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.

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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.

I am not at work today.

So, we all know I’ve got these abscesses/sermoa/fistulas in my abdomen, right? Yeah, so one of them had its opening to the outside world close up a few days ago, which proved to be a problem as its cavity filled up with goop that had nowhere to go. I was able to get it open again (without the use of cutting implements) the night before last, which is good, if very very messy. All three of the holes have been making serious volume lately.

I went to work yesterday, and just before 4pm, I started shivering uncontrollably. Granted, there’s some weird “meat locker” setup for the AC in our bullpen of desks, but this was way beyond that. Went out back to the shop where there’s no AC, and even went out into the hot sun to let it soak into my dark-colored clothes to warm up — and I got the shivers under control in about an hour, but was still feeling cold.

About 5 minutes into my drive home, with the AC in the truck dealing with no air movement in traffic and local ambient temps at the condenser of about 105F, I started sweating.

This would set a pattern that’s continued into today – at some point during the night, I was so chilled that, while not shivering, I just couldn’t get warm, and had the heavy comforter and the bed heater going. By the morning, I was sweating again.

Last night, sent email to surgeon about this and the sitrep on the holes. This morning, after some difficulty reaching me (I can call them. Other people can call me. No problem. When they call me, it rings once and goes to a busy signal for some reason, and my phone never rings), I have an appointment tomorrow morning to see him. I suspect I’ll get a script for antibiotics again.

Did I mention that the surgeon is pretty well convinced the only things keeping me from going into sepsis are these three draining holes and the diversion of fecal matter that the colostomy is performing? Yeah, I’m wanting to get that fixed sooner rather than later.

To that end, we’re waiting on insurance approval of a referral to a colorectal surgeon at MD Anderson. I read his bio and qualifications once I got his name and he’s the Director of this and the Chair of that and the Professor of this other thing, so I’ve got a good feeling about meeting him. Plus MD Anderson as an institution seems to get its jollies from tackling oddball cases like what mine is turning into. Hell, he may even be able to get the main mass (and source of the leakage causing the infection issues) out.

As I write this, I’m neither shivering nor sweating, but I’m coming off a sweat cycle. I just couldn’t justify the damage to myself driving into the office and working there today with all this going on – I wouldn’t be productive, anyway.

And I’m learning that the office chair I have there causes me endless back grief in my current state, being limited in what I can do to alter my position in said chair.

And so I’m home today. I’ve replaced my dressings. I’ve eaten a food. I’m just waiting for the next temperature cycle. I’m due to feel chilled next.

I hate this. I really really want to get this stuff fixed so I don’t go into sepsis.  I hate the idea of thinking I’ve got a timebomb waiting to go off inside of me. But all I can do right now is replace dressings and wait.

New Week, New Doc

So we got up early and went to the Medical Center area to consult with the very experienced GI surgeon my surgeon referred me to.

First thing we noticed: a sign posted in the waiting room that he’s retiring at the end of July.

He’s a nice man, clearly knows what he’s talking about, and gave me an anal probe because I guess he wanted to get to know me. So that happened.

He also, after talking with my surgeon and reading my medical file, was surprised (and said so) that I “look, talk, and move” as well as I do because he was expecting someone with my level of involvement to be in much rougher shape, I guess.

So, maybe I’m supposed to be dead and I just didn’t get the memo? Nah.

He shares my concern that opening me up and NOT getting the main mass as the source of the infection material is not terribly useful, but he also said there’s really not a way to tell if that’s possible without going in there to look, so, same situation.

He did suggest that I get a referral over to MD Anderson (for those of you not familiar, MD Anderson is pretty much *THE* cancer treatment and research hospital for this part of the world, by which I mean pretty much everything south of the Missouri and Ohio Rivers and east of the Rockies), though he thought they might balk because I’m Stage IV.

Which seems kinda funny to me because MD Anderson’s whole shtick is curing the incurable. So I’d think my case would involve some MD Anderson doctor saying “BRING IT, MOTHERFUCKERS! WE’RE GONNA KILL THIS SHIT DEAD!” Or words to that effect, but more professional.

But this might be my way to get insurance approval to go to MD Anderson. Today’s doctor thinks they might want to do their own CT imaging (yay, more time in the spinny X-ray donut), and we talked about PET and MRI scans. The doc said that for what I’ve got going on, a CT with both oral and IV contrast is preferable to seeing what’s going on and getting a rough idea of the mass size and proximity and impingement on other systems. And they can see inflammation, to some extent. And since inflammation is what might keep them from removing the mass, well, that’s something to look at.

