- Had 3rd infusion, which apparently is “Cycle 2, infusion 1” in the language of my medical team. Sitting here with the pump hooked up.
- Tomorrow is oncologist consult. We’ll talk about what’s next, my ride on the side-effects train, and also why the insurance plan that’s administered by the very medical group system that’s treating me and employs all my doctors has sent me (via the commercial insurance company I actually buy the insurance from, unlike the approvals, which are sent from the medical group to my online account with them) has decided to reject what I think is the 2nd infusion treatment because it wasn’t specifically requested by my doctor, where the first approval was clearly (at least to me) for a 3-infusion series.
- Also tomorrow is a brief visit to the attorney who is handling various estate paperwork redux for me: new will, durable power of attorney, medical power of attorney, advanced directive. Given that my currently-in-place will is the one my ex-wife and I did and we haven’t been married to each other since 2009, probably time to update things. This is a thing Dad has been pushing pretty hard and took the lead on organizing. Makes him happy, I guess, but to be honest, I think he’s got the attitude of my first wife (She Who Will Not Be Named Lest She Appear) and my 2nd wife, Karen, conflated. Karen and I get on fine, and I trust her to honor my wishes for disposition of things, but this new will sorts that out officially, I guess.
- One of the humorous things that happened today while I was at the infusion center was a call from down the hall at the oncology office where one of my doc’s PAs wanted to schedule me for a blood draw a half-hour before my appointment tomorrow, a move that would literally require us to leave the house an hour earlier because Houston traffic. I suggested that, maybe, instead, as I was sitting less than 100 feet from her at that moment and was soon to be unhooked from the IV pole in prep for my personal pump, maybe they could do the blood draw from my port like they’d done at the beginning of the day. Struck by a sudden burst of logic, she agreed that would be great, and would check to see if it was possible. It was. They did. Job done. Then they hooked me up to my chemo dribble pump.
- One of the great things today was the infusion center had 3 “bell ringers” today: patients that had completed their last (we all hope) chemo session. They also get to pick a song to go with it, apparently, so we had Destiny’s Child (Houston connection!) “Surivor”, Wagner’s “Ride of the Valkyries” (“KILL THE WABBIT! KILL THE WABBIT!”), and I didn’t catch enough of the 3rd one to place it. So, looking ahead a little bit, I’m leaning toward Frank Turner’s “Get Better” because it pretty much sums up my stubborn tendency to plant my feet and hold off whatever it is that’s coming at me (opening lyric: “I got me a shovel/And I’m digging a ditch/And I’m gonna fight for that four square feet of land/Like a mean old son-of-a-bitch. I got me a future/I’m not stuck on the past/I’ve got no new tricks, yeah, I’m up on bricks, but I’m a machine and was built to last.”) and the chorus is just uplifting to my mind (“We’re gonna get better ’cause we haven’t been our best/Take a plain black marker, and write this on your chest/Draw a line across all of this unhappiness and say ‘Come on, now, let’s fix this mess’/We can get better, because we’re not dead yet!”). But that’s a ways off yet. Still, good to have goals, yes?
- Dad’s driving an F150 SuperCrew on loan from one of his oldest friends who lives not terribly far away (Alvin). He’s not driven something that size in some time and spent a lot of the drives today talking about how big and non-maneuverable it was, and I just laughed ’cause compared to my F350, that thing’s a sports car. Nice truck, though, and working SiriusXM, though the first thing he did this morning was turn the radio off. Gonna have to correct that tomorrow and Wednesday. Classic Vinyl, here we come. 😀
- Speaking of trucks, did I mention I got out in mine last week for the first time since December 19th? Yes, I did! Drove it Thursday, Friday, and Saturday. Felt great, even just tooling around my local area a little bit. He also got a new windshield installed on Friday – replacing the 19-year-old, 369,000 mile original that somehow survived up to earlier in 2017 when it took a rock hit on I-10 that turned into an 8″ long crack before I could even stop to look at it. Said crack then turned and headed for the driver’s side A-pillar. It was mostly unsightly, and largely out of my eyeline, but it meant it was time. Considering that the installed price of new Ford (not aftermarket) glass was less than half of my comprehensive insurance deductible, no claim was filed.
