Hitting the Reset Button

Okay, so today I met with my oncologist. Here’s something for you: every single person I deal with in that office, from the receptionists to the nurses to the doctors, is just awesome. These are people who see people every day at their worst, and they unrelentingly give each and every one of them their best.

While my doc knew of some of the saga, I filled him in on the rest of it. He’s of the opinion that I don’t need MD Anderson… and he used to work there. One of the reasons he doesn’t anymore is MDA’s money-forward focus. He said 10ish years ago when he was there, it was $10k up front just to get in the door, and he suspects it’s more like $20k now.

So my estimate that the consult would run $1200-1500 was off by an order of magnitude.

(Side Note: I. Will. Not. Crowdfund. My. Treatment. So please don’t suggest I start a gofundme or similar. While I locked my dignity in the fire safe for the duration of my treatment, I do have some pride (which is different from dignity) left. I’m still working, still earning, still paying the bills. Yeah, I’m not full-time, and when I go out on surgery/chemo, I’m not really working much, but I got through it at the beginning of the year, and I’m getting into a position to get through it this next go-round. I appreciate everyone’s concern about this, but I can’t ask that. For starters, many of my circle who would be most likely to give to such a thing are not in a position where they should be giving money to me. They’d do it anyway, and I just can’t ask that.)

But I took today as an opportunity to hit the reset button. Meeting with the doc, we went over some plans, with no real dates set until I get the surgery sorted…

…which will be discussed next week when I meet with my surgeon. I’d emailed him last night with some thoughts, and he appears to have bought into some of them, ’cause I got a fresh 10-day supply of the same antibiotics I had a couple weeks ago. (Note here: his staff is also awesome.)

And my oncologist thought I’d put some good logic into my ideas, and also that he’d be talking with the surgeon and will also help with finding a quality in-network surgeon to consult if the surgeon wants a second.

We’re going to move forward. I’m determined. I’m not exactly ready to get sliced open again, but who is, really? It’s the path forward, though, so we do what we have to do to get there. I’m also not ready for 6 more rounds of chemo after, but that’s what it’s going to take and that’s what I’m going to do.

I also got to use (and, alas, explain the source of) one of my favorite movie lines, from the hilarious “Yellowbeard”: “You’ll have to kill me before I die!” The doc liked that.

Oh, and while I was changing the colostomy bag this morning, I pooped out a little wombat nugget while I had the bag off. Sorry about the bathroom rug, Kim, but at least it was the one that didn’t get washed over the weekend. I tried to get over the toilet before it fell loose, but it was just too quick for me.

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Denied.

Title says it all: my insurance carrier denied the request for an exception to MD Anderson being out of network for their facilities charge, which would have applied on top of the (already approved by my medical insurance administrator, and no, I don’t have time to explain how all this works right now) doctor’s billing for a 2nd-opinion consult.

The insurance company rep called me about 2:30 pm and spent 10 minutes talking around the answer until I pressed him on it. If I hadn’t, I dare say he’d STILL be talking around it. Then a “2-3 minute” hold that was 10 minutes and then another 10 minutes of him talking around the idea of them “helping” me get a referral to a surgeon that was in-network (I already have one, of course), all the while telling me repeatedly that he appreciated my time (while he was wasting it). Given that it’s taken the better part of a month to get to this point, I suggested that instead I’d call my surgeon’s office and get that sort of thing handled in 5 minutes.

Which I did.

Later in the afternoon, the person from MDA’s Financial Clearance Center called to tell me they’d also received the denial. Me: “Well, I guess we’re done here, then, right?” Yes, we were. She was very sorry. Of course, that doesn’t solve the problem, but whatever.

This all happened after I took the truck to the body shop to get the molding finally installed and also the door switch fixed. Except that they didn’t order the right part for the door switch even though I told them they were ordering the wrong part and the part they ordered had nothing to do with the dome light switching.

I was correct.

