Monday’s to-do list

Because having cancer isn’t quite enough for my plate, here’s a few things I need to do tomorrow:

  • Call my health insurer to get instructions about the not-corrected invoice I received on Friday from the ambulance service who is trying to balance-bill me, something specifically prohibited in Texas (and which my insurer has formally notified them about).
  • Call the body shop to find out if they’ve gotten in touch with Allstate, who cut off my rental car payments on the 11th (without telling me), resulting in about $555 being charged to my credit card by Enterprise. Allstate maintains that the body shop, who is still trying to source some parts for my truck, has exceeded “industry standard repair duration” and thus I’m to be punished for it. Yes, I know about subrogation and I’ve talked to my attorney already, so you don’t have to remind me about it. Allstate, I’ll also remind everyone, is not my insurer but the insurer of the lady who pulled out from a side street onto a freeway access road, crossed 2 of the 3 lanes, and ran into the side of my truck as I was accelerating in the far left ramp lane to get onto the freeway.
    • Depending on the outcome of this call, I may also need to call Allstate and maybe also Enterprise. Because it’s my responsibility to do everyone else’s job for them, apparently.
    • On top of that, Allstate doesn’t apparently do “comparable vehicle”, just “replacement transportation”, and thus my selection of a not-nearly-like-my-truck Toyota RAV4 instead of the tiny hair-shirt Nissan Versa means I’m on the hook for the rental rate difference between a car I can’t really fit into properly and one that I can (and forget anything comparable to the 1-ton pickup that is my vehicle. Imagine if you were a business who used your truck as a vital tool in your work. Can you imagine trying to haul that load of tools or lumber or plumbing parts or whatever in a Nissan Versa? So that’s something else I need to sort out, too.
    • Yes, I know they’re in the business to keep as much of their money as possible, but hey, as I pointed out on Friday to one of their reps, if their insured hadn’t somehow missed seeing a 20 foot long, 6-1/2 foot high, 7200 lb, painted in a contrasting color to its background pickup truck on a cloudless noontime day, we wouldn’t have to be having any of these discussions in the first place. They took the risk insuring her, so they’re on the hook to make me whole again.
    • Oh, and the body shop apparently used the hard tonneau cover on my truck bed as a shelf and, while the paint was kinda toasted before, it certainly didn’t have any big, contrasting-color scratches from parts being dragged across it before it went into the shop, so I’m kinda insistent that they fix that. (I did not pay the well-over-$3k price to prep and paint the rest of the truck because I’ve got cancer and I’m not working full-time and thus can’t afford it.) And they put a 6.0L badge on the new-used passenger front door instead of the 7.3L badge it’s supposed to have, because they broke the 7.3L badge removing it from the old door. So that has to get fixed, too. I’ll accept the later-model-style running boards because my style aren’t available anymore, but no, not a mismatched and incorrect badge. And they’re still short some moldings because Ford has the front door, but not the rear door or rear cab C-pillar moldings anymore for my year. May have to get moldings for a later year. For both sides. To go along with the top rear cab corner molding they broke when they removed it for paint prep.
  • Call the ostomy supply outfit to make sure they’ve gotten all my emails from this weekend and we now have our ducks in a row and they’ll send me the right stuff, all at once in one box, on the promised day, next month. Instead of a box of some wrong things, a box of some right things, and a box of some more wrong things that are at least usable wrong things but they’re transparent instead of covered and do you like to look at your own poop all the time? I don’t, which is why I ordered the covered pouches, but they ordered (and their supply house shipped) the transparent pouches. But at least they’re the right model otherwise. Oh, and send me the correct return authorization for the wrong stuff they sent me. And maybe, just maybe, I’ll finally discover the reason why a box of ten colostomy pouches comes with only five disposal bags. According to the manufacturer, this is something that’s done by the distributor, but this is two separate distributors doing the same thing, so I’m going to have to dive into that further in my copious free time. My hunch is I’ll figure it out around the time I get the ostomy closed up and don’t need those products anymore.
  • Maybe, if I’m lucky, I’ll get in to the office for some billable hours.

