Posts by autojim

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

For Fran. And Marinna.

Fran Shirley passed today. We were classmates. We both had colon cancer. Hers was nasty. She gave it all she had. She helped me get my head on straight after I got diagnosed.

She was supposed to beat this thing, too.

My heart goes to Lawrence, her love, and Smudge the dog, her other love. And to her family and friends.

I also have to mention Marinna Lee, a fellow Sea Monkey and a person I knew mostly in passing as someone with a lot of love for people. Marinna passed December 26 from some exceptionally nasty cancer that just wouldn’t quit and seemed to consider the treatments as nourishment. My heart also goes out to her husband Matthew and all of her family and friends.

We live to dance another day
Just now we have to dance for one more of us.
So stop looking so damned depressed,
Sing with all our hearts, “Long Live the Queen.”

(From Frank Turner’s “Long Live the Queen“)

I’ll post an update about me soon. Right now, let’s just raise our glasses to Fran and Marinna. And Pat’s dad. And, And, And. Tonight, it’s about our absent friends.

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:TAP TAP TAP: Is this thing on?

I’m way overdue on a post, but it’s also 11pm here and to do this proper justice would involve staying up way later than even I think is wise.

So, some highlights to be detailed later:

  • December 11th was the 1 year anniversary of my diagnosis with Stage IV Colon Cancer. I’ve still got it. But I’m getting better.
  • December 11th is also the 10 year anniversary of my pulling out of Michigan (on a 12-degree F morning) to move to Texas.
  • December 15th is thus the 10 year anniversary of my officially becoming a Texas resident as I got the keys to this house that day. My landlord is likely glad I’m still here.
  • Today, December 20th, is the 1 year anniversary of the surgery that installed my colostomy. The colostomy celebrated by blowing out the bag this afternoon at the office, because it’s an asshole. No, really, it’s an asshole, it just happens to be located in the front of my body and lacks any sphincters to control output because it’s just a hole cut into the wall of my descending colon, which has been unceremoniously sewn to a hole cut in my abdominal wall.

Have you noticed any sort of ongoing theme about my colostomy? Like how much I loathe it, even though I acknowledge that it’s partially responsible for my still being alive?

  • After their special “secure” email system lost my completed medical records transfer authorization form and I had to resend it via regular ol’ not-so-secured email (which worked) a few days later, I’ve missed out on any chance of meeting with my new medical team this year, and the earliest I can see the new oncologist is currently January 24th. And I can’t see the surgeon before I see the oncologist. So my plan for having surgery in the first part of January is completely borked. If I’m lucky, I might be able to get it done in the first part of February, which jeopardizes my recovery in time for Boat. Anytime after, say, February 7th, though, means I’ll be packing a bunch of poo bags on Boat and having surgery after even though that will screw up a bunch of other things I’m hoping to do (like work the first IndyCar race at COTA in some capacity).

And that’s where we are right now. I’ll get into this more later, maybe tomorrow.

Watch this space.

I was going to write something tonight to update everyone on what’s been going on, but I’ve had a really long work day and I’m kinda beat, so that’s not going to happen until tomorrow at the earliest. Instead, here’s the thing I posted to the Book of Face last night:

To absolutely no one’s surprise, I’m still cancerous. Everything is smaller or showing other signs of improvement, but there’s still stuff present.

To be honest, I knew this was likely from the beginning. So I’m not surprised, though I’ll admit to being a little disappointed.

This also marks a break point where I’m going to be transitioning to a new medical team, because I’ve now got a much better insurance situation, but unfortunately that means my current team is out of network. If things get weird, I’m going to bite the out-of-network bullet, but my current oncologist and surgeon have recommended people they know and trust, and in the case of my oncologist, someone he’s known basically since medical school.

I’m nervous about the transition — in an ideal world, I’d have the new insurance AND my docs would be in-network, which would be the best thing as I’ve got a great team already. But that’s not reality in the 2018 United States of America.

Right now, my plan is still to get the surgery sorted shortly after the first of the year, and then it looks like I’ll be resuming full-scale chemo, possibly with added bonus chemicals and maybe a full genome sequence (turns out what I had in the spring was looking only for some specific markers) to identify things that might be able to be targeted with new specific therapies. The exact timing and indeed the order of this will be sorted out with the new team, of course.

