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.

 

The New Normal

If you're like me, you cringe a bit at this phrase.  It's the old moniker for how UD plans to approach the fall (we've now taken to The Path Forward which isn't much better and some say harkens to Mao's China). 


Recent events in Minneapolis following the murder of George Floyd and ensuing protests there and around the country have highlighted systemic racism and its impact on the safety and wellbeing of people of color.  In this case, we are begging for a new normal, rather than the current semi-dystopian reality. 


And for me, as an individual, the past three months since my stage IV diagnosis have also brought about a New Normal.  While I could share my thoughts on either of the two previous topics, this isn't the space for that, so instead I'll provide a brief update, though as a spoiler alert, there's not much to update on.


After the initial wave of "tellings", things slowed down in that department.  Though, I still find myself sharing the news on occasion or responding to heartfelt words of support from individuals and groups that find out through word of mouth.  Recently, alumni students, many of whom I grew close with on two study abroad trips have reached out.  Their kind thoughts are so appreciated. 


Yet, all in all, the new normal is a lot like the old normal.  I feel fine.  Granted, when working out, and breathing heavy or feeling short of breath I'll go through a mental checklist of: Cancer? Covid? Just out of shape?  And, happy? to report its the latter...quarantine and diagnosis didn't do much good for healthy living for me, though I'm recommitted.  I like to quote Newton's Laws of Motion...object in motion, stay in motion.  So I got to keep moving.


Yesterday I went to the doctor's office for my third round of monthly injections (even my oncologist said it wasn't fair to have 5 sticks, but I still prefer it to having to come in more often).  Thankfully, the itching and redness the one in my butt gave me has subsided.  Happy to report no other side effects of any of the new treatments.  As anticipated, the one, Ibrance, drops my white blood cells, but people tend not to get infections, and I've confirmed I'm not really at great COVID risk because of this. 


I also got blood drawn for the tumor marker (CA27-29) that was the initial canary in the coal mine that prompted CT scans.  It hasn't gone down, but this isn't totally atypical in the first weeks of treatment.  So it doesn't necessarily mean the treatment isn't working...  The best way I can explain it is that as the drugs eat up the tumor, it creates more little pieces of tumor, that can cause it to go up, vs genuinely new little tumors actually growing. 


I asked my doc when we will re-CT.  We had a bit of a laugh:
Doc: "I know you're anxious to see that it's working..."
Me: "No, I'm anxious to see that it isn't, because I'm a worst-case scenario type person". 
Doc: "Yeah, don't do that".
So he remains optimistic.  And as he said, there's lots of options. 


His physical exam and hearing clear lungs made me feel better that it really is just a lack of fitness causing any shortness of breath, so that was good to hear.  And we acknowledged that the mental part of this all may in fact be the most difficult.


So I continue with life, doing my thing.  Oh! One big update.  I adopted a cat!  May 8, I picked up Ms. Riley from a local pet store/Human Society.  We're getting along pretty well.  She likes head scratches and saying hello, sleeping in bed but generally coming in during the middle of the night, and likes to be close by but isn't really a lap cat.  

Having something else with a heartbeat in the house is kind of fun.  It helps me do my dishes a bit better (mostly...) and is good company.  And, in my ever-morbid-yet-realistic thinking, given that she's 1, have already identified a friend to take her if I don't outlive her.  I allow myself one of these morbid thoughts per day and many days I go without any!


As far as my ABC plan, Covid puts a damper on a lot of the adventures. But I was able to escape out of town with my colleague and friend Diana for a weekend of hiking and writing (scientific writing...we were pretty productive!).  It was great to be able to spend time in nature, and also with her family who joined us for the last night.

It was also a good reminder that even in the Midwest there are some great places to go adventuring and visit.  To help with this I got a SUP and may get a kayak.  I'm contemplating travel, but will be well prepared to enjoy what we have to offer here as well!

I wish I had more to update, but I guess no news is good news in this case.  I'm off to a Zoom Meeting, but I can't help but leave with this:

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!

5 Year Cancerversary Update

Five years.  A half a decade.

It's more than just a nice number that matches the number of fingers most of us have on our hands.  In the world of cancer and studies and statistics, five is an important number.  Five provides a bit of a cutoff, an over-under line.  And after five, things tend to get better.  Recurrence rates after five years go down.  Survival rates go up.  Now, the world of cancer and studies and statistics is a complicated one.  The exponential pace of the development of new therapies, new regimens, and a whole sorts of other 'news' make these statistics tough to interpret.  The treatments five years ago may have been different.  That clinical trial I did at Indiana University awhile back?  That's now considered nearly standard of care.  I was only in phase 3 of 4 at the time.  So yeah, like Ferris Bueller said:

So let's look around a little bit...from year 3 to five, what's been happening, how have I continued to stay "Out Living It" per the motto of the First Descents organizations that's been a big part of it.