I’m just really, really tired of having to deal with a level of incompetence that, if I were to display it in my work, would get me fired and largely insure that I might as well open up a T-shirt shop on Duval Street in Key West, ’cause I wouldn’t be working in my profession again. (I don’t want to move to Key West. It’s too close to sea level. I’m about 70 miles inland at 125 feet above msl right now and outside of the 0.01% flood plain, and that’s as low as I’m willing to go.)

Ordinarily, I’d welcome the opportunity to wear down a major insurance company until they paid up as I wanted, but with chemo on the horizon again, I’m having to learn to delegate, so yeah, I may well have to get my auto insurer involved.

Oh, well, I should go to bed. I have a busy day planned for tomorrow.

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Medical Follies

I have a CT scan scheduled tomorrow to check on the status of my abscesses prior to a decision on when to restart chemo.

Got the call to schedule it on Saturday. Normally, I get an email from the clinic confirming it before the phone call is even over, but I didn’t get one this time.

Monday about 5:26pm, I get a phone call from someone in the radiology department indicating that I need some bloodwork done before the CT scan because my chart still says I’m hypertensive even though I haven’t had high blood pressure since the surgery and if I take the HBP meds, I pass out from low blood pressure and expensively go to the hospital again. So… surprise?

Yesterday morning, I went to the nearest clinic lab to get the blood work… but there were no orders in the system for it. Receptionist made some calls, determined that I didn’t need any bloodwork, and I went on my way.

Sent an email to my surgeon to confirm that a) I indeed really do have a CT scan for Thursday, and b) what’s the deal with the bloodwork.

Got a call from the surgeon’s staff about 2 this afternoon that indeed I do need to get bloodwork done, and she’d just put the orders in, and so I left the office about 3 and went back to the nearest clinic lab and got the draw, losing a couple of billable hours in the process. They were apologetic but not enough so to write me a check for the lost work hours.

And before I could leave, got another call, this one from the radiology tech, confirming that I do have the appointment tomorrow and I do need to get the bloodwork, because one call wasn’t enough, apparently. She couldn’t cut me a check, either.

Sigh.

Oh, and the new colostomy supplier? Yeah, their distribution center sent me a partial shipment yesterday, which shorted me on one item, substituted a different type of one item for one that’s a) not useful and b) not covered by my insurance, and substituted different brands for 3 other items. And no ostomy bags, which are being delayed another week or so because 1st order or some such bullshit. Called my rep, who had made the fatal mistake of giving me his cell phone number, and he’s on the case as of today getting it fixed. So I’m now 0 for 6 on getting ostomy supply orders correct and on time. Told rep I’m having Edgepark flashbacks, and that shouldn’t be the case. He was pissed that this happened, so that’s good as far as I’m concerned.

What I would like to have is an electronic means of communicating this stuff in “writing” rather than relying on verbal readouts over the phone, but that’s still to come, I guess.

Meanwhile, at least I have enough stuff on hand to deal with normal changes. If I have a couple of 5-bag days, I’m in trouble, so let’s hope that doesn’t happen.

(I also learned from the bag supplier that they don’t package disposal bags in the ostomy pouch boxes – the distributor basically opens the box, throws in disposal bags, and closes the box again for shipment. Which explains why Edgepark consistently sent 5 disposal bags in each box of 10 pouches, because as we’ve already established, their warehouse staff can’t count or read. The bag supplier is sending me 30 disposal bags gratis. And maybe they’ll start packaging the disposal bags with the pouches themselves.)

Oh, hey, look, a poop post.

Just got done with an unplanned bag change. It seemed to be a small leak that I could clean up and patch with Brava strip material but then I got to looking a little closer and nope, had to replace the bag. Which had gone on Tuesday night, so this is only a 2-dayer. Sigh. At least I’ve got a decent supply of materials in house. New ostomy supplies er, um, supplier is set to ship their first shipment tomorrow, so we’ll see how this goes. Had a call Tuesday from one of their reps who wanted me to give her all the information I’d already provided to Dave, the other rep, but of course I was still in the surgeon’s office at the time she called and I didn’t have any of that with me. Dave called on Wednesday to assure me all was well, sorry about that. Good, because I was having Edgepark flashbacks.

