It Doesn't Happen Sitting Across a Desk

Receiving the news doesn't happen sitting across a desk from a physician.  It's not like in the movies and tv.  For me, it "happened" in the middle of a Zoom meeting (more on THAT later).  A phonecall, one I answered, thinking it was about an upcoming appointment. 

I received the news that I have stage IV metastatic disease, standing alone in my living room, on the phone. In the middle of a global pandemic.

So, let's rewind a bit...

Last time I posted (August '19), I was celebrating a 5 year cancerversary.  "Cancerversaries" are an interesting thing...is it from diagnosis? From the first treatment? The last? When you're medically declared in "remission" or with "no evidence of disease"?  Ha, apparently, even though it's a trademarked term, my impression is there isn't strong consensus.  For me, it's been from the date of diagnosis, when "it" (I hate that god damn journey word, so a pronoun will have to do) all began.  August 15, 2014.  With that in mind, seven months ago, I was celebrating making it past that point. 

Post-Hoc Edit: The next paragraphs and photos review Fall 2019, which until writing this, I probably didn't realize how epic it was.  What a great few months!  Maybe everyone should backtrack in their calendar every once in awhile to spark gratitude for what they've done!  If you're easily made jealous, maybe skip ahead.

I started the semester, as Interim Chair, in my new office with windows (seriously, to steal my provost's favorite word, I cannot underscore enough the importance of office windows).  I had some adventures, meeting college roommates in St. Louis (semi-central to Kansas City, Chicago, and Dayton, where we all live) for a trip to the zoo and needed reconnecting. 

I spent a weekend rafting the Gauley River with my dear friend Erica.  We dumped on a rapid and I    had a pretty ridiculous swim through a Class V rapid.  Our awesome guide Wiik said "you've survived some shit, huh?".  Yessir. 



I finally climbed in The Red with our local First Descents group...seeing some old friends and meeting new ones. 






I participated in my first rowing regatta after joining an adult crew team.  I had an epic Halloween costume (for those that know UD's legends). Kept playing some tennis.  Was a "cover girl' for the first time and admitted my singledom. 

Spent Thanksgiving in Chicago with Mom and 'Tucci and saw a cool Cirque du Solei holiday show. Finished the semester and peaced out to Colorado (via Arizona to drive up with Mom...and yes, sometimes academics do debate a single word in a policy for 10 minutes Mom...). 





Spent an amazing Christmas at The Dirty Boot in Glad Park with the whole family.  It was awesome.  The place, the people.  Other than the Flyer Men's Basketball team losing a heartbreaker to Colorado (surely didn't think then it'd be their final loss of the entire season), expectations were only exceeded!  I took the California Zephyr train across the mountains to Denver for another few days with friends from all periods of life...high school, college, and grad school.  I loved it all so much that I really did come home and submit multiple job applications to get back out that way. 

     


I wasn't home for long when in January, I met up with some of my high school friends, the WU crew in Phoenix.  Celebrating weddings and 2 pregnancies! 

At some point along the way I decided I wanted to run a marathon.  If you remember, it was when I was training for the Twin Cities Marathon in 2014 that I was first diagnosed.  I. SHOULD. HAVE. KNOWN.  I signed up for "The Pig", first week in May, good timing.  So I ran more, even at altitude! Training to try to accomplish the feat...which I sort of regretted not doing in celebration of the 5 year anniversary, so said "Before I'm 35!".  I also needed a fitness goal, as the role of chair was hard for me to balance with staying healthy, active, eating at home, etc, and had put on weight.  January and February brought fewer adventures, though did a lot of watching basketball and returned to St. Louis as part of an enrollment trip to recruit future flyers. And then came March.

                                         

March 2020.  I think we will all remember this month.  We are all living in the COVID-19 pandemic, so no need to go through the details, show the charts, etc.  The days felt like weeks at times.  Coming off of February, I was a bit of a mad woman, running from meeting to meeting, scheduling calendar appointments, and sort of operating one day at a time.  I had planned a chilled out trip to DC to visit my friend and escape to the woods in Shenandoah for a weekend to start Spring Break.  I needed the break.  March 9, things started to escalate in Ohio, schools began to send students home and it was only a matter of time before UD did the same.  The decision was made and announced late on 3/10.  We all knew things were changing, but there's no way I could have known by just how much.

I don't think I even noticed my appointment with my oncologist scheduled for Wednesday March 12th until probably the day before...when we in full-on crisis management mode.  I arrived at the appointment, knowing that they'd want extra precautions for hand sanitizing, and grateful they were calling to screen for fever, coughing and other Corona symptoms.  I assumed we'd talk about Dayton basketball, which sadly was coming to an early end as the NCAA tournament (for which we were a 1 seed! With the best player in basketball! With national championship aspirations!) was cancelled. 

After getting labs drawn (a regular occurence) and him entering the room, he mentioned that my Cancer Antigen marker had been high at the last visit 3 months back. If it was high again, he'd order a PET scan, which insurance would probably deny for a CT and nuclear Bone Scan.    This was the same marker that had been slowly rising above normal levels, but hadn't gotten that high.  Last May, given the slight increase and some tenderness in my chest/sternum area, I had gotten a Bone Scan (I referred to that scanxiety a bit in my anniversary post) which came back clean. 