But first...I'll be straight with you.  Part of the impetus for the update is that I'm fundraising again.  For FD, for myself to fuel another amazing adventure, like the Mexico surf trip (see year 3 update) but for the others.  For the week long experiences, the weekend trips, and all that the organization does for young folks like me that are dealing with the C word.

If you can, please consider a donation, of any amount, to support the cause.

So, since August 2017, what's been going on with me.

Post-hoc edit:  I looked at my calendar and just started to make a list, figuring I'd then add details and pictures.  But, then I realized, WOW, I AM ONE LUCKY LADY.  The past 2 years have been full of fun and adventure...so take this list not as a brag, but more as a gratitude list.  

Travel and spending times with those I love continues to be a top priority for me!

Lynn's Bachelorette in NYC

Backpacked in the Red River Gorge with UD's Campus Rec

Hosted my buddy Brett from Nike to lecture at UD

Lynn's wedding in Park City, Utah

Thanksgiving in Chicago at Tucci's

Christmas in Phoenix at Mom's

New Year's climbing in Red Rocks, NV with Californians

Easter in California

Experimental Biology Conference San Diego

European Adventure with Mom!  Paris first!

Study Abroad - Portugal and Spain

Physiology Majors Conference in Tucson

Road Trippin' with Erica to Colorado

From Colorado to Boise with Mom for 4th of July

Whitewater Kayaking in South Bend with FD friend Too Tall

Solo Mammoth Cave adventure

FD Reunion in Arizona at Mom's and Sedona

Maura's Bachelorette in Orlando at Harry Potter World

Visiting Sonja in the Michigan UP

Conference in Atlanta and UD friend meetup

Las Vegas Thanksgiving with family - climbing and hockey!

Christmas at Mom's in AZ

Work Trip to NYC with Nate and Maura

Spring Break in AZ helping mom post knee replacement

Experimental Biology Conference Orlando

Easter in Guatemala to Visit Diana's Family

Portland for work conference with a mix of friends and sightseeing

Minnesota for work conference with great reunions with old HS friends

Detroit wedding weekend

FD Tributary (local adventures) weekend climbing in Hocking Hills, OH

Disney Alaska Cruise with the whole family!

Tennis, gym climbing, board games and too much TV bingeing in between.

Some big news at work...successful tenure and promotion at end of last year.  AND, accepted a 1 year interim department chair position (more responsibility, office with a window (woohoo!), great experience).  

On the health front...had a bit of a "scare" with some scans and numbers a few months back, but all ended up fine and well (despite me doing a bit too much googling...).  Other than that, I continue to get my monthly shots, take my daily pills, and get my checkups.  But other than that, I'm sort of a standard mid 30s girl.

Thanks for all the love and support!  Here's to another healthy five years!

Cancerversary Year 3 Update

Hello friends, it's been awhile.  Almost a year and a half in fact since my last blog.  For good reason, I've been busy living it up, having fun, seeing places, and haven't really thought of myself as 'cancer patient Anne'.  But today, is anniversary #3, three years since those biopsy results confirmed the malignancy that grew inside of me and I thought it appropriate to briefly update anyone who might still be subscribed here and provide more info for any of the Facebook curious that might click this link. 

So what have I been up to in year 3 A.C (after cancer, of course!). 

A few notable things, mostly all good, since Aug 2016...

-August celebrations of Tucci's 90th birthday in Chicago!  What a hell of a lady.

-Labor Day reunion with First Descents friends in Nederland, Colorado.  We climbed, we talked, we reconnected (those able to make the trip) and missed those who couldn't.  Our dear friend Pinky would be able to join us and we would lose him earlier this year.  I'm so glad I got to spend those days with such a courageous fighter. 



-late September Denver wedding fun for my grad school friend Cat and reconnecting with such wonderful folk that way.

-early October- Celebrating the US victory in the Ryder Cup at Hazeltine National, across the street from my old high school.  I loved catching up with old friends and meeting new babies that have joined the crew.

-early November- Surfing in Mexico with First Descents on an alumni trip.  This was quite the experience, meeting a new cohort of brave souls, some decades past diagnosis.  It gave me a new network of young survivors that I admire.  Surfing is hard, but super fun, and I felt so lucky to be able to go. 