While they were in there replacing the door lock actuator (a working Ford part) with an AutoZone replacement, and having no impact whatsoever on the dome light operation, as I predicted, they also tweaked the speaker connections that have been intermittent in that door since the repair, and ALSO managed to dislodge one of the rubber window channels so that when I tried to lower the window a few miles away to push the outside mirror back into the right position (they’d pivoted out of its running position), the door glass went down very slowly about 3″ and then stopped, and wouldn’t go up, so I turned around (I was on my way to the office) and went back to the shop and begged them not to break anything else while fixing the stuff they’d already broken.

Much discussion ensued about the door switch, with their body parts system not showing it as a separate item. Ford only ships it as part of the latch assembly, but you can find the switch in the aftermarket. Which I did, on my phone, while he was telling me it didn’t exist.

Tech argues with me about pulling the latch (“I’m not getting paid for this.” “This is a comeback 20 minutes after a comeback. You’re not getting paid anyway. And you’ve already cost me 2 billable hours and counting that’s lost revenue to me that you’re not paying for, either”), but pulled it and brought it to the lobby to show me how the switch was integral to the latch. Upon which I took the assembly, twisted the switch 90 degrees, and removed it. “You were saying?”

They were unable to get the switch right then, so I have to make yet another fucking trip to their shop on Wednesday (can’t go tomorrow, I’m booked up). They gave me the keys back and I get in the truck and the trim piece that covers the side mirror area of the door has been tossed into the back seat and the clearance lamp in the door panel is sitting in the console cupholder, so I had to finish their job for them. Walked back in to tell the estimator that I was officially sick of being half-assed. We’re now into Month 3 of this and the truck still isn’t done.

Then I drove to the office and got the call from the insurance just as I was turning the truck off, so I stayed in the truck as the clocked ticked on more non-billable time while Jay from Community Health Choice wasted a half-hour of my life to tell me something that would’ve taken all of 30 seconds, and even then only after I had to keep interrupting him until he gave me a fucking answer.

Total: 3.5 billable hours lost. Stayed an hour later to make up one of them, will try to make up the rest later in the week.

Tomorrow morning, I go down to Kelsey-Seybold main campus for labs and what was supposed to be a mid-run-of-chemo status check with my oncologist, but is now going to be a contingency planning session (“If A, then B. If C, then D”, etc.).

And I’ve sent a message to my surgeon to start the planning for how we’re going to get moving again after wasting an entire month waiting for this MDA thing — except now, the consulting surgeon I met at the beginning of the month is no longer available as tomorrow is his last day of work and he retires effective Wednesday.

So, yeah, I spent most of the day getting dicked around. Anger keeps me warm, at least.

Tuesday and a Colostomy FAQ

Today was Tuesday. Nothing of note happened today.

And because there have been queries about how my colostomy works, I thought I’d post a descriptor.

First, the stoma. That’s the bit of my colon (descending colon in my case) that is sewn to the abdominal fascia and pokes through an opening in said fascia and skin. It has a hole in it that poop comes out of. Most stomas are roughly round. Not mine. Because my bowel was so distended at the time (recall that I was literally full of shit to the point of nearly rupturing my bowel, which would have been Very Bad Indeed), my surgeon did what he could, and my stoma is thus about 41mm top to bottom and roughly 26mm side to side. Poop comes out the outboard side.

My stoma is located about 4 inches to my left of my navel.

What I have covering it is a Coloplast Sensura Mio 1-Piece Drainable Pouch. I cut the hole to about 43mm round with the provided scissors that have a dull knob on the part that might possibly cut the bag. I’m likely going to experiment with a more elliptical 43×27 opening at some point to see if that improves seal integrity.

After removing a bag, I clean the area thoroughly, using alcohol wipes and sometimes adhesive remover, then treat where the bag goes with a skin barrier that theoretically keeps the adhesive stuff from direct contact with my skin (it helps, but it’s not perfect).

I’ve also been using Coloplast Paste as an additional barrier, because my body moves quite a bit when the bowel contracts and it can sometimes move enough to make a fold that separates from the pouch’s adhesive… blowout. The paste is designed to fill in those valleys and void areas. It mostly works okay.