- Dad arrived on Saturday, and Kim and I invited him out to dinner with us. He decided to let us do our own thing, and it turns out it was just as well he didn’t come as our trip to Orleans Seafood on I-10 was noisy and crowded and we wound up sitting at the bar (which has full service, vs the main area, where you wait in line, order, then have to come pick up your food). Saturday night, good weather… yep, crowded. Food was great, though. Oddly enough, Dad wandered areas he was semi-familiar with and wound up at Sam’s Boat up at the Towne Lake area, which is just about as crowded and loud as Orleans is on a Saturday night, spared only by having seating only about half as dense as Orleans does.
- The side-effects train started in earlier than ever today. Already having peripheral neuropathy issues in the fingers, including some occasional “stuck” fingers that a little overcenter knuckle position, normally no big deal, can’t recover for a beat or two. That’s new.
- Also, my temperature regulation issues are already showing up. After the infusion center, we got home and I went from the stylish plain gray sweatpants I’d worn there (hey, soft clothing designed for being in public, vs the pajama pants I’d been rocking? This is an improvement! I’m not sitting in that infusion chair for 4-5 hours in jeans) for some cargo shorts – namely an old pair I love that I’d gotten too fat for some years ago, but now are actually slightly loose. They’re comfy. But after the sun went down, and dinner was done, and then the @#$#@@ AC turned on because Houston, I got chilled enough that at my next bathroom break, I switched to the PJs and added a sweatshirt. I’ve since lost the sweatshirt, which was probably overkill and switching to a long-sleeve t-shirt is probably the better answer for when this happens tomorrow (because it will. Now watch me get so chilled that the sweatshirt IS the right answer, dammit).
- I’m doing some dietary changes this week and going for bland-ish and lacking in grease after the weirdness of 2 weeks ago.
- All this means the chemo infusion is doing something, right? We’re just not sure what, specifically, it’s doing just yet. I choose to believe it’s working as described on the tin.
- And I’m tired now. Gonna go to bed here in a bit. After last week’s return of my occasional Insomia Week Follies (which predate the cancer by decades), I’ll take some sleep, thanks. I mean, I’m tired enough I’m watching ice dancing. How these folks move is amazing, I’ll grant that, and I could never do what they do (every time I’ve ever been on ice skates, it’s been hard on my elbows), but it’s just not ever been something I’d watch normally. Let’s say I’m expanding my horizons.
- Call this one the last bullet. ‘Cause it is.
I originally posted this the other day on Facebook. It got a lot of responses there, as you’d expect. Since this is the place I’m putting up The Story Of My Journey Through Cancer (which sounds like a Very Special Movie Event Coming To Lifetime TV, Starring Meredith Baxter Birney as Jim Crider), I figured I’d copy-pasta it here as well:
My No Woo-Woo Policy:
I suppose enough time has gone by to restate my “No Woo-Woo” policy:
I know no small few of my friends are into alternative medicines, herbals, vegan diets, essential oils, acupuncture, acupressure, Tibetan Cancer Curing Massage, Ancient Sichuan Woolly Yak Penis Extract Powders, etc.
I know you care about me and my health and want me to beat this cancer. I greatly appreciate that, and I’m glad to have you on my team.
But please, PLEASE, ***PLEASE*** refrain from posting suggestions that I try X thing to “cure my cancer”. Don’t put them on my FB wall. Don’t tweet them at me. Don’t DM me with them. Don’t email me with them. Don’t put them in comments on my blog.
I have a fantastic team of doctors, lead by a very highly qualified oncologist who aggressively stays up on the latest science. I am under his care, following the treatment protocol he has prescribed.
I will not self-medicate with ***ANYTHING*** without running it by him first to check all the possible interactions and if it’s even something worth trying. To do otherwise is to court at best a delay in my treatment and at worst some sort of reaction that puts me back in the hospital or kills me. These are *his* instructions and I’m following them.