Speaking of the surgeon, he really should leave the packing and bandaging to his PA, who’s much better at it than he is.  Heh. Naw, he did alright, but he did put about twice as much packing into my seroma (the one that started this whole mess) than I’d been using for the last month or so, and that irritated it enough to make it produce not only blood (as it’s been doing, and I’m assured that’s a healthy sign – good, red, fresh blood) but also goop. It’s getting a bit better, but I’ve had the gauze bandaging get saturated and the Tegaderm get so full that it breaches (a little), which is always fun. (No, it’s not.)

I go back to see him at the end of the month so we can determine whether I’ll be doing chemo on July 3 as currently scheduled, or if we’re going to have to push it back a bit more. Surgeon really wants this stuff healed up before my healing powers get zapped again, saying “we don’t want sepsis!”. No, we don’t. Sepsis is bad.

On the good news front, my brother’s friend Gail just finished up Round 12 of her chemo, which means she gets to ring the bell. There will of course be scans and other unpleasant-to-do-but-should-produce-a-better-life procedures to come for her, I’m speculating, because that’s what I figure I’ll have after #12, too. I don’t think she’s got the torso full of mets like I do, but hey, some of the smaller ones got zapped by the first 6, and the big ones shrunk, so maybe, just maybe, I’ll get lucky and 7-12 will finish them off. Oncologist is still concerned about the liver mets, which is understandable, but that’s the one that was shrunk almost in half by the first 6 rounds. Go Gail!!!!!! (and yeah, Dave totally put us in touch with each other because colon cancer. Always good to have more folks on the team, even if the reason sucks.)

I wound up not going to the office today despite my best laid plans to do so, because I got up this morning and quickly developed major muscle soreness in my low and mid back and abdomen from sitting upright to fetch Kim from the car dealer after she dropped her car off to finally complete the airbag recall with the passenger side (parts finally available), and the office is all sitting upright, so I wound up electing to not put myself into heavy pain (which makes it hard to focus on work anyway) and enjoy the recliner. It helped, and I should be back at it tomorrow. Gotta get a few more billable hours in this week (and get some design tweaks sorted).

And I haven’t heard anything about the truck being done yet, so I’m still driving the rental. Oh, well.

And that’s the news from here.

I’ve survived the week. Hope you did, too.

I’m having kind of a down week, mentally and emotionally. It’s manifested in several ways, including physical fatigue, but mostly I’m just… down.

It’s a mix of internal and external stimuli.

Internally, I realized today that there’s a part of my brain which is desperately angry that I’ll be restarting chemo soon, because it sucked the first time, and I felt horrible for most of 3 months solid and there are still parts of me not right because of it (as he types this with fingers that tingle ALL THE DAMN TIME and looks at his feet that do the same from ball of feet to tip of toes). Just to make it more fun, this nervous system issue has been worse this week than it has in some time, or I’m thinking that it is, at least.

And there’s a larger, stronger, louder part of my brain that’s yelling at this part upset about the chemo that we’re fucking well going to do another 12 weeks – 6 infusions – of chemo, maybe even do another round after that, and certainly another surgery. It’s all going to suck out loud. It’s going to hurt. I’m going to have days when it’ll be a crowning glory of achievement to make it to the toilet without wetting myself (this is a challenge even today), where saying “zootlewurdle” will be just a bridge too far. I’ll be stuck in bed again for a while. My brain will be stuck in very thick, cold, pudding. And it’ll probably be that horrible tapioca that I loathe.

But we’re fucking well going to do this, because 3 months, 6 months, another year, another 2 years of this is going to give me another however many years I have left on this planet. Short term pain for long term gain.

And then there’s the external stimuli. The world, and certain parts of our country, are going to whatever your vision of hell is. We’ve got a guy in the White House who considers his ignorance to be a feature, not a bug, and he’s fucking proud of how little he prepares for things because his gut is smarter than the entire rest of the earth, and he’s already relegating us to bottom-tier status in the international community. And he and the knuckleheads in Congress have fucked around with the ACA enough that I’m wondering if I’ll be able to afford health insurance next year if it goes up the 40% that it just might. That worries me.