So I’m going to still be doing science for a while.

I’m getting better. It’s just taking longer than I’d hoped, but not longer than I expected. We’re going to kill this stuff.

Bell: Rung. Clapper: Well, I did fix it afterward.

clapperoffChemo #12 is in the books, done and dusted. As is something of a tradition in cancer infusion clinics, I rang the bell to signify I was done with my planned course of chemotherapy (well, at least the big ones).

The clapper came off. It wasn’t my fault (this will not be the only time Han Solo is quoted in this post): the clapper’s hanger hook was clearly opened up rather a lot more than originally planned by lots of other vigorous bell-ringers and thus it was ready to come off.

I did rehang it:

20181114_153647_15422400301541 (1)

Here you can see where the chemo caused hair loss, too.

At Kelsey-Seybold, it’s also somewhat traditional to play a song of celebration to go along with your bell-ringing. They’d never heard Frank Turner before. Well, they have now. I played “Get Better”, and the staff definitely noticed the line about “And the best people I know are looking out for me”. Which I meant.

But, you know, the universe likes to keep me humble. Which means I had the colostomy equivalent of the runs today, and indeed had to do a bag change in the bathroom at the infusion clinic before I got disconnected from the pump. To quote Han Solo again, this is the universe saying “Great, kid! Don’t get cocky!” (And here you thought there wouldn’t be any poop content here. Some of you were probably expecting to be disappointed by a lack of poop content. Well, rejoice.)

So, what’s next?

We’re going to Tulsa for Thanksgiving, and the wonderful Elyce is again looking after the house and the pups while we’re gone. She loves the dogs and they love her.

Then on the 27th, I’ve got appointments with my surgeon, my oncologist, and the post-chemo CT scan.

What happens after that is going to somewhat depend on the results of the scan. What I’m expecting is surgery to finally do the colon resection by removing the remains of the naughty bits of the colon along with associated lymph node remnants, and REVERSE THE COLOSTOMY. I expect this to happen after the first of the year. Gotta wait at least a month to be less-toxic enough for the surgeons to be comfortable opening me up, but then that leaves us just before Christmas again and we know how well that went last year, so I want to avoid it this time. It means another few weeks with the infernal bags, but I’d rather have all the A-team starters available once I’m done.

And then lower-level maintenance chemo, along with more scans and ‘scopes, for several (5 or more) years, to make sure it’s all dead and stays that way. The scans don’t have enough resolution to be able to determine that we got all the cancer cells dead, so this is the smart approach. There will probably be some other drugs to mitigate the side effects of the chemo, but that’s just how things work in this lovely modern age.

THANK YOUS

Oh, such a long list. Today, it’s all about the hard-working, ever-encouraging infusion clinic staff. Nurses, medical assistants, schedulers, pharmacists and pharmacy techs, lab techs, receptionists… everyone there busts their asses for their patients. Not everyone gets to ring the bell, but the staff treats everyone like they will, and like they’re the most important person in the clinic. This takes a very special mindset. I salute them.

My docs are great, as are their staffs. I’ve been very fortunate in how that all worked.

The nursing staff on the gastro surgical recovery floor at St. Luke’s. They were fantastic when I was at my lowest.

My family, especially my dad for basically dropping everything and spending months here to look after me, and my mom for holding down the fort in BA while he did. I’m fortunate to have a large, delightfully somewhat-unkempt extended family, and they’ve all been in my corner.

And of course, all of you reading this, and a bunch more who haven’t. Team Jim has kept me going when I wasn’t sure I really even wanted to keep going. Thanks to all of you.

I wouldn’t be here without Kim. She’s kept me waking up in the morning when I wasn’t sure I wanted to anymore. Even with all the crap she’s dealing with, she’s able to look after me. We’re both kinda broken, but that isn’t going to stop us.

I’m not done yet, but I’m hopefully past the Big Bad. The surgery will be non-trivial, but I’ve got a benchmark for that now, and I’m ready for it.

Onward!

So, where was I?

