October’s Good, Bad, and Ugly

Happy Fall Y’All!  Apologies for the basic white girl opening.  But ‘tis the season! (Is there a name for mixing holiday catchphrases?!).  I was telling my students in Journal Club the other day how I bought a stencil to make a craft that says “Fall is my second favorite four letter F word”.  Hey,  I never said I was professional all the time, right?  Well, I never made the craft, as my craft eyes are often bigger than my stomach…hands?  Ok, time to drop the idiom-speak.  Anywho, it’s fall, which I like the cooler temps, the pretty trees…until it turns into Midwest winter, which is mostly just grey and brown.  Grey skies.  Brown trees.  I’ll miss that color.  As the month comes to a close, I’ll take a break from scrolling FB and seeing Halloween costumes to provide a bit of an update.

The Good

The Good of October was mostly in the early parts, as I escaped to California for a couple of weeks.  While I’m on sabbatical, I’m still ‘working’, mostly on research and then on some selected service-related responsibilities that are important to me.  My teaching and advising has been put on pause, which while I miss my students and those connections, is pretty great, and generates a lot less email.  So with some things still being remote, I figured I could afford to hop a few time zones over and visit family, celebrate birthdays, and otherwise enjoy a bit of an escape.

After I arrived, I remembered why time zones suck when I had a 5 am meeting the next morning, but despite a couple early wake ups, it was a grand time.  My sister and fam are so generous, my mom was there for a bit, my brother-in-laws parents, the weather was pretty great, the accommodations stellar, and even got to meet up with some FD friends that weren’t too far away.  Add in my niece’s dominating in doubles on the tennis court, birthday celebrations, bike rides, fun food and it was definitely a good time.

 

I came back to a Riley Cat that missed me (though she was VERY well taken care of by her new friends that checked on her), research projects ready to roll, and much cheaper gas prices.  I generally go to the office most days, but have some flexibility as well.  I may still be “bad at sabbatical” as my sister told me (and I agree with), but I’m learning to find a better balance.

The Bad

One of the things I came home to was my 3-mo scans, checking in on the latest chemo treatment (Doxil, aka doxorubicin/red devil, but coated so it’s a bit easier to tolerate) that I’ve been getting.  My new place is near a large hospital in my preferred network, so scans got scheduled there, both a bone scan and CT.  For the nuclear bone scans, you have to get injected with the radioactive dye and wait a few hours, then return for that scan.  They were able to complete my CT scan when I was there for the injection, before I’d head back.  In the in between time, rather than work, I watched TV back at the house, as I was having a normal level of scanxiety that I’ve grown pretty accustomed to.  While laying on the bone scan table (they wrap you up kinda like a burrito, and while some might find it claustrophobic, I actually really like it and almost fell asleep), I thought to myself, “maybe the CT will result while I’m being scanned”.  The tech finished, I grabbed my phone and saw the notification that a new result had posted to MyChart.  

Wanting to maintain some level of privacy, I resisted the urge to immediately check it and waited till the car.

Fuck.  Fuckity fuck.  God damnit.  Text the family.  Text a few friends.  Wait till Mom has likely read it and then call her. I wouldn’t be meeting with my doc until Friday (this was on Tuesday), so some time to process.

Thanks Mom, for reminding me, it’s not that it isn’t working at all (if I wasn’t poisoning my body for the past year, who knows where I’d be today!) just not as well as we would like.  Stable would be sufficient.  Regression is preferred.  But progression?!  In size AND number.  Fuck.

I threw a bit of a pity party for myself the rest of the day.  Wednesday was a busy work day, which was probably good to keep me occupied.  Thursday I had to take my car in for maintenance and spent the morning on clinicaltrials.gov.  I hate to say the phrase “I did my own research” in These Times (TM), but I did.  I searched by keyword (~230), I screened by title/intervention (~60), I dove into inclusion/exclusion criteria (6).  I looked at what standard treatments there might be.  I reviewed what I’ve already done (it’s a lot so it’s easy to forget!).  

I made is less personal, more clinical.  I coped, in the way that I do.  Well, if my initial “I’ll have 3 good years” was correct, I’m about on that track right now!  I sent a couple friends the actual pictures…they’re visual like me.  I had asked for my scans last time because of this..I wanted to see these fuckers.

That’s July, so more and bigger (the light spots, these are one slice of the CT) since then.  They are still relatively small, hence why I’m not symptomatic.  The bone scan resulted on Thursday…while the sternum is stable, there’s maybe a new small spot on a rib.  Bigger fish to fry.  I had a well-timed therapy appointment Thursday afternoon where I could basically review what I have here.