And then there’s the people who have gone to the dark place this week and didn’t see a way to get out of it. Kate Spade didn’t really affect me much, but Tony Bourdain has hit me hard. Never met the man. Can’t call him a friend. But I watched all his shows from “A Cook’s Tour” on Food Network to “Parts Unknown” on CNN and read “Kitchen Confidential” with barely disguised glee and just thought “Here’s someone I’d love to sit down to a meal with and just listen and respond to his questions.” He’d been open about his demons and he seemed to have them under control.

But the dark place claimed him anyway.

And I’m someone who really had never really gone to the dark place until I got diagnosed with Stage IV colon cancer. Then it paid me a visit. And it’s returned several other times, especially when I was otherwise at my lowest – the most pain, the least function, the plan had gone out the window… but…

…but I’m not staying there. I can’t leave that kind of wreckage behind. And more than anything else, I’m possessed of a strong-as-hell self-preservation instinct and I’m just not ready to be done yet. I’ve got a lot of miles left to put on the clock. And the only way I can do that is to fucking well keep going.

And I’m going to need my team to help me sometimes. I’m glad I have a team, starting with Kim and my family and my friends both near and far. They’re the backstop. You keep me going, and I hope I keep you going when you need it. That’s how this works: mutual support. We have our teams behind us. You may not realize you have one, but if you stop and think about it for a moment, I’m sure you’ll see that you do.

There’s a suicide help line out there for anyone who needs it. It’s 1-800-273-TALK(8255), or can be found on the web at https://suicidepreventionhotline.org. You may have to wait on hold. But that’s not a sign that you should quit. It’s a sign that you should keep living. Call a friend. Call me. Even if I’m asleep, on chemo brain, or generally in a bad place myself, I’ll get with you and sit on the phone with you until help can get to you in person. You’re worth it. I’m worth it.

Life isn’t easy. Even when you’re playing on the lowest difficulty setting (I’m a cis-het-white-male-American born into a middle-class family, with a college education in a always-able-to-find-a-gig profession, and very little in the way of debt. That’s about as much of an “easy button” as you’re likely to find. If I can find myself in the dark place, anyone can), life can throw you problems you’re not sure you can handle, and just bailing out seems like the right answer. It’s not. There’s help. Family. Friends. Your doctor. Your clergyperson if you’re religious. The folks on the other end of that toll-free number. You can get help to get through the problems. You have a team, same as I do.

I’ve seen the dark place, people. I’m sure there will be more times it pays me a visit while I continue to deal with this cancer shit. But I’m not gonna quit. I’m not gonna let the dark place claim me. And if I can do it – with the help of my team – so can you. I’m not special. I’m not brave.* I’m not possessed of a greater measure of courage than your average Joe. I’m just a human who isn’t done living yet and thus has a strong self-preservation instinct.

Keep going on the living thing. We’ll do it together, okay?

*And I’m kinda stupid sometimes when it comes to taking care of myself, hence the not-going-to-the-doctor-until-I-was-at-Stage-IV thing. Don’t emulate me in that regard. I’m a cautionary tale, not a role model.

Trying to catch up

In no particular order:

  • Met with the oncologist on June 1st. Pending approval from the surgeon on the abscesses healing, I’m scheduled to restart chemo on July 3rd. Which means I’ll spend the 4th attached to the pump and possibly be extra cranky. It’s also going to be the first July 4th in my memory that I don’t have the family tradition strawberry soda, because I can’t have anything carbonated thanks to the colostomy. But we don’t want to delay any more than we have to.

    On the plus side, we did also discuss the genomic testing and my questions about the apparent absence of useful info (I am not a female, so that particular mutation is unlikely to cause me problems, for instance), it told him I don’t have any of the mutations that would indicate a type of colon cancer that would be problematic. In basic terms, once this stuff is dead, it’s likely to stay that way. Which is good. We just got to kill it.