BUT… both docs think it’s important to open up and flush out all this crud and install drains so that we can minimize the risk of going septic, but today’s doc said the right things about removing the mass as source of said problem being the far more preferable option.

He did not say bupkis about my colostomy. Tap-dancing away from THAT subject…

…well, he did say one thing, in response to my comment that its unreliability is keeping me from really living, and that I’m not able to eat stuff I like because of it. “Like what?” “Well, to name one thing, I really miss Dr Pepper.” “So drink one. It’ll just make a little gas, and you can vent that” “But they told me the carbonation will blow the bag, and I’ve had enough trouble without doing that…” He seem genuinely perplexed that I’d been told to avoid certain foods and carbonated beverages. Funny, that. Not that I’m going to try it anytime soon.

So we came on home, and I went to work, and it was otherwise just another day in which I can’t feel my toes very well, nor my fingers (PN, still). But I got some useful work done anyway. And I’ll do it again tomorrow, while expecting calls from my surgeon’s office about MD Anderson and also from Allstate about the rental car charges.

Life, in other words, goes on as it deems fit. Still a lot of unknowns for me.

And then it was Friday

Well, let’s see… started the morning with puppies needing attention as Kim’s in Utah, and then blew the bag seal on Wednesday’s bag, so got to do another bag change. At least it happened while I was emptying it (long story short: I was trying to move some poop from the top to the exit of the bag and the part of the seal that is always in a compromised area and, well, poop.

So I also changed out the abscess dressings (per the surgeon yesterday, I’m not packing the two tiny Hellmouth remnant openings anymore, because his wonderful PA couldn’t really get any packing into them and what she tried hurt (me) like hell. And sure enough, she hadn’t really gotten anything into either one of them. So it’s just the original seroma opening, which dates to MARCH 9TH!), and got myself ready for the day. Yay.

My truck, which has needed “just an hour’s worth of clean-up” for the last 3 days, hadn’t yet received it when I went to collect it this morning, plus my guy there was out this morning tending to a family medical issue (which I completely understand), so it got left there. It’s now all set for me to pick up tomorrow morning.

So I went on to work, and did work things. Resisted the temptation to leave work and get truck when my guy there called, as that would’ve stopped the billable hours clock.

Also got a call from the surgeon’s office and they’ve got me a referral and appointment with the other surgeon for 9am on Monday. In the Medical Center. Which means leaving the house before 7am because Houston traffic and a parking garage and an elevator to the 23rd floor.

But I’ve got Questions. I’m trying to get something more than a “maybe” on this.

Oh, I’ll end up going through with it. Because really, I’m not done yet. And that’s about it.

Got some dinner on the way home, fed the pups, who aren’t camped out at the door tonight looking for Kim, but instead are really needy for attention from me.

So, yay, tomorrow, truck. Maybe. Not counting my truck before it hatches. Or something.

And I’ll have to figure out the situation with the rental. That’s an ongoing story. Yes, I’ve gotten legal advice already, so I don’t need to hear suggestions again. Suffice to say, stuff is happening.

The Suckage Increases Markedly

Today, had a visit with the surgeon, the first since last week’s CT scan. What I knew already is that the 2 abscesses and the seroma aren’t really healing very well at all.

What I didn’t quite grok is why.

Surgeon went to the trouble of consulting with a second GI surgeon about my case (and I’m getting an appointment scheduled with said second GI surgeon, as this will be a tag-team effort now), and the consensus is that my primary cancer has “self-perforated” and thus some small amount of fecal bacteria is getting into my abdominal cavity, and these abscesses/seroma are the result of that.

There’s one small positive in this: the combination of the colostomy diverting the poop and preventing almost all of it from getting to the cancerous part of my colon, and that the abscesses are open and draining, has kept me from going septic. It’s a low-level infection, basically.

But that’s about all the positives. Obviously, can’t restart chemo with this situation going on, which isn’t going to make the oncologist happy.

No, it means I’m likely going to have my abdomen unzipped again (has to be an open surgery) to clean out all the mess, install some drains, and, maybe, if the internal inflammation isn’t bad, do the resection and get the primary mass portion of the colon out.

Or, if the inflammation is too much, it stays.

But even if it goes, he thinks I’ll be keeping the colostomy for a while longer.

I hate the colostomy and want it gone. It traps me into staying close to home, not doing things that, for me, constitute “living” versus just existing. I can’t bend or twist very well. The seals to my skin, because of the way it’s shaped, have a tendency to blow out at random intervals (always in a way that sends poop toward one of my open wounds, of course), which means I could end up getting shit all over everywhere, wherever I happen to be, at any time.

