Quiet times and racing

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?

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Real Pants

There just wasn’t a lot going on yesterday. Just hung out at the house, did some household finance stuff, discovered that a couple hours of that was enough for my brain right now, and went back to not doing a lot.

The brain is coming back into active mode, but it’s taking a bit. I’m getting the itch to do some productive work again, though, which is a very good sign.

Today, I fished around through the pile of Levi’s in my closet and came up with a pair that wouldn’t fall off my hips, thanks to the 40ish pounds of weight loss I’ve had in the last few months.

And I wore them. First time wearing real pants (vs pajama pants) since the surgery in December.

They’re actually not exactly right – too long, and the wrong style, but I can fix that easily enough with a computer and a credit card. BUT…  I wore real pants for the first time in 5 weeks.

And then Dad and I went out and ran a banking errand and I introduced him to Manny’s Cafe, our local little Greek place. As it turned out, it was full of Oceaneering folks, including a couple of my former colleagues at DTS, so it was a bonus to catch up with them as well. And we had gyros (no onions for me, as they can cause issues with my revised plumbing).

It was good.

Strike that. It was VERY GOOD.

I continue to hold no illusions that as the chemo treatments continue, I’ll have some down days – that’s the nature of the treatment, with the medication being somewhat accumulative in the body. But it was REALLY GOOD to get out and do something normal, even if I still don’t quite feel normal.

And on the flip side, learned that one of my friends and the senior tech who knows where the bodies are all buried at Oceaneering is dealing with a blood cancer right now. He’s getting chemo to buy time, but needs a stem cell treatment. Cliff is about as stubborn and ornery as you’re likely to find, so I hope he can keep up his spirits and fighting attitude while the docs find a treatment plan to fix the problem for good. As we do, let’s spare some cosmic good vibes for Cliff.

And because it’s just one of those kind of things, our dear family friend Mary Sue, who is a breast cancer survivor, had a “basketball sized” malignant tumor removed from her ovary area last week and is about to start her own rounds of chemo to make sure there’s nothing lingering, though the surgeon is fairly sure they were able to get everything out cleanly. Standard practice in these cases. Mary Sue and her husband Dad are some of my Dad’s oldest friends, and they’re the kind of people who will offer you their spare vehicle so you don’t need to get a rental car when you’re down from Oklahoma looking after your son who got a colon cancer diagnosis. And thus, I ask for you to keep Mary Sue and Dan in your thoughts as well.

And Jackie, Kimber, Fran… all doing their own rounds of treatments to exterminate the mutant “crab” beasties invading their bodies…

We are a grimly determined tribe. Each handles it in his or her own way. I whistle past the graveyard. I get angry with it. I work to maintain my sense of humor, because otherwise, I’m one grim, miserable SOB to be around. Those of you who have seen me in what I call “Operator Mode” when something goes horribly wrong? Yeah, think that raised several orders of magnitude in intensity. It’s not a place I like going, and thus do silly things to stay far away from it.

I’m glad I’m not alone in this, while at the same time wishing I was alone in this, because I wouldn’t ever wish this kind of thing on anyone. It sucks.

So, have a nice weekend, everyone!

No, really: in all sincerity, please do something fun for yourself this weekend. I’m hoping to do the same, though after the week Kim’s had with work (Science Fair, STEM night, meetings upon meetings), that may just be something quiet and recharging.

Round 1, Infusion 1 is done

The pump did its thing. It’s now gone, I’ve received a Neulasta shot, and so far, knocking on all available wood surfaces including my head, no issues.

I hold no illusions this will be the norm, by the way. But I’ll take it for now.

So now, I have a week off, then I go back and do it again. And in the meantime, in theory, the stuff I’ve been shot up with will start killing the cancer and also rebound my white blood cells.

Additionally today, they took a blood sample for the genomic workup that was previously discussed.

Everything but the Neulasta shot was done through my port. And disconnecting from it was painless (there was a slight sting going in on Monday). I’m really liking this – and my hands and forearms are also going to get a chance to recover from a couple months of sticks and IV insertions. I can see the appeal.

(I have something called a Bard Power Port installed. It is apparently the current hotness in access ports, and the installation and operation of it has been the easiest, thing-that’s-gone-right of this whole medical adventure so far. Call me a fan.)