  • Speaking of the abscesses, Hellmouth 1 is nearly all healed up on the surface, but is still taking packing for the void behind. Hellmouth 2 is doing likewise, but is being extra bloody today, so that’s fun. The seroma that started the whole thing is also being extra bloody. I’m told that’s good, but I’ll see how things shake out on Tuesday the 12th when I go see the surgeon again for another post-op.
  • Truck’s still in the body shop, probably being painted tomorrow.
  • Been working as much as my endurance permits, which is about 5-6 hours a day at most.
  • I’ve had all sorts of fun with my body’s temperature regulation, especially at night. Had a couple of nights where I sweat through my clothes enough to require a change. Those are fun.
  • I also had a night this past Sunday where I went to bed at a reasonable time, woke up to go to the bathroom about 3 hours later, and then utterly could not go back to sleep. So I didn’t go to work on Monday.
  • Instead, since I was up, I did a bit of sleuthing and found out how to email the C-Suite occupants at Cardinal Health, parent company of Edgepark, the outfit whose only consistency has been their ability to screw SOMETHING up about my colostomy supply order every month. This time, I’d placed the online order on Saturday night and they informed me my insurance had been “terminated”. Um, no, it hadn’t been. So I wrote a polite but detailed email to the relevant corporate officers who, to my amazement, responded early Monday morning. I even had a phone conversation in the afternoon with the division president in charge of Edgepark… except by that time I’d learned from my insurer that they’d dropped Edgepark as an approved supplier and I’d already placed an order with a new approved supplier. I wish the insurer had told me about it, instead of finding out this way, but given that they’re the ones who foisted Edgepark on me in the first place, I guess I shouldn’t be surprised. The conversation with the division president was cordial but I really doubt they’re going to do anything about their persistent problems. And it’s not just me. 260+ complaints on their BBB page. 162 reviews, 159 of which are negative. And yet the BBB gives then an A+ rating because Edgepark has thrown a lot of money at them. Since I was awake, I read a lot of them. Amazingly consistent: billing problems, order delays – often of life-saving stuff like insulin pumps and prescription infant formula – a male colostomy patient who was shipped a breast pump for some reason, that sort of thing.

    But they’re now out of my life. I’ve paid the last co-pay (for May’s order), and we’re done.

    The new place is local, friendly to talk to, and I’ll find out next week if they deliver as promised.

  • On the Saturday of Memorial Day weekend, I surprised my SCCA pals by making an appearance at MSRH and even spending a little time in the Race Control chair. They got me back: a whole bunch of people donated the $50 gas cards volunteers get as “payment” for each day working, and I’m not really capable of expressing my thanks adequately, but I’m going to try.
  • And that’s really all the excitement. I’m enjoying a wee bit of somewhat “normal” living, except for the extra holes and the colostomy and the lack of stamina and the weird temperature regulation and the continuous tingly PN fingers and toes and the knowledge that I’ll be back on chemo soon and not feeling so great.

I just want my energy levels back. That ain’t happening anytime soon, but I’m trying to take care of myself. Kim is, of course, delightful and really going above and beyond looking after me. It’s been great to have her home for a couple weeks and just spending time with her.

Diversions: Body Shops & Rental Cars

Got up this morning, ate breakfast, declared myself thoroughly stinky, took a shower (this is a bit of a production these days, so has slipped a bit from being a daily occurrence), got dressed to go outside (yep: Adidas drawstring-waist warm-up pants, my go-outside uniform until the abscesses heal up), and took the truck over to the body shop to start repairs.

And thus began The Rental Car Adventure(?).

The person who hit me’s insurance, Allstate, prefers Enterprise to Hertz. There’s a Hertz on-site at the body shop, but of course if I wanted to use them, I’d have to pay for it myself and submit the bill to Allstate, whereas if I went with Enterprise (which has a location just up the street from the body shop), they’d direct-bill Allstate. As I’d rather not be out any cash on this deal, I was a good boy and said I’d go with Enterprise.

So the Enterprise guy picked me up at the body shop. And when I got to their location, I was to be put into a Nissan Versa, which is sort of the hair-shirt of automobiles. This despite the Allstate person assuring me I’d get a regular sized car instead of a tiny tin box. After some questions, I was told I’d get a Ford Escape instead (I’m okay with this), but it was at a different location and would I mind taking a ride? Sure, why not.