A few days to sit with it till I would see my doc, make a plan…which brings us to…

The Ugly

The Ugly is the unknown.  The Ugly is a plan in progress, but no real answers.  The Ugly is seeing on your doc’s face, genuine frustration.  The Ugly is wishing there was a next best step.  The Ugly is the look from the chemo nurse when you say you’re not getting treatment today and she’s smart enough to know it’s because it’s not working.

I arrived at the appointment and asked if I needed to get blood drawn, if they should put an IV in, because I figured we’d cancel treatment.  As the medical assistant relayed this to the doc, he replied “oh, so she already knows”.  Of course I do.  So we got to chat, chat about what we’ve done, what could be next.  There’s a few remaining chemo lines that could be tried as single agents (the ones I had looked into, noted as next steps).  We could rebiopsy but doesn’t seem necessary right now.  before the appointment I had decided I wanted to get referred up to OSUs Cancer Center….remember those 6 trials I might qualify for? One is at OSU.  

A trial isn’t necessarily the answer, but since the regular big guns aren’t working well enough, the more targeted/specific drugs that are in development may be the way to go.  A friend who had consulted with OSU had good things to say.  My doc, as always, was supportive.  He understood why I’d rather do that than Indiana (a 2.5 hr round trip vs 4 would be nice), but was still going to call and consult with the Indiana doc (will call me back next week). 

 I’ll try to have a plan by Thanksgiving, figure out what and where I want to do the next thing.  A break for a bit (though not from the continued monthly hormone treatment and injection to support my bones).  I’m not looking forward to the appointments, the new docs, paperwork, processes etc.  Should be easier since they are on the same electronic medical record system, but still takes some work.  And yet, I’m grateful I have a super flexible schedule right now, good insurance coverage (just did open enrollment, yes I will be maxing out my FSA again in anticipation of probably reaching my max out of pocket and that gets me a good chunk of the way there), the capacity to have major med centers relatively close, reliable transportation, and that I’m feeling well enough to do these things.  

After this kind of news, people ask how I’m doing.  It’s such a tough question.  I’m fine?  I’m sad? I’m pissed?  I’m glad I can understand all this shit?  I’m grateful?  I don’t know.  I just sort of am.  I know I shouldn’t eat my feelings, and yet I do.  I take time to veg, but I uphold my responsibilities.  I can distract myself with work.  I cuddle my cat.  I am continuing on.  Continuing to “fight” in as much as fighting means letting the years of science and millions of dollars of research hopefully extend the good days.  I am glad October and all the breast cancer attention is almost over.  

I wish I knew what the future would hold. When the first appointment will be, what the treatment will be, how will I feel, how will it affect me? The unknown is the ugly.  So rather than even planning 3 months ahead right now I’m basically planning 3 days.  That trip to Florida to do a Disney run and visit a good friend that’s scheduled next week?  Sure…for now…. 

I’ll post updates as I can, but may wait till there’s actually something to say, till I know a bit more.  Till then, to end on a less serious-note, in my vegging and pity partying I’ve watched a lot of TV lately, some recommendations/comments, beyond Squid Game (which was fine)….

Salvage Kings - Canadian demolition company that salvages stuff and sells it.  Why am I so intrigued by watching Canadian men work?! (Remember Big Timber?!).  Netflix.

Dopesick - Hulu original.  Tough to watch, especially coming from a place the opioid epidemic hit hard.  But well done…probably a good thing it comes out weekly so you can’t binge all at once.

Babysitter’s Club - Netflix.  I wasn’t a big fan of the books (Boxcar children was my jam and I was too much of a tomboy to get into these).  This show is great.  Progressive.  Clean.  Pure.  Great escapism.  

Clickbait - Netflix.  Maybe it’s because I never watch Entourage, but I can’t see Adrian whatshisface and not just constantly picture him with Sabrina the Teenage Witch née Clarissa Explains it All, in Drive Me Crazy.  God the 2000s were the golden age of terrible teenage movies.  (Speaking of, the He’s All That reboot, eh, it was fine).

Baking Impossible - Netflix.  This one we actually found and watched in Cali.  Good stuff, competition show of bakers and engineers…except the phrase “bakineer” is lame. 

The Movies that Made Us - Netflix.  I like the behind the scenes look, even if it generally doesn’t include the main star.  Fun facts about Coming to America?  Pretty Woman?  Back to the Future?  Yes please.

And there’s a new season of Below Deck! It’s the little things you guys…