Not the exponential growth of all the COVID graphs, but still, not a great trendline there.

I think my body must have known something was off, as I wasn't that surprised when I got the call the marker had continued to rise and the tests were ordered.  The next week, our Spring "Break", I continued crisis management mode, donated blood, and oversaw the transition to a work from home mode.  I tried to be my own advocate and wanting a PET (I've never actually had one), even after denied by insurance, again, preparing for the worst and wanting all the info.  I was also a bit concerned that the progressing pandemic would slow down any diagnostic procedures, as many elective things were getting cancelled.  Both a good and a bad thing the tests were ordered ASAP and I had the CT scheduled for the afternoon of the 24th, and the bone scan for the 27th.  Luckily, since we were working from home, it was fairly easy to manage scheduling.

I'm not sure if my anxiety was from the impending scan, the isolation, the pandemic, the fact I was fasting or what.  I broke down on a call with my boss, which is SO unlike me, but happens I think when you're lucky enough to also be friends with your bosses.  I was afraid they would see my red eyes at the doctor and think I was sick and not let me in!

I hosted a Zoom meeting checkin with my department from my car on the 24th, parked outside the oncologist's office, in advance of the CT.  While drinking contrast, I Marco Polo'd (side note: is there a name for that? The making of something into a verb that isn't one?  Also, the number of communication tools we have is pretty crazy).  One of my best friends had her baby...5 weeks early!  Huh, that sounds familiar kind of like the marathon thing...

And now we're caught up.

To the living room.  To standing up to answer the call, during yet another Zoom meeting, this time our School of Education and Health Sciences leadership team. 
"Hi Anne, it's Mark Romer"
"Oh, hi Mark (WTF I never call him by his first name...sign 1 I was not myself)"
"So the CT came back and...."

And of course I can't provide a word by word account of what all was said.  I mean there's a literal physiological explanation in that when we are stressed, panicked, we divert blood away from the cognitive portions of our brain and to those that support the things necessary for life...the muscles to stand, the lungs to breathe, the heart to pump. 

"So I want to see you at 9 in the office tomorrow, ok? I'm going to call Kathy Miller at IU, she needs to know anyway but I think that's what we're going to do."
"Uh, yeah, ok".

And I walked back to my office to rejoin the call.  I sat down.  Looked up at the Brady Bunch tiles of faces realizing that amidst all of the uncertainty and change we were talking about academically, my life had just changed, had become uncertain.

I sent my family a text during the meeting (the benefit of Zoom is that it is much easy to multitask...oops).  Yes,  there was cause for concern.  For worry.  I'd know more the next day after talking to the doc.  For now, there were spots in the lungs, and on the sternum.  Cancer was back.  It had spread.  The Bone Scan would be positive.

I had another brief meeting scheduled with my boss later.  I shared the news (what little I had), saying that the news made it easy to say I wasn't going to continue as chair.  Silver Lining...at least it made that decision easier?!

The radiology report was uploaded some time that afternoon.  "Innumerable nodules throughout the lungs involving all lobes".  The word innumerable used to be cool....used to be.

I spent the night, of course not sleeping well and rather looking up the papers and research. Survival rates.  Treatment regimens.  Not a good sign when the x axes of the graphs you're looking at are in MONTHS not YEARS.  Fuck.  This shit is serious.  Ok, here's one...same cancer type, same location of lesions...what's it say? God damnit, these months.  This is like when people say their kid is 17 months or whatever...years people!  I was told there would be no math!  Ok, so like 3 years....38 months...is this survival or progress of disease?  How new is this paper?  Is it the latest treatment? Yes, ok, good.

That mess is how my brain works.  That god I'm fast reader I guess.

The next day I arrive, now they are taking temps at the door in addition to hand sanitizer and verbal screening.  Tape of the floor for social distancing space.  I'm called back (who is this medical assistant? Weird, first time ever).  He comes in with a solemn look. 

"I'd rather be here talking about us playing in the tournament right now"
"I know...well, I have to say, I'm not really surprised, just kind of heartbroken"

Like they say in Hamilton..."the room where it happens".  Note the lack of a desk to sit across from the doc at.  At least I got to keep my shirt on.

Thanks doc.  Me too.  We chat.  He explains the new care plan.  I'm going back on Ibrance the drug that I did the trial for at Indiana University first time around.  It's dramatically changed how we treat metastatic disease, tripling time to progression! (Yes, I saw that...1 year to 3...)Yes, it does bring white counts down, no, that doesn't really increase COVID risk...keep practicing good hygeine anyways.  Yes, there are a lot of nodes, but the biggest one is pretty small (1.5 cm).  We'll give the Ibrance in combination with Faslodex.  He proceeds to give me a really dumbed down explanation (of course I had already looked it up, it's a receptor antagonist), but I patiently sit through his lock and key analogy, empathizing that yes, it sucks for me to hear this, but it clearly also sucks for him to say it.  So yes, he gets to stick to his standard explanation.  I do that too sometimes.  We all like our comfort zones during stress.  The faslodex replaces the exemestane I was taking which was just trying to starve the cancer cells (eliminate estrogen for them to 'eat').  Oh and yeah, since it's also in bone, another one to help with that too.  Xgeva injections. Prevents bone breaks, and after I look up the mechanism (binds to RANK ligand) can also help to slow down the progress in bones. 