The surgeon pointed out that the colostomy saved my life, in that without it, with the blockage I have, I would have ruptured my bowel and gone totally septic and suffered a lot and likely died.

Being in rather a foul mood at this point (spoiler alert: I’m in a bit better shape as I write this), I wondered aloud if maybe that would have been preferable to being reduced to just existing.

I understand what the colostomy did and does. That doesn’t mean I have to like it. It’s an obvious, noisy (random farts with no warning or control), smelly (don’t care how much of the deodorizing liquid I use, it stinks), messy, prone to random failures at inopportune times, piece of equipment that says I’m broken. I’m old. I’m broken, and the longer it’s there, the less likely (at least in my mind) that I’ll ever be rid of it.

I hate it. (Surgeon: “You need to have a love/hate relationship with it.” Me: “How about hate/hate?” Did I mention he has custom cowboy boots with a little pink colon applique on them?) I’m sitting here right now typing this between very frequent checks of the adhesive ring’s integrity as I’ve got some emissions coming out of the stoma and I’d like them to stay in the fucking bag, thankyouverymuch. I just put the damn thing on yesterday morning after a fairly epic blowout that happened while I was sitting here in my chair trying to take care of some business.

So I’m going to get an appointment with the other surgeon for a consult, and the likely outcome of that is I’m going to get another open abdominal surgery soon.

This means a week or so in the hospital.

This means who-knows-how-long for recovery (it’s been 6 months since my first surgery and I’m obviously not recovered from it).

This means a fairly lengthy delay to the next chemo.

This means another big bill.

And, at this point, we’re talking about a lot of heavy-duty suckage for what amounts to a “maybe” that in any event wouldn’t be a complete final surgery, and may well not be able to remove the source of the problem at all, which leads me to ask “why should I go through all that again if the outcome is the source of all the bad stuff is still there, plus my abdomen has been unzipped again and I have to go through all that recovery for no good reason?”

I don’t know what the answer is. I suspect what’ll happen is I’ll go through with it, and with history being my guide, the worst-case situation will be what happens, and I’ll be really pissed off about it, but hurt too much to do anything except wince in pain and cry.

Of course, there’s an advantage to getting it done this year: this year, at least, I still have health insurance. I don’t know if I’ll have health insurance next year thanks to the GOP asshats in DC and Austin who are doing their level best to at the very least price me out of the market, if not make it so I’m totally unable to get coverage for any amount of money. The irony is not lost on me that I’m an American, decently-educated, straight, white, male who can pass as Christian, who is one of the kind of “entrepreneurial small-business owner” types my GOP reps tout in their speeches, while their actions involve doing everything they can to make life outside of corporate employment too expensive to manage. If I, who by virtue of genetics and birth, get to go through life on the lowest difficulty setting, imagine being someone who has none of those inherent “low difficulty” characteristics.

But I digress. The summary: the situation just took a turn into the old abandoned mine road. And I’m not driving.

Monday happened. How did I do?

Well, let’s see…

  • First call was to my health insurer. Aside from McTavish yelping at precisely the right moments to screw up their voice prompt system (which had the surprise benefit of getting me to a human faster), this call went well. Nice person on other end assured me that they’d deal with the ambulance service (again) and I should just pay them the $65 copay I owe them (so they can’t say I’m a deadbeat). Which I did just after the call was over.
  • Emboldened by this success, I called the ostomy supplier. Local guy is just as appalled as I am, and, best of all, made zero excuses and outlined a plan to fix the problems. He called back in the afternoon to follow up with me after he met with his manager and their shipping coordinator to confirm what they’re going to do so that next month is right the first time and on time. So, while I’ll have to wait until next month to get that confirmed, I’m feeling good about this one.
  • And then I called the body shop. They have not gotten a call back from Allstate, but he was going to call again if he didn’t hear back before noon. I left a message with the Allstate adjuster to please call the body shop back. This is a solid incomplete at this point, as I lack any sort of feedback on any progress that was made today.
  • I did make it to the office at something resembling my regular time, so yay for billable hours.

And because it must be said, after dinner, I was sitting here on my comfy recliner when my colostomy bag (just installed on… Sunday? Yeah, Sunday) blew its seal to my skin, so I spent most of the 9pm hour in the bathroom changing both the bag and all three abscess packings and dressings (so much hand washing…). And then I put the scrub pants and the shirt that I was wearing into the washer on the Steam Sterilize cycle, because… wait for it… poop.

On the plus side, had a nice dinner out with Kim, and I’m still alive.