Productive Procrastination - Updates

 I like to productively procrastinate...in other words, to do something that feels 'productive' in order to avoid something else that I should be doing.  

What should I be doing?  The grading I came to the office to do.  I'm behind (which pretty much every academic says and in reality, I'm probably ahead of others, but I'm behind my standard).  Why? Well, honestly, grades seem a little silly during a pandemic as our students are balancing everything they are.  I do it because I have to, and it gives them some sort of benchmark for their work.  Frankly, I'd rather just say, give yourself the grade you deserve.  And yes, to my pedagogical savvy friends, I know this is a way to assess and whatnot but let's be honest, I'm not shifting that drastically right now.

What am I going to do instead?  Well, provide an update (of sorts), probably dump a little, and hopefully also remember why I really did enjoy blogging 'first time around'.  

It's been about 4 months since I last posted.  Classes started.  Online to begin while our numbers spiked, but we're back to some face-face blended courses now.  I'm teaching face-face as my risk isn't that elevated and believe in the protective measures we have in place (distancing in classes, masks required everywhere, etc.).  But COVID is still very real and a black cloud above my head on any given day...just like most others.  This past Friday was a harsh reminder of that...

• My campus community was informed of a student who died, likely from COVID complications.  There are tons of questions (when did he get it?  here? what happened when he left? did he have preexisting conditions?) that are, quite frankly, not really the business of most people.  Particularly the asshole folks who nearly immediately turned the loss into a talking point regarding the strategy the university has taken rather than taking it as the reminder that we are still in the thick of a deadly disease, that doesn't limit the nasty effects to only the old. And that hundreds of thousands of other Americans have suffered the same fate, and families and loved ones are suffering.  Oh, and if we're going to lay blame, perhaps it could be on those that failed to provide a coordinated national strategy to combat the pandemic.

Soapbox Moment: Have you voted yet? Was it for Biden and dems pretty much down the ticket?  If so, great.  Thanks.  Appreciate it.  If it was for Trump and "republicans" and you know me, we should probably have a conversation about why we are friends, as we may have very different values and may need to reevaluate our friendship.  Go Vote.  Vote Blue.  

• I had about 12 advising appointments with students Friday.  I bitch about these appointments and they are A LOT of work (~45 hrs worth this semester...when I couldn't stand creating more unrest by switching things around for some students, coming off of a higher advising load while interim chair).  But, I really do enjoy getting to connect with students 1-1.  What do I not enjoy?
• Hearing the tears of the student that is really struggling with the pandemic.
• Hearing about an inability to get transcripts released, needed for graduation, because of financial difficulties due to job loss due to COVID.
• Hearing students politely explain the difficulties of disorganized, disengaged professors (unfortunately, there are a few)
• There was quite a bit of other "B" (remember my ABC's?) related to work nonsense (even just Friday!).  I haven't done as good of a job in avoiding the B.  I've taken a stand on a couple things, but let's be honest, it's a little unavoidable in a modern-day workplace, right?  Serious shout out to the people in the know who listen to my ranks, serve as sounding boards, and help with this.  You know who you are, and I'm eternally grateful.

All of the bullshit of Friday came after I went in for a quick CT scan that morning.  Apparently, I had the date wrong, but grateful they were able to squeeze me in anyways.  Why was I getting the CT?  Well, let's lead into the medical update portion of the post... 

In June, I told you I was on Palbociclib/Ibrance, the drug I had done in clinical trials, along with Faslodex/Fulvestrant.  Ibrance is in the CDK4-6 inhibitor category of drugs that has been a relatively major 'breakthrough' in metastatic cancer treatments.  If you want more info, this hour plus presentation is pretty good (and yes, I'm a weirdo that watches shit like this, along with chiropractic videos (I've moved on from pimple popping) to fall asleep at night).  

In July, we re scanned to see how I was responding to this first-line, hormone/targeted therapy. And...

Whomp, whomp.  

 Damn.  Well, ok.  I had a telemedicine call with my doc (talk about being in my comfort zone! On multiple screens, with my own research on next steps pulled up. I loved it!). And we discussed what the next steps would be...

1. Get a biopsy of the lung metastases to confirm they are the same tumor type (Estrogen receptor positive, HER2 negative) and get a sample to be sent for further genetic testing.

WHY SCIENCE IS COOL SIDENOTE: The amount of information we have on genetic markers and subtypes of tumors now compared to when I had my surgery in 2015 is incredible.  Science is cool.  It works.  But it also needs funding.  Did I mention you should vote for people who believe in science/aka not Drumpf? 

       2.  Assuming that the lung biopsy wouldn't change much, and the other hormone therapy that I could potentially be likely respond to (mTOR/PI3K inhibitors) have some pretty nasty side effects, including basically making you a diabetic.   And, clinical practice guidelines (which of course I have looked up) dictate that after 2 different hormone therapies have failed (aka you've had progression on them) you move on the chemotherapies (essentially drugs that are less discriminatory on the cells that they kill and/or target general cell growth vs targeted aspects of the cancer cell and what feeds it).  So we moved my meds to Xeloda/capacetibine an oral chemo med.  

So, I started taking this med (weekly on, week off, main side effect to worry about it diarrhea and happy to report with TMI I haven't suffered that and haven't had to move to a BRAT diet, which would probably make me a brat...). 