Because this was my first Neulasta shot, they kept me for a few minutes to make sure I didn’t have any adverse reaction (I didn’t), but that won’t be necessary for subsequent injections.

So, home again, nothing but the colostomy bag attached to me at this time. And now I let the chemo drugs go to work. I’m picturing cancer cells trying to do mitosis and being gene-blocked by the drugs — and the cells die. DIE DIE DIE! Die. And that’s the name of that tune.

Pump Life

Between the total fatigue of a busy day after nearly no sleep and some Tramadol, I slept pretty well last night, chemo pump bag at my side.

It just shoots about a tenth of a milliliter of the drug in every 35ish seconds.

Quiet day (really, under medical orders) while it does its thing.

No nausea.

I’m starting to get a little fatigued, but that’s largely unsurprising.

I go back tomorrow for it to be removed and to get a Neulasta shot to encourage white blood cell recovery. It apparently creates bone pain, which, weirdly, Claritin, the allergy medicine, is supposed to help.

That’s about all the news I have. Which is to say nothing much. This is not a bad thing.

Chemo: round 1

I’m home with a pump hanging around my neck in a bag. Ah, but you’re wondering how I got to this point…

Arrived, checked in, sent to my infusion room for the day, vitals taken, introduced to my nurse, and then began a lengthy “first infusion” discussion of what was going to happen, in what order, with what drugs, all their possible side effects, etc. And consent forms. Then the duty pharmacist came in and we did it again.

Then they accessed my port for the first time, did a check and purge, and got me hooked up to the IV pumps.

They started me off with a steroid as a buffer.

Then the first of two anti-nausea drugs.

Then the second anti-nausea drug. And a few minutes into that, I felt a weird tightness in my stomach, followed by flushing, followed by light-headedness, followed by me pushing the call button.

They stopped that and checked my vitals and gave me oxygen and the attending doctor came in and after a few minutes, I recovered, but they decided not to finish that (aggressive) push. They did give me some regular saline IV.

And after that pause and a planned waiting period (plus bathroom break because hey, lots of IV fluids), they started the first couple of chemo drugs, which took a couple of hours. I napped a bit after not sleeping last night, really.

Dad went to the cafeteria and got some lunch for us. I ate enough.

And then those were done, and there was another pause, and then they brought in the pump and a syringe with an initial push of said drug to see how I’d react (I didn’t, really). And more instructions, another consent form, and the pump was hooked up. I could have rigged the bag as a belt pack, but decided a shoulder/neck strap was a better choice given the situation with my incision and colostomy around my waist.

After hanging out for a bit to make sure it all worked, we were released and got to endure Houston rush hour traffic to get home two hours later.

In other news, the mystery shipping company tracking website updated later this morning from “pending” to “delivered”, and so we had my box of colostomy supplies waiting for us when we got home. Which means I get a new bag that FITS RIGHT tonight and can be rid of this ill-fitting thing once and for all. And perhaps just as importantly, a fresh supply of the magical anti-odor drops. That’ll help my mood.

Gonna be quiet here tomorrow. We go back on Wednesday at 1 to have pump and line removed. Supposed to be a short appointment, so maybe we’ll also miss traffic on the way home.

The anticipation

Tomorrow morning starts chemo.

Got my hair cut short on Friday.

Got my Chromebook out and updated for the several hours we’ll be in the infusion center despite the end result being me hooked to a port-a-pump in a butt pack for the slow infusion of the final component of the Folfox cocktail.

Got some excitement that we’re getting started.

Got some dread that we’re getting started.

So, pretty much normal, I suppose.

Meanwhile, I’m getting more and more mobile around the middle. Stuff still hurts, including, somewhat inexplicably, my right shoulder, which screams if I move it in certain ways. And the middle isn’t anywhere near full motion yet. I’m still getting oddball pain firings in certain parts of my body under what should be normal, this doesn’t hurt circumstances (like the shooting, stabbing pain in my right forearm when reaching for something with the hand/wrist in a certain orientation – perhaps a lingering aftereffect of an IV that was installed across the wrist pivot during the first hospital stay).

And I’m still trying to get used to this colostomy. It’s not helping that the bags we have available right now (shipment incoming) are designed for someone with their stoma located in some sort of concave hole in their body (navel, maybe?), and have their convex shape reinforced by a molded plastic piece we can’t remove. I am a convex person ’round the middle, so we’ve had to do a little additional work with tape to reinforce its adhesion.