"People live for many years on this treatment"
"Uh, yeah, you're going to have to be more specific than many.  I saw survival of 3 years, is that too much doom and gloom?"
"Yeah, that's a bit doom and gloom".

Ok fine.  It's more like 5 for survival.  3 for progress of disease.  I'll write more on metastatic cancer later I'm sure, but here's the punchline.

THERE IS NO CURE FOR METASTATIC BREAST CANCER.

The game is find a drug that works and take it until it doesn't.  Then try something else.  And keep repeating until the effects of the drugs are worse than the effects of the disease, and it over takes you...your bones, your lungs, your liver or your brain...whichever it is, or combination of, they're all pretty damn important to sustaining life. 

So we'll start here, hope this works to stabilize, or maybe I'll be that lucky 10% that see regression, and rescan in 3 months.  Yes, it's probably the same cancer (estrogen and progesterone positive, HER2 negative).  We could check but the risk of a needle lung biopsy aren't worth it.

"If if looks like a duck and quacks like a duck..."

As I stand at the pharmacy to check on how I'll get the new drug he says:

"I want to give you a hug, but you know..."

I chuckle. Out loud I say "thanks".  In my head I say "fuck you COVID and social distancing".

I go home for more Zoom meetings. A good conversation with my sister.  Some emails and texts.  God damnit.  I meet up with a colleague (at a safe distance) for a run.  We chit chat.  We're about at the end of the "out" of our "out and back" walk/jog (oh, PS, when the pandemic postponed the marathon I had already decided to screw training, so that was great) and I share the news.  God it sucks telling people.  And yet, it's also a little cathartic for me. This time it seems different because there's less to tell, and so much remains unknown...how things progress, how I respond.  I'm planning on it not affecting me much, in the day to day, but I don't KNOW that. 

#ZoomLife

Another fairly sleepless night.  But as I summarized to me family in a morning email the next day: I am plowing through stages of grief.  I ordered custom bracelets in the colors of metastatic disease.  Ordered books and downloaded podcasts.  Started thinking about a bucket list...where do I want to go (Africa! Safari! National Parks!), what do I want to do (live! have fun!), what I don't want to do (stupid shit).  At some point in that day I believe I came up with my new official motto...trying to keep things basic and stick to the ABCs

Adventures? Yes.

Bullshit? No.

Cancer? Fuck off.

Focus on what I like, avoid what I don't, and don't let this new diagnosis define me or be my singular focus. 

As I sat on another zoom call in the waiting room prior to getting my radioactive injection for the bone scan, I dealt with a lot of the "B", over-discussing and over-complicating an issue.  Less of that. 

Work from home life. Go UD.

The doc was right, the bone scan was positive. It confirmed the metastasis in the sternum, but fortunately, no other bone sites.  Information in hand, the next 2 weeks have been arranging for the new drugs to be delivered (proprietary/specialty drugs are hella expensive folks).  Talk about a strong reminder to be grateful for my secure employment and insurance.  Shit.  Thankfully I already had an appointment with my therapist on the calendar.  Good to process with her too.

This past week, I started incorporating Just Dance breaks on my switch into the WFH routine.  Highly recommend.  I won't post those videos and if my nieces ever do, they're in trouble!  Unfortunately, that's been the small bits of levity among a lot of serious business and stress.  COVID-induced financial difficulties for the university, sharing my diagnosis with my department (the good thing about Zoom and being a host is that you can "End Meeting for All" to virtually run away when you want to avoid the uncomfortable conversations).  Sharing with other colleagues through email and text.  I am INCREDIBLY GRATEFUL for the support.  From those closest to me and those I'm not even that close to.  Don't worry about not knowing what to say people...there is nothing to really say.  So say the things you normally would.

Wednesday was the first round of injections.  I joked that I could have been a practical exam for a nursing student:

1 antecubital blood draw

1 subq injection (from vial, self assemble syringe/needle) in back of arm

1 injectable, sub q in belly, 16g needle (that one ain't fun)

2 intragluteal injections, premixed syringes, one in each cheek, high viscosity, slow infusion

They have all been pretty well-tolerated thus far. So, other than feeling like a bit of a pin cushion, nothing extraordinary to report from that (though we now moved up to wearing masks there of course).  

I'm not sure with what frequency I'll post.  There's a bit less of the day by day to update on, though I do find it helpful in my own processing to put the proverbial pen to paper.  In fact, I've said that the additional space and time of sheltering in place has probably been a good thing.  I've had to process some things, I haven't been able to avoid thinking about it.  I'm in more frequent contact with many of my friends and family right now that I usually am. 

There's more I could say, but at this point, this probably breaks the record for longest post.  Plus, virtual happy hour is about to start!