Posts by autojim

Engineer for hire (https://jcriderconsulting.com). Car Guy. Waver of flags at race cars. Pretend race car driver. Nerd. Sea Monkey.

I’ll take “Things Going Okay” for $1000, Alex.

This is going to be one of those bullet-point posts, so you know, and if you’re using screen-reader software, it’ll say whatever it says for bullet points.

  • Wednesday disconnect went fine. No one fell down in the parking lot, either.

 

  • The plumber came in the afternoon, discovered the disposal’s cam-lock flange to the bottom of the sink wasn’t ever really tightened properly, spent a few seconds fixing that, verified no more leak, and was gone. Need to work with landlord on replacing bottom floor of cabinet, but at least it’s not leaking.

 

  • Went to a very nice newish Indian restaurant for Kim’s birthday dinner.

 

  • Unrelated to the Indian restaurant, this particular colostomy bag is a good little soldier and managed to stay attached last night as I started pooping for the first time in a couple days while I was filling the truck up with diesel on the way home. Yes, it feels as weird as it sounds like it should feel. There was a LOT of poop. And thus I made a direct line to the bathroom when we got home and emptied it and rinsed it out and it’s still hanging in there nicely. That’ll do, bag. That’ll do.

 

  • I’ve got the “feels like a sinus headache but isn’t” chemo head again this week. Right now, it’s a little worse than it was earlier in the day, but it’s not as intense as two weeks ago. I spent most of the day not really doing anything that would take much energy in the hope of moderating the effects a bit (higher low, lower high). We shall see how tomorrow shakes out, but I’m honestly pleasantly surprised that it’s not worse.

 

  • I’m probably done with iced things again until I’m done with the chemo. Starting to get that little twinge at the back of the mouth, but not the ZAPZAPZAP of the last time, so I’ll take that as a good sign and not push my luck.

 

  • Long-time readers may recall that we had to cancel our trip to the JoCo Cruise earlier this year due to my situation. I had this leftover credit with Southwest Airlines that I needed to use by November 18th (when I booked the flights for JCC). We used the credit in Kim’s name earlier this summer for her trip to SLC for Andy’s funeral services, but mine was still there, needing to be used before it expired. Well, that’s not gonna happen for a variety of reasons, so I figured what the heck, call them and see if I could maybe get about 8 days of grace period extension so we could use them to get to Tulsa and back for Thanksgiving (the week after the dollars would expire). The first nice person I talked to said she couldn’t extend them until after they expired, which would have left me with about 2 days to book travel on the busy weekend of the year… so she gave me not only another number to call, but told me specifically which menu option to choose so as to get to the right people.

    And so I did. And I told my tale of woe again (but in a cheerful voice), that we’d canceled because I had to have fairly major surgery and then chemo for colon cancer, but I’ll be finishing chemo and our family’s big gathering is Thanksgiving, and it’ll be my grand reappearance. The nice lady on the other end of the phone said she’d need to check something, put me on a short hold, and came back and told me they’d refund me the full amount of the credit… which they absolutely did not have to do, I hasten to point out. So I thanked her and told her I was booking our flights as soon as I got off the phone with her. Which I did. We shall not speak of how I borked the return date and had to change it from December to November, which unsurprisingly cost a bit more money, but that’s still okay.
    So we’re flying to/from Tulsa instead of doing the drive as usual this year. More money, but less time. And less net money than it could have been, thanks to Southwest’s being nice.

 

  • Got word from a dear friend and former colleague at Oceaneering that he’s taking a transfer back to Houston from the wilds of Huntsville, Alabama, next month, and I’m really happy that he and his family will be local again. Having good people back local is the kind of good news I like to get on an infusion week.

 

  • On a somber note, our good friend (and my occasional partner in crime) Glenn’s father passed away this morning from a version of the same kind of cancer I have. I never got to meet Glenn’s dad, but I know Glenn and given his very high quality as a human being, I’m sure I’d have liked his dad as well. If you would, spare a thought for Glenn and his family.
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Tuesday: A nearly full accounting

It’s been almost 2 weeks since my last post. Made it through the rest of chemo #7, I’m currently hooked to chemo #8, which comes off tomorrow. The week between was pretty normal as far as those go, and I’m happy for that.

So yesterday, we go in for #8, and I’m not in the infusion center, but in the IV center, which isn’t as nice of a place. Same staff, but the no working windows (they’re blocked off on the outside because of some construction). And chairs that have the recline control on a handle standing off about a foot from the back of the chair so the person in the chair can’t operate it.