So we hopped into the Versa (it was indeed a hair-shirt and smelled of stale cigarette smoke besides) and off we went to a different location and I saw the Escape and then we went inside and I was given a Toyota RAV4.

It’s not bad, but it doesn’t have satellite radio. It’s got about 19k on the clock, and 3 Continental tires and one mystery brand tire. And the left rear seat has stains on it that looks like someone went wee in the seat, but I won’t be sitting there. I duly noted that stain and the more normal-looking stains on the driver’s seat bum in the pre-rental inspection, of course.

So they email me the rental agreement, and I noticed (too late to fix it tonight) that they think they’re getting the car back at 8am tomorrow. Um, no, given that the truck will likely be in the shop for a couple weeks… so message left and I’ll get that sorted tomorrow so they don’t report it stolen or something.

The rest of the day passed for what amounts to normal: I came home, ate a food, got a few billables in, and now I’m resting to recover from the day’s activity so I can sleep decently.

But I still wish the rental had sat radio. It’s got lane-departure warning (with steering assist if I want it), emergency braking, distance-following cruise control, automatic lights, but whoever at Enterprise that ordered it didn’t check the box for SiriusXM. Oh, well. I’ll suffer a bit… or go get the receiver out of the truck and use my spare car kit and the aux-in that the RAV4 does have. Heh.

Next: tomorrow.

About Accepting Help

I’m really, really, REALLY bad at accepting help. It’s just my nature to be the helper, not the helpee. It’s why I got involved as a Helper Monkey on the JoCo Cruise: I get so much out of the experience, I feel compelled to give back so others can have as much fun as I do. It’s why I’m an SCCA Flagging & Communications marshal: I have so much fun at the race track, and this is a prime way for me to be there, get a spectacular place to watch the races, and only occasionally have moments of stark terror if things go horribly wrong in my sector of track (see: 2013 Houston IndyCar race for the one with all the video online, including some of me running *toward* the crash as it was happening). In general, I’m at my happiest if my karmic scale is tilted firmly toward “giver” rather than “receiver”. It’s just how I’m wired.

So, today, Matt Blehm showed up at the house and gave me endless grief about my grabbing my work gloves (habit, Matt. Habit) as he dove into what amounted to one of those sliding tile puzzles where you have to do things in the right order to solve the puzzle. He hefted tires and wheels. He hooked up my trailer to his truck, emptied the throwaway stuff out of it, schlepped my tools and other personal gear into my garage, and towed the trailer (and Darth Neon contained within) all the way back down to Alvin. I fed him a mediocre lunch and gave him some unicorn beers that I won’t be able to drink anytime soon (stupid colostomy. Stupid chemo). He just stepped up and did it, on what turned out to be a record hot day here in Houston.

In case you were wondering, Matt’s an SCCA guy. He’s a racer. He’s a flagger. He’s someone I’ve had the pleasure of working a turn station with on several occasions, and he’s someone I trust to watch my back. And he’s another Tulsa boy, too.

I’m well aware that I’m going to have to dip into the (very deep) well of folks who have all contacted us since my diagnosis in December to help us. I don’t *like* it, but I’m aware of it and I’m starting to accept it. In the last couple weeks, it’s started. Diane Carter graciously took the time and spent the gas to haul me to and from a doctor’s appointment so Kim wouldn’t have to take 2 days in a row off from school during the run-up to the state testing. Matt busted his ass moving my stuff around and burned some serious diesel hauling that thing down to Alvin. Doc is taking the Neon back. Richard Tomlin is going to do SOMETHING with the trailer (maybe fix its rust problems and then use it to haul his stuff to Mexico for the next Chihuahua Express – there’s room for a spare LS in there, Richard – or maybe salvage the good stuff off of it and scrap the rest). All Good People. And this isn’t even scratching the surface of the long list of friends who have offered help.

Kim and I have each other, and though we’re both broken, each in our own ways, we keep each other going. But we get by with a little help from our friends. And I can’t thank them enough.