When we last left our hero cautionary tale, I’d had chemo #10 deferred due to low platelets. I got an Nplate shot that Thursday, and when I went in on Tuesday for chemo #10 Take 2, the platelet count had rebounded nicely and I got chemo #10 without any problems. Tuesday-Thursday that week. Side effects weren’t terrible, and I got another Nplate shot along with the Neulasta-equivalent on Thursday.

And then I fooled almost everyone.

On Saturday that week, Kim and I drove down to Austin, or more correctly Elroy and the Circuit of the Americas located therein, and thanks to the good graces of Race Chairman (Volunteer Staffing) Bill Armitage and (not sure of his title, but he’s in charge of the ACCUS, the sanctioning body and FIA representative) Tim Mayer, I was credentialed as an Assistant Flag Chief with tower and race control access. So I got to spend the day around RC, and made it back out to the worker tent at the end of the day to surprise some of my flagging friends who were not expecting me to be there. Kim, meanwhile, got a guest pass for admission and was able to meet up with Marcus & Jen Merideth, who were down from Michigan for the weekend to represent the SCCA Board of Directors (Marcus is the Area 4 member) for the F3 and F4 races, which are sanctioned by SCCA Pro Racing, and also her friend Kevin Ballard and his dad. So we both got to do something we really loved doing, and according to Bill, as far as he’s concerned, my 100% record for F1 at COTA is intact. I’ll just take his word for it, ’cause I don’t feel like I actually did anything but be a bit of a mascot, but hey, I’ll be back at it next time.

There were a handful of people besides Bill who knew I was coming, but they were sworn to secrecy. Everything is always a game-time decision right now, so I didn’t want to get a lot of hopes up in the event I couldn’t make it. The chemo schedule shift really threw a wrench into my plans, but my body seems to have understood my desire to make this thing happen and the side effects stayed minimal enough to make it happen. I paid for it on Sunday and even into Monday, but that’s okay.

It was just really good to get out and do a thing we love doing, take a little road trip (learned that I’m still not up for bigger trips, and I did pay for my efforts, but so totally worth it), see some race cars and, more importantly, race people, and that’s as good as I can hope for right now.

I’m always trying to push myself a little harder, a little farther, as I get better. The strength and stamina I lost when this all started is going to take a while to get back, but it won’t if I don’t push it.

And then I went to work for the week. That was normal. Normal is good.

And then chemo #11 happened this past week, as (re)scheduled. Platelets well into the butter zone, but still with the Nplate because we just want to be sure.

And yesterday, Kim and I went to Erin & Dani’s Halloween party — Kim managed the stairs, which if you don’t know, is a Big Deal and comes with a bit of a cost, but she was very motivated. And we got to see Chet & Erin (not the same Erin, but an equally awesome Erin) and Zack and Christine (I finally got to meet Christine in person). Turns out that Christine’s 2nd cousin is one of our dear Nerd Boat friends, Christina Diddle. The world is a weird place, and I wouldn’t have it any other way.

I’ve also spent a bit of time urging my friends and family to vote for people who won’t kill us. This cycle, that means basically zero candidates from the GOP. Anyone who’s voted to repeal the Affordable Care Act, or acted in their capacity to hobble its implementation, or is running on the promise of doing any of those things, basically wants me dead. Or bankrupt first, if I try to stay alive, and then dead when I run out of money.

And that goes for anyone who’s ever had, or has a blood relative who has/had, anything an insurance company considers a preexisting condition. I’m not just talking cancer or diabetes here. High cholesterol? Yep. Asthma? Yep. Sleep apnea? Yep. Torn meniscus? Yep. And you don’t even have to have one of those things yourself. If your uncle has diabetes, or your mother died of cancer (both of which are true in my case), into the high-risk pool for you, even though you yourself are perfectly healthy.

As it happens this election cycle, the people who have been working to gut/repeal the ACA are also complicit in a whole host of other reprehensible things (racism, sexism, homophobia, transphobia, wealthism, white nationalism, the embrace of brutal dictators while simultaneously angering and alienating our long-time allies, economic policies that only benefit the mega-wealthy, etc., etc., ad nauseum), so it’s not like there are a lot of redeeming qualities to counter all the awful stuff.