Again, I appreciate your concern, but I have way more than enough on my plate without having to field woo-peddling. Takes away energy I could be using doing something productive (like maybe getting back to paid work).
Woo posts will be deleted with prejudice. Repeated woo posts will get a block. I’m sorry. I don’t have the energy for this stuff.
I had such hopes for this week. The temps were going to go up into the upper 50s and low 60s, and I’d be able to get out and drive the truck and do some real person stuff.
It’s been in the 40s until today, when it got up to 51. And wet and crappy.
One of the things this cancer has done has made me far more sensitive to cold than I used to be. This started long before the chemo did, and I suspect one aspect of it is that I’m down over 50 pounds in weight since August, 2016. Lose that much blubber and you don’t have anywhere the R factor in your body that you were used to, so the metabolism is trying to keep up with a higher Q-dot (thermal flux).
But the metabolism is getting FUBARed by the cancer (and now, the chemo), so it’s still playing catch-up ball. Flannel PJ bottoms or sweatpants, sweat shirts, and throw blankets are the order of the day.
Our house is of little help here. Built in 1989, the master bedroom, main living area, and kitchen abut the exterior wall on the logical north side of the house (it’s not square to the compass rosette because builders are more committed to “rakish” than logic). I’m told there’s insulation in the walls, but I’ve got my doubts about its current effectiveness, especially if it was blow-in. It sure as hell isn’t 2lb spray foam.
Also, in the master bedroom and the living room, there are huge roughly 6ft x 6ft windows. Like every other window in the house, they are builder-grade aluminum-framed single-pane glass (note that double-pane windows were readily available at least 12-15 years prior to this house being built). And they’re a bit porus, as is the back door weatherstripping (which I keep meaning to fix, but…).
And… AND… both the main part of the house and the master bedroom have lofted ceilings peaking about 13ft. Guess where the forced-air HVAC registers are? Yep. Ceiling. Only the kitchen, 2nd/3rd bedrooms, bathrooms, stubby little halls, and utility room have normal ceiling heights.
Most days of the year in Houston, this isn’t a problem. Hell, most years in Houston this isn’t a problem because we have maybe a week, tops, of this stuff. But it’s been lingering since December. We’ve had a few breaks, but it’s been one or two days at a time.
Since it’s been wet and crappy, it pretty much saps any desire I have to go out in it. Since I really haven’t had a need to, I haven’t.
Meanwhile, and I know you’re all RIVETED to find out about this, the Saturday 9am colostomy bag is still holding fast as of this writing, even in the face of some amazing loading factors yesterday.
I’m gonna put that behind a cut so only the really, truly, interested can choose to read it and the rest of you can just ignore it. Honestly, I’d ignore it. Especially if you’re at work. Or for some reason reading this blog while eating. But I promised to put it all out there, unvarnished, and I’m going to keep that promise.
Okay, the cut didn’t work as I thought it would.
HERE THERE BE DRAGONS. READ ON AT YOUR OWN PERIL. NO, REALLY.
So the bag installed at 9am yesterday is still holding as we approach 3pm today. After spending all of yesterday completely paranoid that it was going to pop loose like all the others I’d put on Friday and Saturday had, and thus didn’t do much.
It’s somewhat paralyzing to think that at any moment, you’re going to drip poop everywhere, so you end up staying home where you have supplies and a bathroom equipped with all the stuff you need to contain and clean up if (and, Friday into Saturday morning, when) it happens.
And thus I didn’t go out for a drive while the weather was decent (today’s high temp happened at midnight and it’s just hovering around the mid-30s here and thus I have no desire to go out).
But I’m feeling better today. Getting through the night and into today helps. I’m afraid to talk too much about it lest it think I’m confident and pop loose to prove me wrong.
I also ordered another box of bags — because of insurance restrictions, had to pay out of pocket. Ten of these bags? Just under $120 as a cash customer. They ship Monday. My regular monthly replenish shipment goes on Friday. It was supposed to be last Friday, but insurance said no, not until this Friday. Needless to day, I’ll be tweaking quantities in next month’s order.