And of course the medical supply house uses a shipping company I’ve never heard of and which doesn’t update its tracking information over the weekend. But maybe it’ll be here Monday or Tuesday.

But overall, things are improving.

Just in time for me to start poisoning myself on purpose, in the service of a higher goal, namely, killing this invading, alien bastard D-E-D DED.

In other news, my brother Dave’s colonoscopy was nice and free of issues, and he was told to return in 5 years. This was the best news on Friday. We don’t need to share this problem.

Gonna give the main TV over to Dad to watch football this afternoon. He’s gamely put up with my marathon Barrett-Jackson watching this week.

And that’ll let me do some laundry.

Fun stuff!

A day in the life?

So, while I’ve been able to function without the Tramadol (narcotic pain reliever) for several days, in the middle of last night, I found myself waking from sleep and basically it felt like every pain receptor in my nervous system was firing at some degree or other.

This isn’t the first time this has happened – since I haven’t started chemo yet, I can rule out peripheral neuropathy for now, but what I figure is going on is my nervous system gets overwhelmed by the remaining pain from the surgical incision and abdominal rearrangement and it just fires off things in some sort of attempt to dissipate the signals. Unofficially, there’s a non-zero chance that the main tumor is impinging on some of the nerves in my lower back – the CT seems to indicate that’s possible.

So there I am with my skin feeling a bit on fire, except cold, except maybe getting pinched, except…. you get the idea. The Tylenol I’ve been taking isn’t touching that.

So about 2 am, I took the first Tramadol I’ve taken in 4-5 days. I feel a little defeated having to do so, but at the same time, the pain sensations dulled down enough once it was in my system 45 minutes or so later that I was able to get back to sleep and actually get some rest, which is sort of the point of the whole “go to bed at night” thing.

I’m now 4 weeks out from the surgery. I’ve still got a little bit of an open wound left where the abscess was, but it’s getting better a little bit at a time. I can still feel the area of the incision in my fascia muscles when I move or sit or lay down certain ways — it’s still healing up. My gut rearrangement for the colostomy is still in the “coming to terms with this” state, but hey, I made it 49 years with my plumbing configured one way, so 4 weeks isn’t really that much time to get used to something different.

Folks who’ve had similar abdominal unzippings (Hello, female readers who’ve had C-sections) tell me 6-8 weeks isn’t uncommon for recovery time, so I’m probably just being impatient with myself.

But then on Monday, I get the first Folfox infusion started.

Not gonna lie: I’m ready for it, ’cause I want this alien motherfucker inside of me dead, but I’m also terrified. What side effects will I get? How bad will they be? They’re going to give me a bunch of anti-nausea stuff before and I have some here at the house for after, but is that going to be the problem, or will my hands feel like they’re frozen even in hot water and on fire when they’re really ice cold? How about my hair? Need to get it cut anyway, so I’m going for something super short. How will my brain functions operate? I’m just now getting out of the haze of pain and, well, narcotic painkillers to a point where I can do higher-level functions for slightly longer periods of time without getting completely exhausted (I just did a Sunday NYT crossword from back near the tail end of November – that’s how far behind I am – but I’m not up for doing more than one at a time right now) and I am starting to think about doing actual (paying) work again, at least part-time, and probably from home, but how bad will ChemoBrain be? How long will it last post-infusion?

These are the questions I won’t be able to answer until we start in on this thing. I wish I had a better idea, but the truth is every patient reacts differently, so there’s no one answer the doc can give me, just a range.

I’m tired of hurting.

I’m tired of waiting.

I’m tired of not being able to do my thing with my brain the way I’ve always done.

But there’s gonna be more of all of those, I suspect. We just can’t know until we know.

And that’s probably the scariest part for me.

On the plus side, my “little” brother Dave is prepping for a colonoscopy. He’s 3 years younger than I, and I hope like hell that he’s all free and clear, or if anything is found, it’s found small and easily snippable. He’s doing this because I asked him to, so he doesn’t have to deal with this at the stage I’m dealing with it — the docs all agree that this thing has been growing inside me for at least a couple of years, maybe more.

Remember, early detection is the best plan. I’m living proof that missing it is big problem. Don’t be like me in this case, be like Dave.