No, there aren’t perfect candidates on the other side. There never will be. The perfect candidate is a unicorn: a mythical beast. But at least there’s a group of people looking to work for all of us, not just the moneyed donor class.

I’d hope that you, who have chosen to read this, would rather I didn’t die that way, and have/will vote accordingly. We’ll still have a reprehensible excuse for a human being in the White House, but maybe we’ll have a Congress that does its job as a co-equal branch of government instead of catering to his ever-changing whims in exchange for his willingness to rubber-stamp their bad ideas.

So back to work this week. Chemo #12, which is the last planned Big Honkin’ Chemo, will be the week after. I plan to ring the shit out of that bell when I get disconnected, and the Kelsey-Seybold Cancer Center infusion clinic will be treated to some rollicking Frank Turner music for the occasion.

Kim and I have plane tickets for Thanksgiving in Tulsa. We normally drive, but neither one of us is up for the road trip this year.

And the Tuesday after Thanksgiving, I have appointments with the surgeon, the oncologist, and for a CT scan to show just how dead this shit is.

If the scan shows what we expect to see, it’ll be time to set up surgery to finally get rid of the naughty bit of my colon, now much more dead, complete the resection, reverse the colostomy, and THEN I can get into Reclaim The Rest Of My Life Mode.

It’s gonna take some work, of course, and it’ll be a haul, plus I’ll be on maintenance chemo and subject to frequent scans and colonoscopies and the like going forward, but the medical team is optimistic that I’ll get to the point where I’ll eventually, one day in the distant future, die from something completely unrelated to this colon cancer.

I can deal with that.

Life is, of course, full of surprises. Some of them are good, some of them are, well, pretty damn shitty. So there’s a chance things will go weird again. But we’ll deal with that as it comes. I’m much better equipped now than I was when this all started, for all my brave words to myself that I’d been expecting something like this to happen for most of my life and I was ready for it. I wasn’t.

I wasn’t prepared to be knocked lower than I’d ever been in my life. I wasn’t prepared to not bounce back relatively quickly, as I almost always have from illness and injury. I wasn’t prepared to stare my own death in the face, and as I’ve talked about before, I had a few times when getting my affairs in order and checking out seemed like the best option. I’m glad I didn’t follow that line of thinking to its inevitable conclusion, but I’d be lying if I didn’t acknowledge it was there.

This is the part where I remind you that I’ve done “couch time” with psychiatrists and psychologists on several occasions during my life, and I wouldn’t hesitate to go back to the couch again if I felt I needed it. Me being me, though, I tend to not only sort out my shit when I’m on the couch, but also learn the process as it works for me, and thus can self-treat fairly well. That said, I’m also the guy who says “if you don’t know, find a pro that does know” on a variety of subjects, and thus I will go back to the couch whenever I think I’m getting out of my depth. Everyone is different, your mileage may vary, and all that — and if you have a condition where your brain chemicals (something that you have no control over, so it’s emphatically not your fault) are the cause of the problems, you absolutely owe it to yourself to get to a psychiatrist who can properly diagnose you and prescribe the medications that will, with a bit of trial and error and adjustment, get those brain chemicals back in line. You, my friends, deserve that balance in your lives, and I hope you can find it.

I’m in a MUCH better place now. As bad as the effects of chemo are (remember, you’re getting poison injected into you with the general idea being it’s going to kill the bad stuff before it kills the rest of you), as much strength and stamina as I’ve lost, I’ve been able to get some of it back, been able to keep working enough to feel that I’m contributing and earning my keep, been able to reclaim more and more of my life “before cancer”, and that’s been a big help.

And what’s been an even bigger help has been all the family and friends who have stepped up. Just knowing all of your are pulling for me is the biggest boost I could ever hope for. I know there’s a lot of you still chomping at the bit to do something tangible, and opportunities to do so have been a little thin as we’re some of those wacky largely-self-sufficient types. You’re just gonna have to trust me that knowing I have all this backup, even if I don’t end up needing to invoke it, is a very tangible thing, and it’s the best feeling anyone could ever hope for.

And onward we go.

Stupid Spleen

Haven’t written in a while, which is my fault, I suppose, since this is my blog.

What’s been going on?