The money I raised to qualify me for the trip supported others' first FD experiences...later in 2016 one of my students would be diagnoses with chronic myeloid leukemia.  I was so happy to share with her about FD trips and like to think my fundraising supported her spring climbing trip that she loved.  I'm sure she'll carry the experience with her as she starts med school this fall. I'll make my plug now...if you're looking to support me and a wonderful organization that provides such a valuable support system to others, please consider donating, even a small amount, to my fundraising page here. 


-Thanksgiving- in Boise with the whole family.  Another new niece joined the crew and it was nice to not be bald this time around!

-A quiet Christmas in Chicago with Mom and 'Tucci.  Seeing Hamilton and buying lucky scratch tickets.

-An amazing New Year's trip to Morocco with my dear friend and colleague Erica.  It's a great country that I'd highly recommend visiting.  A taste of the Facebook albums here.

-The spring was spent busy with work and far less traveling.  A conference trip to Chicago reconnected me with past colleagues I'm grateful to have worked with. 

-In May, a quick conference in Michigan then off on the adventure of leading a study abroad trip in Santiago, Chile.  I had been there with faculty the summer before, but leading students was different, and in a great way.  It was lovely to connect with them outside of class and spend a month in such a wonderful country.  A couple friends visited, I spent time with my coworker's family, and the culture remained one that I enjoy.  A taste of the Facebook albums here. 

-Over the 4th of July, I joined family in climbing Independence in Grand Junction, something I don't think I would have imagined ever really doing (even before cancer).  Sharing that with family and other time in nature revitalized my sense of adventure.  Physically, the climb was made much easier due to my diligence in losing the additional weight I had gained as a result of treatment and lifestyle choices the past couple of years.  I'm happy to report I'm down 50+ pounds to my normal weight and continue to pursue getting stronger and fitter.  I'm indebted to my trainer and friend Ryan Patrick for helping me stay on track. 

-Around this time, I finished my Indiana University Clinical trial (palbociclib) drug.  I go tomorrow for my last visit with that doc and appreciate the opportunity to help reduce my risk of recurrence as well as contribute to science.


-In August, I reconnected with my Minnesota WU Crew ladies...the first time all 6 of us had been together since the Twin Cities Marathon just after my diagnosis while I was still in treatment.  It's so wonderful to see some of them as moms, all of us as strong and wonderful women. 

-Quickly after I headed to Boise to spend time with the Idaho Crecelii unable to make it to GJ in July.  Love those guys and grateful for a few days with the kiddos (including Violet, not pictured).

-My adventuring friend Erica propositioned me with a Glacier National Park backpacking trip that I couldn't deny and I have just returned home from that.  It was my first time overnight in the backcountry and won't be my last.  We did 50+ miles and about 10,000 ft elevation over the week...again, I'm so grateful to be up to these physical challenges.  I was reminded of my 'condition' when I suffered a little bit of swelling and had to wear my lymphedema sleeve but that couldn't stop me from hiking, kayaking, and enjoying the breathtaking scenery that surrounded us. 

-Yes, I do still have a job :) Though I'm grateful for the flexibility and time off that allows me these travels.  Professionally, I've continued to work hard and still really enjoy working with students.  I'm grateful that over the past year I've been involved with our Strategic Visioning process and our Institute of Applied Creativity for Transformation among my other commitments.  UD is a great place with exciting things happening. 

Overall, I am well, in fact, I'd go so far as great.  Cancer still sucks.  Just this weekend it took another great man from the UD and Dayton community.  Stranger Susie who quilted my wonderful blanket also succumbed this year. 

While this isn't meant to be a political platform I will say that this year has also been one where I've taken much more of an advocate and activist role.  I Marched for Science in Chicago (never thought that would need to be a thing), and I've written and called my representatives numerous times, sharing my story and the importance of adequate healthcare and protection for those with pre-existing conditions.  I worry about the funding of federal agencies like the NIH that are tasked with supporting the development of the treatments that have allowed me to have such wonderful adventures and truly hope that the amazing National Parks, Monuments, and protected places I've enjoyed remain these kinds of sanctuaries.  I have come to further appreciate that differences in culture are essential to humanity and make us stronger, not weaker.  As great as my personal life has been, I worry about these things like many others do too.  While I appreciate donations to First Descents, there are so may organizations that need support right now, it's difficult to prioritize. 

I'm thankful for the continued concern of those around me and my ability to now be in a position where I'm able to also provide support to the newly diagnosed.  I'll do my best to stay Out Living It, and encourage you to as well.