Dad left sometime around 5am. I was up changing my bag, so I heard him head out. He made it home safely in good time, despite getting some icing in the last 60ish miles or so. He also got out of the house and to his rental car seconds before it really started raining here, so lucky break for him there.
What’s up for this week? Get my expenses for 2017 sorted so I can do taxes, and if things go as I hope, checking in with my client to see if I can start doing a little paying work. Not up for full-time (especially during chemo weeks, when it’s possible I won’t be up for ANY work), but if I can start getting some hours back in, it’ll help many things: my bank balance, my cognitive functions, my stamina, and my mood.
And I will get out and drive around some, probably as soon as tomorrow, when it’s supposed to be “significantly warmer” (i.e. upper 50s instead of mid 30s). Which will also help my mood. Those of you who know me well know that driving is therapeutic for me.
Anyway, after the last rather depressing update, I figured I’d better post a more positive one now that I’ve got a little more positive news to share.
To recap, I’m doing a 3 day infusion protocol every other week. Go in on Monday, get stuff pushed including 2 of the 3 elements of Folfox, then get hooked up to a pump that dribbles in the 3rd element over 46 hours. Go back in on Wednesday to get the pump removed and, to boost white blood cell recovery, a shot of Neulasta.
This week, add in 2 units of blood on Thursday to boost my saggy hemoglobin numbers.
Well, after the first round, on the Thursday I was kinda blah all day. This time, after the second round, and despite the hemoglobin boost, I was really blah. I’ll admit that some of my dietary choices contributed to this, and thus we’re making some notes – no Chinese food post-chemo, for instance, not even mild stuff. But I was just off last night, really really blah.
I was looking forward to maybe a good night’s sleep as I’d not really had much the night before. I went to bed at 9:30ish, took the morphine, and… yeah, got a few hours.
And then poop.
I’d been planning on changing the colostomy bag this morning as a regularly-scheduled event, but about 3ish in the am, the bag decided it was done and started leaking at the usual spot on the seal between it and my skin.
Well, up and to the bathroom and execute the bag change and back to bed and now I’m awake so I stay awake reading for a bit and it was a good thing I did because the new bag didn’t seal right (probably installation error on my part) and also started leaking and because I was awake I didn’t get any poop on the bed.
Back to the bathroom at 5am and change the bag again, except that the sealing paste hadn’t had time to set up, so I had to remove it with my wet-with-hot-water thumb, a little bit at a time. Tedious and somewhat irritating to the skin surrounding the stoma.
But I got it off, got the thing all cleaned up, put a new bead of caulk down, and much more carefully applied the 2nd bag of the morning.
And then I didn’t really sleep much more. I had what looks like the last surgical follow-up with the surgeon this morning, so I had to get up and get dressed and we had to drive the 30 miles to Kelsey-Seybold. And lo, the surgeon looked at the healing-nicely wound, put a little silver nitrate goo on it to encourage some skin growth, slapped a big ol’ band aid on it, and pronounced it good. He thinks the skin will be grown over it in another week or two.
Then we came home.
I should say here that when I got up this morning, I was feeling MUCH better, and that’s continued through the day. I’m sure part of this is related to the fact that I was able to emit poop (chemo can induce constipation) last night. Much of my discomfort was pressure in the GI tract. which pooping relieved.
And thus it was with a great deal of consternation that during once such poop event mid-afternoon, the contractions my belly/abdomen go through popped the seal on the bag I’d installed at 5am.
Back to the bathroom. Change for the THIRD time today. More scraping of sealing goo. Clean myself up. Apply more goo. Carefully apply the new bag…
…and before I could even get dressed again, my fucking body contracted and squeezed out a new nugget and popped the fucking seal on the new bag before the adhesives had a chance to even set up properly.
Well, it was just a wee little bit so I wiped it up and re-pressed that part of the bag seal back into place and held it for a while so the adhesive would have a chance to set and thought I might’ve gotten away with it within the window of viable adhesiveness.