Well, I was supposed to get chemo #10 this week, but my platelets were low, so the oncologist decided to punt and wrote a scrip for Nplate, which is an injection designed to boost platelet production. Had to get insurance approval, which means it’s probably really expensive, and got the shot on Thursday.

Chemo has been rescheduled for this coming Tuesday, with the remaining two infusions also pushed back a week.

I am so pissed off at my asshole of a spleen right now. All the other organs got the memo that we’re trying to get through this shit on schedule — hell, even my hemoglobin (the problem I had during the spring set of infusions) is back into normal range — but apparently my spleen decided to opt out.

Stupid spleen.

Of course, we don’t discover this until we’re at the infusion center, my port has been accessed and purged, and then we have to unhook it and go home when the bloodwork comes back and the oncologist is consulted and the punt is decided.

On the plus side, I had no adverse reaction to the Nplate and that’s good as I’ll be getting it along with the “bio-equivalent to” Neulasta on disconnect day for the rest of the cycle. Now the big question will be whether I get doubled-up on the copay (I’m already paying for the Neulasta-like thing… so if I get the Nplate at the same time, is it the same appointment or is it a scrip, or??? I won’t know until it happens).

And I’m doing another 10-day set of the antibiotics. The area where Hellmouth 2 was (directly above the stoma) started to feel tight and sore again, an indication that my ongoing fun with fistulas (and the cancerous part of my sigmoid colon being slightly leaky) is still there. The surgeon (who’s managing that part of my care) and I had discussed this possibility and we’re executing the plan. I’d like to avoid having Hellmouth 2 reopen as it messes up with how I have to attach and seal the colostomy bag. So antibiotics to head that off at the pass.

On a more practical matter, pushing the chemos a week screwed up a lot of my schedule, which I’d planned around when I was going to be on the needle. So numerous rearrangements had to happen. Grrrr.

Stupid spleen.

And, worse, this pushes the “it’s been a month since your last chemo so we think you’re not too toxic to operate on” date back a week, which puts it dangerously close to the Christmas holidays, which means I probably don’t want to have said surgery until after the first of the year.

How do I know this? Because I had the first surgery on December 20th, and then my surgeon went on holiday and while the nursing staff was aces, not having my surgeon available to answer questions once I was coherent enough to ask them sucked, as his sub didn’t operate on me and had no info to give.

I don’t want to have the C Team again.

Further complicating that is insurance. Just got my info sheet with the changes for 2019 on my individual-market plan: premium goes up about $108/month (from $802 to $910), and the per-day copays for hospital stays go up non-trivially go up from $400/day to $600/day. CT/PET/MRI copays go from $300 to $500.

So I have a financial incentive to get it done this year… because changing insurance plans means having to change doctors as my current insurance is only good for Kelsey-Seybold and Kelsey-Seybold is out-of-network for every other individual-market insurance plan available in Texas.

Ah, but there’s some additional complications on the insurance front that I can’t really get into yet — rest assured they’re good complications — that I’m working on in the background with some assistance. When I have it sorted, I’ll explain, but right now I have reasons to keep it under wraps.

There’s a lot of open questions and balls in the air right now — one option will be a total easy button, but of course I have to plan on that not happening and have alternatives in place. A lot of it depends on timing. Any more delays will throw yet  more chaos into the mix, so that’s one reason I pushed to get the Nplate shot this week so my platelet numbers have a chance to rebound before next Tuesday’s infusion.

Outside of all that, I worked the rest of the week and will work on Monday, and that’s going well. Doing what I can to get hours in and contribute to the company that’s stood by me when they didn’t have to. Still trying to wrap my head around how they operate, as it’s so far out of my experience in the previous 28 years of my career, but that’s a good problem to have.

This weekend, I’ll be running the Texas Chairs for an assortment of flaggers from other parts of the country (and the world) up to Jim R’s place in The Woodlands as he’ll be heading to COTA on Thursday for the F1 weekend. Yes, I am the custodian for a bunch of chairs that my friends have bought for their use when they come to COTA for F1 and other big races. Just because I’m not working the event this year doesn’t mean the chairs get the year off. A fair number of those folks are in Georgia working the Petit Le Mans this weekend and will likely be coming from there to Austin.