And, because of my weird abdominal topography since the stoma was created (there’s an asymmetric bulge), I also use Brava Elastic Barrier Strips to expand the contact area of the barrier. I may switch to the XL version soon, for a bit more area, but until I get the various other holes sorted, I really don’t have room for the larger ones.

And when I leave the house, I have a bag with all of those things, plus a small mirror and disposal bags for the, um, soiled pouches. Because there are days like yesterday when I have a blowout away from home.

So, there’s no hose, no tubing, just a bit of my colon sticking out of a hole in my skin that has a bag stuck over it to collect the discharge. The bag has a vent to allow gas to escape (it’s a simple rubber-disk one-way check valve) and prevent ballooning. It’s drainable, and I wipe it out (especially the area where the drain seals by folding over on itself twice) with toilet paper, rinse it out with a little squirt bottle of water, and add some deodorizing drops (anyone who’s used a chemical toilet or port-a-potty will be familiar with the blue color) before sealing it back up.

Also, there’s no sphincter in the stoma, so I have no conscious control over what it does and when it does it. The bowel does its autonomous peristaltic pump stuff and poop comes out. Some is coming out as I type this, in fact. And it kinda hurts, which means, yeah, it’s a solid one. And so I’m going to end this and go empty the thing in the hopes I can get this poop out before it breaches the barrier for the 2nd day in a row.

ETA, post-clean-out:

So, yeah, glad I did that, because there was enough poop that it would have easily filled the bag and then breached the barrier had I not noticed quickly and gotten to the toilet and let the stuff just run out. These things happen when I finish an antibiotics course, as I just did yesterday.

About bag longevity: the manufacturers rather amusingly say you can get 7-9 days out of a drainable bag like the ones I use. Ha. Ha, I say. As does just about everyone else using them. Really 4 days is pretty normal, and 5 is phenomenal. My record is 6 days, set just last week (antibiotic assisted).

And yes, I really, really want to get rid of this thing as soon as I can. It really cramps my style (can’t tuck in my shirt) and desire to travel (might spray shit everywhere at any moment).

Monday. It was.

Okay, I’ll get this out of the way first: I had a bag blowout at the office just after lunchtime today. Of course, it was a bag that I’d just put on yesterday. Big poop and it just pushed out and…

Amazingly, I didn’t get any shit on my clothing, just a dollop on my left shoe while trying to clean up after I’d retreated to the shop bathroom – the one that’s a one-holer, with a locking door, but inexplicably no mirror.

Tried to see if I could patch things up long enough to get through the afternoon and get home… but no, so deployed backup from the emergency kit, which is holding so far.

Took the opportunity when I got home to organize my supplies and get them out of the “window bench” in the dining room (don’t ask) and decided to switch to the Coloplast travel kit bag that I’ve been using in the bathroom. So now I’ll just have the one kit and take it with me or have it in the bathroom here at the house, as warranted by my location. Bonus: there’s a little mirror with a magnet on the back.

So for those of you looking for a poop post, there ya go.

Meanwhile, I got a call from MD Anderson Financial Clearance Center that they’re still working on my case, trying to get some sort of “individual waiver”, and then got a message from Kim that they’d called her for some reason, and that the insurer says that the referring doctor needs to make the facility request of them.

And thus did I call the surgeon’s office and explain this to the confused admin nurse, who’s never had to do that before. I did get a message back from her that she’d spoken to the insurer and gotten the form faxed* over, and my surgeon will sign it and she’ll fax it back to the insurer tomorrow morning, and the insurer says 24 to 72 hours for a response once they get it.

Over the weekend, I’d done some checking and my insurance plan covers exactly bupkis for out of network hospitalization. And, in fact, MD Anderson does not have a contract covering any insurer’s individual market plans available here in Harris County, Texas. If I lived in Dallas, there’s apparently one individual plan that MDA accepts. But I don’t. And that plan doesn’t cover the rest of my medical team here, anyway.

But apparently, there’s this individual waiver thing that can sometimes happen. I suspect they’ll agree for the consult, but getting approval to get surgery at MDA is not something I’m going to hold my breath waiting for. And MDA’s policy for uninsured is cash up front based on their estimate of what your bill would be. So that’s somewhere in the vicinity of $65k-$100k for what I’m dealing with. Which, naturally, I don’t have handy.