And I did get away with it. For maybe an hour and a half. Then it popped again and I was back in the bathroom for the FOURTH bag change of the day.
Keep in mind here that the manufacturer says these things are good for 5-7 days. The colostomy patient forums, however, dismiss that as marketing BS and say basically “yeah, just figure on changing every 3 days”.
This time, I kept pressure on the adhesive ring for a longer period of time and also through a few contractions.
It’s been about 2 hours and several contractions and this one seems to be holding. FOR NOW. I’m applying pressure when the contractions happen. [ADDENDUM: popped it at 2hrs, 20 minutes standing up to get off the toilet. I am enraged.] [ADDENDUM 2: Yep. Had to replace it just over 4 hours in. Trying messier but previously-reliable “enough goo to squeeze some out when pressing bag seal down” method.] [ADDENDUM 3: Well, that didn’t work due to… something. Probably something to do with different brand of goo which is less viscous and sags off me before I can get the bag applied. Applied YET ANOTHER BAG with the goo on the bag’s adhesive ring itself and we’re looking at almost 10 hours now and it’s holding. Except now that I’m talking about it, it probably won’t much longer. I’ve also called my supplier and had them ship me a fresh box o’ bags on Monday before my regular monthly shipment leaves on Friday. Of course, had to pay cash – well, plastic cash – for this because my insurance is a little persnickety about when it will allow a shipment to go out – we were supposed to do it this past Friday the 9th, but the insurance said not before the 16th. Anyway, there’s a fighting chance I’ll not run out of supplies.]
Keep in mind that unlike our sphincter, which we have some degree of conscious control over, I have no control over when the section of my descending colon that feeds into my stoma will act. It’s part of the autonomous nervous system and thus figuratively has a mind of its own.
I’m going to try to sleep tonight, but I’m wondering how my poop paranoia will work to prevent that.
Dad drives his rental car home tomorrow into the southern edge of a winter storm. He’s cautious and will be sticking to the big roads and should be leaving early enough that he’ll miss a lot of it. He’ll be flying back next weekend because apparently he just can’t stay away.
The peripheral neuropathy seems to have backed off, though you won’t catch me reaching into the freezer without gloves as that’s an experiment I don’t want to try right now.
So… for the weekend? Hoping for quiet. Maybe take a drive for the first time since December 19th. Laundry. You know, exciting stuff.
Been a little quiet on the blog front here. Basically, spent my “off” week from chemo doing some housekeeping, updating some paperwork (estate planning), and generally just not spending a lot of energy on things.
I did get out to the Oceaneering DTS/ex-DTS “Payday Thai” lunch on Friday, for the first time since before Thanksgiving. Ate gingerly from the menu, but the best thing was getting back with my friends from the DTS days.
This week, the 2nd chemo infusion started on Monday, ended Wednesday. No problems, no issues… until Dad and I went to lunch afterward on Wednesday and I went to pick up my iced tea glass and ZAPZAPZAPZAPZAP in my fingertips. Ah. There’s the peripheral neuropathy and cold sensitivity I’d been told to expect.
Wrapped glass in cloth napkin, continued on, until a piece of ice slipped into my mouth and, out of habit, I crunched it. ZAPZAPZAPZAPZAP. Right. Not doing THAT again anytime soon.
The feeling is invigorating yet highly annoying.
The OTHER thing going on this week is I’m sitting here just about done with my first of 2 units of blood being transfused into me. Seems the ol’ hemoglobin is still way down, and trended downward. Two weeks ago at the first chemo infusion, it was 9.xx, which is below normal. Monday it was 7.xx… so the doc ordered a couple pints of (in my case) A Positive to boost things.
We had to go to a different infusion center for this, but it’s just ’round the corner from where I get chemo, really. That said, thanks to the wonder that is Houston rush hour traffic, the roughly 31 mile drive took about an hour and a half.
Oh, the first unit just finished. Just under 2 hours. I’ll take it. Faster it goes, sooner I’m out of here.