In general, I’m doing okay. I’m mad at my spleen, obviously, and the schedule mess the spleen caused, but I’m doing okay. So far, the stoma and bag situation has stabilized as I’ve figured out better means of trimming the input hole in the bags and installation methods. I’m back to showering pretty much daily (except when I’m on the chemo pump – it’s not compatible with showering), which helps me feel human. And yes, I’d kinda gotten out of the habit after surgery. It was just too much at the time. So that’s more of my life reclaimed. The chemo side effects have been manageable, I’ve not yet gotten the big chemo brain problems, the PN is just kinda there (the antibiotics are making it a bit worse, but I knew that. It’s temporary and it’s better than having the Hellmouths re-open), and I’m about as functional on off-weeks as I was before restarting the chemo at the end of August. On-weeks, well, I’m partially useless for a day or two. But that’s far better than I was in the spring, and I’ll take the wins when I get them.

Stupid spleen.

Side Effects

So this isn’t about the direct side effects of the chemo, which are a known thing. This is about some of the other side effects all this has been having on my life.

There’s the big things: I’m not able to work full-time. I’m working as much as I can, and before I restarted chemo, I was building back up toward full-time, but getting back on the needle put paid to that for the time being. My client is still being amazingly accommodating of my situation and treating me as a valued part of their family (small companies are better for this than larger ones).

Related to that, the lack of stamina is frustrating. I’ve had to pace myself far more than I’m used to in order to avoid getting wiped out — if I push myself too much, I could lose entire days recovering. This, too, was getting better, but then chemo again, so not quite back to where I was the first time, but still being cautious. On the plus side, I’ve developed considerably more understanding of what Kim goes through with her psoriatic arthritis and MS combo. This is her life. And at least for now, maybe longer, it’s mine as well.

Don’t get me wrong: I’m looking at these things as goals to get back to, not things I’m going to be stuck with permanently.  But for now, they’re side effects.

There’s seemingly little things, too (they’re not really little, though): Callay is a bit of a daddy’s girl, and loves to climb all over me. This is a problem as she could easily dislodge the poo bag with her pointy little Westie feets, and she’s never quite content to just lay still on my lap or next to me — that’s McTavish the lap-lump. And days like today, when I’ve got the chemo pump attached and thus my right side is also occupied with gear that a little dog could dislodge – this with more toxic effects than just some poop – means I can’t really do much with her. And of course, on chemo, I smell weird and thus she’s very concerned about me and wants to be next to me a lot. She stayed up with me last night rather than retreat to the bedroom with Kim as usual – something I’ve noticed she’s done on the other chemo pump nights, too. I give her all the love I can, but she’s still, about 10 months into this thing, still kinda confused and hurt as to why dad won’t let her crawl all over him like he used to. Soon, little puppy. Soon(TM).

Bigger than Callay’s situation is Kim. We’re huggers (in Kim’s case, at least she is with me. She’s a highly selective hugger. This is okay, just how she’s wired), and with the poo bag, and with the chemo pump, I’m not really very huggable. I love her to pieces, and I miss being able to do that simple little act of affection more than anything. I’m seeing an end to this situation now, and that’s good, but it also kinda makes me miss it all that much more. On top of that, I’m kinda toxic, literally, when I’m on chemo, and her immune system is really angry with her, so that’s an additional danger I’d rather avoid (the cancer center provided us a spill kit — not to protect *me*, because they’re injecting this stuff into me on purpose, but to protect anyone else who has to clean up in the event of, say, the dog ripping the tubing loose. I’ve managed to avoid that so far (knocks on the thick wooden melon on top of my neck), but until I’m done with it, it’s something to be aware of.

We’re both broken a little bit, in different ways, but we work well together, and I don’t know that I could have made it through this as well as I have so far without her. She’s a big reason I’ve been able to get through those trips to the dark place and why I haven’t been back there in what seems like a long time now.

Again, Soon(TM). They’ve scheduled the last 3 infusions. We’ll get the surgery scheduled. There’s a path to the end of this tunnel. I see the exit – there’s sky, and clouds, and ground, and rails, and it’s not a train honking its horn at us.

It’s going to get better. The side effects won’t last.