BUT… there are alternatives to MDA. My cancer itself is bog-standard and responded well to bog-standard, well-established chemotherapy protocol. It’s this pesky secondary infection issue that’s the problem, and I don’t necessarily need MDA’s level of magic, just someone (in network) willing to take the shot. Maybe that’s my existing surgeon. I’ve been thinking of ways we could minimize the inflammation situation prior to surgery and need to run it past him to see what he thinks.

So we’ll see. It’s still a lot of waiting. Meanwhile, I’m getting work done when I’m not blowing out colostomy bags. So there’s that, I suppose.

*Yes. Faxed. 1988 called and they want their technology back. Supposedly it’s because of HIPAA, but I have trouble believing that an unsecured modem-based system is more secure than encrypted emails and secured PDFs would be. And… there’s every chance that the “fax” is both sent by, and received by, a computer, not a “fax machine” as we know them. I had to send something to the Texas Workforce Commission last year and they’d only accept a fax… to a number that was not even in the same area code (Austin) as the person I was talking with (Dallas). I had to dig out a phone cable and string our all-in-one to it, configure its fax settings in a deep-down menu, and send the information they requested to this number in Austin, where it was received by a computer and some poor schlub had to sift through them by case number and forward them (no doubt via email) to the responsible case manager.

Okay, so only *half* approved.

Well, that was interesting.

After getting a call on Wednesday from a patient advocate at MD Anderson, who just needed my emergency contact info, I was told I’d been getting a call to schedule my consult.

About 4:25pm on Friday, I got a call… from MDA’s “Financial Clearance Center”. They were looking for the referral. Which the MDA patient care advocate had. I pointed out that they had it, then immediately called my surgeon at Kelsey-Seybold and confirmed with his scheduling nurse that not only had she sent it over, she’d gotten confirmation from the MDA patient care advocate that he’d received it.

A bit after 5pm, I got a call back from MDA’s Financial Clearance Center. Seems I only have half of the referral approval needed. K-S has approved my referral to the MDA doctor, but my insurance company has to approve the referral to the MDA facility.

So I need insurance approval to use MDA’s front door, elevator, and a chair in the doctor’s office. I have to pay out of pocket for parking, of course (the Texas Medical Center is full of pay garages because of course the thing that patients and people visiting patients in the various hospitals need to do is pay more money out when they’re spending thousands of dollars on whatever health care they’re getting). This is because MDA is a specialty hospital and I have an HMO with restrictions on where I can get covered service. Even just to use an elevator and a chair.

Of course, MDA’s Financial Clearance Center waited until the end of business on Friday to start on this process, ensuring that nothing will be done until at least Monday (“We’re working the weekend.” “Well, no one else is, so you may as well go home, too.”). “We’re working to help you.” “By throwing up a wall of red tape in front of me? How is that helping me?”

I need to review what out-of-network hospitalization would cost me, as MDA is out of network [ETA: The answer is it would cost me tens of thousands of dollars because I have no coverage out of network for hospitalization/in-patient surgery. As always, there *may* be exceptions, but let’s be real here: probably not]. This will likely dictate whether or not I have surgery there or at a covered hospital. Especially since they’re going to have to go through this double-approval thing for every single thing MDA does.

So, yeah, I have an HMO. I’d rather have a PPO, but of course there weren’t any available on the individual market, so I got the best HMO I could that covered my doctors. As it happens, that’s a Kelsey-Seybold-administered plan that is really good in the K-S network, but doesn’t do a lot outside of that network. It was still the best I could get. Don’t try to criticize my choice here (there wasn’t much of one, and I chose the best one I could get, even though the premiums are higher than a lesser plan), or get blocked. I don’t have time or energy for that sort of shit.

And now I wait some more. I’ve got another day and a half of antibiotics to take, and then I’m just waiting.

Approved. Now to schedule.

My office visit with the MD Anderson surgeon has been approved by my insurance.