No big, get set up, get the steroid, get the anti-nausea drug, get the FOL and the OX hooked up… and have a reaction. Very flush, back of my mouth/throat gets a little tight, but not constricted. Kim summons nurse before I can. Push stopped, swap to saline, inject hydrocortisone, monitor… and things calm down before needing the Benadryl injection. Resume push, finish, no more problems.

Last night uneventful.

Get up this morning, and have to retrieve something from under the kitchen sink, which is when I notice that we’ve got a leak and the cabinet floor has gotten soaked and sunk and there’s now a puddle. Call landlord, who starts summoning the plumber. Of course, we have to leave for an oncology consult before that’s sorted, so we didn’t get the plumber today. And with the pump attached, I can’t get into the cabinet very well without endangering the pump or tubing, so when Kim came home to take me to the doctor, she got to empty the cabinet out (in case landlord and plumber arrived while we were gone).

Plumber is coming in the morning.

And so we went to the oncologist. Reviewed the CT results, and most everything looks the same or smaller than it was in April, even though I’d not had any chemo for about 4 months. The exceptions are a couple of lymph nodes that are maybe a little bigger. So that’s good.

At the doc’s direction, I’m going to restart the blood pressure meds, but keep an eye on it, as it seems I’ve recovered enough from my surgery and the first 6 rounds of chemo that my body decided a couple weeks ago to go back to being slightly hypertensive. Whee.

And because of the reaction I had yesterday, he prescribed Prednisone for me to take ahead of the remaining infusions, to be combined with Benadryl. Because apparently, once you get this reaction to the Oxaliplatin once, it’s likely to happen again. So, Fran, yeah, me, too, now. Whee. Again.

And… we discussed the post-infusion-12-and-surgery plan. I said I fully expected more chemo after, because Stage IV and we want to make sure we get everything, but the doc indicated we’re more likely to go to a maintenance chemo (FOLF, minus the OX, or an oral chemo pill whose name escapes me. The oral form is easier from a “don’t have to go get hooked up to a pump every two weeks” standpoint, but apparently has a bit harder peripheral neuropathy hit, which can be countered with other drugs, which… you get the idea. But in general, the concern is that they don’t want to leave anything behind that may be too small to image (all imaging systems available have resolution limitations), only to grow again down the road. So I’d be on this for a while, and maybe over time, we’re able to increase the interval between doses, and maybe if I’m really lucky, I’m able to be one of the ones in which it doesn’t seem to come back at all, and some years down the road, I can be declared “cancer-free”.

Well, shit.

Here I was thinking that once it was dead, it’s dead, at least this form of colon cancer. That was the impression I’d gotten from previous conversations. But now that we’re getting closer to that end game, comes to find out it’s not an end game so much as an ongoing campaign. I guess I can hope I’ll be able to level-up (get to less-frequent doses) with time, and eventually get to the end of it.

Now that I’ve had a little bit of time to process that, I’m deciding that this doesn’t affect what I want to do after I’m done with the main course of treatment. I’m going to get back to living as full as I can. Get the strength and stamina built back up. Get back to working full-time and repaying the faith and surprising (to me, not to them) loyalty my employer has offered me. Get back on the bike after a many-year layoff — this will help with strength, stamina, and keeping my mass down. I may not like how I lost the weight, but I can’t say I didn’t need to drop some tonnage, and I owe it to myself to do what I can to get myself into better shape and stay that way. At the very least, it’ll help me fight off what’s left of this stuff, and maybe get rid of it entirely in some sort of provable fashion.

Oh, and as we left, a lady slipped on the wet pavement out in the parking lot and fell and hurt her leg and bonked her head, and I was one of the people who went to help her, chemo pump bag and all, because it’s an automatic response to me. Professionals we summoned, as was a stretcher, and she was taken to the on-site ER to be checked out. Gave one of the nurses a triage assessment as I was holding the lady’s head steady, while a car service driver was talking and talking and talking and no one was listening to him because he was speaking nonsense. Nurse gives me the “you’ve done this before” look, which got “I do response work at race tracks.” Hope the nice lady is going to be okay with just a little ouch and nothing broken.

And so here I am. Tomorrow, plumber. And disconnect. And Neulasta shot. And my 3rd copay of the week. And Kim’s birthday. She managed to sneak in one “old man” reference on today, the last day she can this year.

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.

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.