The lung biopsy on July 20 went well enough.  Actually seeing the CT images of my lungs with all those nodules (yes, I also fall asleep to radiology lectures on how to read CTs, and the process of a lung biopsy is basically, stick the needle in, take a picture/CT to make sure you're on the right track, push it further, take another picture....so there were lots of pictures to look at) kind of made it all feel a bit more 'real' (remember I'm still basically asymptomatic!).  

 

Masked up in the hospital for my lung biopsy in July.

And the fancy genetic testing that reported in August, didn't really change much...tumor is still ER+, HER2- and there weren't many "clinically actionable" other markers (at least that we hadn't already gone after...AKA the CDK4-6).   If anything in the plethora of results there is some suggestion that yeah, it's a nasty tumor with cells that likes to survive.

So I kept taking my Xeloda, (side benefit it decreased my monthly shots to 3 sticks vs 5 since I got to drop the Faslodex), and going in and September had a bit of positivity with a down tick in my CA27-29 marker...

 

'Bend that curve!" 

But, in my ever-realistic way, would wait for imaging before I got too excited.  Bringing us back to Friday, the morning CT before the shit-ass day.  I of course checked my online chart all day long, feeling like it wasn't going to be good news.  Not totally just scanxiety, but have had some pains that may be symptoms??? So hard to know what is real, what's just being human, and what's all in my head.  

Saturday got a notification of a "New Test Result".

 

I want the details! 

Man, I really wish the full report would show up.  How much of an increase?  How much worse is worsening? Yeah, yeah, stable sternum bullshit, whatever. The lung mets are more concerning anyways.

And that's where I'm at, and what I know.  Right now at least.

So what's next?

• The full report will post, I'll play internet doctor and read it.
• I'll talk to my oncologist, either at my Nov 4 appointment or sooner.
• I'll probably ask to consult with the breast specialist at IU I saw last time around (my onc already has since my recurrence).  I may ask about going up to Ohio State and The James, particularly since there are some clinical trials there (in phase 1 and 2) I think I may qualify for.
• We'll likely change the treatment approach...BECAUSE THAT'S WHAT FUCKING METASTATIC DISEASE IS.  Try it, hope it works, when it doesn't, move on.
• I think the next step may be infusion-based chemo.  In which case, given the current timing, I may have to make some decisions.  I've decided to spend Thanksgiving-January not in Dayton (thanks to my former student for house/cat sitting and remote classes to enable this).  I'm excited to see my family, be places where the sun shines more often (CA, CO, AZ) and focus on myself and health for a bit (thanks to Lex for convincing me to sign up to run a half marathon in January in AZ...).  If I have to move to infusions, I may wait till the new year if it doesn't seem like it'll be detrimental.
• I will probably have to actually face some realities at some point sooner rather than later about the balance of treatment benefit vs costs.  Costs of side effects on quality of life, costs of time, and for the benefit of months.  It's a shit place to be.

I need more info.  It'll come, but I'm not a patient person.  Case in point, I recently binged Game of Thrones (upon the suggestion of some of the same folks keeping me sane at work).  I had to wait a few days because we planned to watch an episode together...it was painful to wait! And then I finished the rest of the show (3 more eps) that night.  Glad I have increased by pop culture understanding.

So I'm waiting.  And continue to take the Xeloda (singing 'Poison' in my head each time I do).

 

Maybe I should start dancing while taking my meds too.

 

I'll update after I find out more.  Because people are awesome, I'm sure there are many asking 'what can I do'?  Again, vote for people who care about science and protecting pre-existing conditions (because you know, without my healthcare, which is actually only up to about 100K this year, I'd be screwed), and in general aren't trash human beings.  

 

Also, you can support organizations like Metavivor that are fighting for "more for stage iv", given that research on metastatic breast cancer is funded much less than earlier-stage disease.  For more info on that, check out this video that I sent in a photo for.

For me personally, there isn't much to do right now.  I'm still feeling like a regular person, still capable of doing all of the things of adulting that need to be done.  In fact, I have had quite a bit of fun in the past few months too while apparently the cells that are going to kill me have been just as stubborn as I am and continued to grow.  I'll end it with some photos of the good times (I CAN manage a little optimism at times), hoping for more good times ahead.  

 

Erica and I put a deposit on a June trip to Africa to gorilla trek and safari (Yes to Adventures!).  Our tour operator sends updates on Whatsapp, like new gorilla babies and it definitely helps! 

 

 

Celebrated my 35th (I wrote this as 30th till I was corrected...WTF)  birthday in Shawnee State Park backpacking for 2 nights, ~22 miles with Diana.  I cursed (literally) my lung nodules climbing beautiful rolling hills.

 

I bought a couple kayaks and spent many days in the summer and fall enjoying the water, including locally on Great Miami River, at the same place my rowing team practices.   

 

I finally got a haircut!  COVID sucks, wear your god damn mask people. 

 

My custom metastatic ribbon colored bracelets finally arrived.  If you want one, let me know.

Riley and I continue to be friends.  I appreciate her increased proclivity for snuggles. 

 

We got this sweet new virtual anatomy table that I've used for outreach and done interviews (on days I didn't brush my hair) for. 

Speaking of interviews, if you want to listen to me talk about cancer, food, running, and using pause words like 'so' 'like' and 'you know' more than I'd like to admit, check out this interview my friend Elizabeth did of me.

And to really finish things off, my mom sent a link to this to me the other day, and I think it really sums my feelings pretty damn well.