A query has been made of my surgeon’s office about scheduling said visit.

In the meantime, I worked. Got some good stuff done while I’m feeling well enough to do it.

And now you know, too.

I didn’t sweat-soak the bed last night.

Yeah, so I went to bed at a decent hour on Thursday night, still having alternate chills/sweats, but at the time sorta feeling okay-ish.

Woke up sometime after 4am completely drenched, stewing in my own juices, as it were. I’d sweat so much I could’ve wrung out my T-shirt and boxers and gotten measurable water volume, soaked the towels I keep over the fitted sheet (because of colostomy and other various holes and the way the nerves have impacted my bladder responses mechanism) and the towel I keep on my pillow (sweats during chemo and previous infection eruptions, never stopped using it), and the sheets, and the pillowcase, and the pillow.

Got up, peeled off the wet clothes, dried myself off (I was no longer actively sweating at this stage), got dry clothes, removed the towels, replaced with more towels, and then went back to sleep after a bit.

Slept until 9am. Which sounds great until you wake up then and know you have an hour to get ready (my wound prep routine is easily 25 minutes by itself) so you can drive the 30 miles to your surgeon’s office for an 11:30 appointment.

We made it. Turns out, they were running a bit late, which made the change from the original 11:45 appointment kinda silly, but there you go.

Surgeon looked at holes, repacked and redressed them, and wrote me a scrip for 10 days of Metronidazole (500mg 3 times a day) and Levofloxacin (750mg once daily), and we discussed the review he had with the other surgeon (the retiring one) of my latest CT images and they share a conclusion that they could open me up and it could be okay or it could be “a complete nightmare” (his words).

And so they’ve put in for the MD Anderson consult, and my surgeon made it pretty clear that he’s really not wanting to open me up again, even though he knows it has to be done. I honestly think he thinks he’s failed me somehow, but he couldn’t have predicted what’s happened to me after the surgery and chemo and he couldn’t know what exactly he was facing until he got in there and he did what was necessary at that time.

The retiring surgeon said he’d help with the surgery if it happened before the end of the month, but that may not be the case. My surgeon is somewhat unsettled at the prospect that the MDA surgeon might just kick it back to him with a recommendation or two.

So the doctors’ plan as I understand it right now is that I’d get opened up, they’d clean out all the infection, install drains to route it out of me, maybe revise my colostomy into something more regularly shaped now that my colon isn’t distended to the point of nearly rupturing as it was during the first surgery, close me back up, and send me back to chemo as soon as the incisions heal sufficiently. And maybe, if things look okay once they get in there, they might be able to resect my colon and get the primary mass of my sigmoid colon out, and (this is me dreaming here, to be honest), with the resection complete, I could lose the colostomy entirely and put the poop out my original-equipment exhaust tailpipe, well away from the incisions and not dependent upon adhesives to keep the shit from going everywhere we don’t want it to go.

A man can dream, right? Even under these circumstances?

I’d like the MDA surgeon to be willing to commit to at least trying for that last part. Hell, I’d like any of this cadre to be willing to commit to at least trying for that last part.

But let’s be honest here: probably ain’t gonna happen that way. My abdomen is likely a very hot (i.e. infection-ridden, inflamed) mess right now, and that’s going to limit what a surgeon feels safe doing.

And so there’s a whole basket full of “maybes” going on here.

As an engineer, eliminating the root cause of a problem is the key to preventing its recurrence, so getting rid of that self-perforated primary mass of colon cancer would solve the infection problem by removing its source. The clean-up-and-install-drains thing is a partial solution to the immediate situation but doesn’t actually solve the problem.

And now that I’m rather acutely aware of the pain and suffering involved in getting my abdomen unzipped from pubic bone to top-of-navel, I’d really like it to be worth all of that.

But… in the meantime, antibiotics from hell. I’m already starting to see some results in both goop output (less volume) and temperature stability. So there’s that, at least, for now. Got 8 more days of them.

And I didn’t sweat-soak the (freshly-washed-everything) bed last night, so I’ve got that going for me, I guess.