA’s preexisting condition coverage provisions overturned in the courts, I’m still covered. But if I drop my coverage and Paxton wins out, it’s going to be totally impossible for me to get new private insurance coverage unless I first get a job at a sufficiently large corporation that can force an insurer’s hand under the employer’s group plan. And of course, the number of sufficiently large corporations willing to hire someone actively undergoing cancer treatment and unable to work full-time is a number I can count on the fingers of no hands. And the number of sufficiently large corporations who would extend benefits to someone who can only work part time under irregular hours is an even smaller number (we’re getting into quantum levels of zero here).

So, to qualify for Medicaid in Texas, I’d have to stop working now and not work at all in 2019, and drop my private health insurance. And then I might qualify for Medicaid in 2020. Or the state may change the rules again and I don’t qualify.

This is not a game I’m willing to play. It’s Russian Roulette with 5 rounds in the cylinder.

So, I’m going to keep working as I can, and keep my private health insurance, even though 2019 is looking like another big premium jump thanks to the GOP-led Congress and the “all hat, no cattle” guy in the White House.

And now you know.