Little weird receiving someone else’s blood. This is the first time I’ve ever had to receive. I used to donate fairly regularly, but of course I can’t do that right now.
Those of you who donate? Thank you!
In other news, last night I had a phone call with the gentleman who essentially gave me use of Darth Neon, my club racing car you’ve probably almost never seen or forgotten about. It’s been on ice, basically, for a while, as I’ve not had the resources to go racing with it. Because of a lack of space at the house, and HOA rules, it lives in my trailer, which is stored nearby, but I have to pay a bit over $200/month to store the trailer. So I called the gentleman to see if he was interested in taking the car back – and he will do so.
Racers are wonderful people, and this particular man is a genuine mensch. Since I moved here from Detroit and got involved with the local SCCA club racing scene, he has been an incredibly welcoming and generous person, inviting me to hang out at their facility at MSRH for post-race activities, giving me use of one of his cars for my race licensing school, and generally just being a very giving person who shrugs off any praise as no big deal.
We should all be so lucky to know someone like this.
Anyway, he’s going to take the car back, and I’m sure he’ll find use for it far more than I was able to. I’ll get my personal stuff (tools, Mustang parts, etc.) out of the trailer, and I’m working on a way of offloading it as well.
I do not want to sell it to just anyone. The previous owner of my trailer ran on the Bonneville Salt Flats, setting land speed records, and the trailer’s underside is suffering a bit (ok, in some spots, a lot) from the salt exposure. I’ve got a Plan A, but Plan B is it goes to a salvage yard for scrap metal value – that’s how little I want it out in the world without repair.
But once that’s done in the next few weeks, I’ll be free of that monthly hit on the budget, and also the car will be able to get back in circulation and playing on the race track where it belongs.
Meanwhile… BLOOD…. unit 2 is going in.
I haven’t posted anything in a few days, not because anything has gone wrong (it hasn’t), but because I’ve just been hanging out here at the house and doing some pretty normal stuff.
Like watching the Rolex 24 Hours of Daytona. No, I didn’t stay up all night – I’m not in my early 20s anymore – but I did watch all that was broadcast on Fox, FS1, and FS2. Therapeutic for me, probably traumatic for my dad.
This is an off week for me for chemo infusions, so I’m taking the time to look after some housekeeping stuff here. Financials and the like. The Explanation of Benefits are starting to come in, and some of them are… interesting. It’s clear I’m going to be having discussions with my insurance carrier and some of the providers. Not going to sweat it right now, but I guess it’s good to know up front that I’m not immune to the stupid insurance shenanigans that friends of mine dealing with cancer treatment have had to deal with.
It’ll be sorted, eventually. Some of it’s just stupid stuff: my insurance company changed the name of the plan for 2018, so even though every single ID number, etc. on my 2018 card is the same as my 2017 card, my Methodist West hospital stay that started 12/27/2017 and ended 1/1/2018 was denied for “coverage not valid at time of service”. Um, yes, it was. So we’ll have to sort all that crap out.
Yes, I’d prefer single-payer. No, I don’t want to argue about it. The USA is the only major industrialized nation without it. Yes, countries with single-payer have issues. There’s no reason, however, why we in the US, who are really good at solving problems, couldn’t take the best of what works elsewhere, and address the problems they face, when setting up our own version.
And that’s about all I have to say about that at this time. (It’s okay if you read that in Forrest Gump’s voice.)
After Kim’s adventures in 2016 & 2017, and the experience of friends dealing with health insurers in the case of chronic or major illnesses like cancer, it’s clear to me that the current system is set up to do the opposite of what all the insurers’ advertising claims, namely deny, deny, deny, obfuscate, and throw up as much red tape as possible so that the insurer keeps as much money in their coffers as long as possible. They’re not on the patient’s side.
And I’m just starting on this process. It’s only going to get more complicated as my treatment continues.
But that’s a fight for another day.
Right now, just going to keep hanging out here and dealing with more mundane issues while I can brain.
Exciting stuff, huh?