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.

A Much Different Holiday Season

Hi friends.  After a quiet Thanksgiving of just Mom and I, December was quite the whirlwind.  The semester wrapped up, another one in the books.  Soon after, I left for Arizona for family Christmas (minus the newlyweds that were on their own adventure of a lifetime!).  It was so great to not have to worry about coming home for a chemo appointment!

Prior to leaving, I had a bit of a 'scare' when I felt a bump of sorts under my collarbone.  I said I wouldn't worry about it over the holiday travels, since I was seeing my plastic surgeon upon my return and cancer had already affected one year's Christmas, I wasn't going to let it have another!  I've been assured since that it's likely scar tissue and will confirm with other docs next week at appointments.

Arizona was a blast.  It is so great to be with the family!  We went to movies (Star Wars in the D Box seats that move!), trampoline parks, out to eat, sang, danced, and played games.  Photo evidence below.

Star Wars!

 

Cooking with 'Tucci!

 

Box of Lies...thanks for the game idea Jimmy Fallon

After everyone left I then headed to Colorado for a week of visiting friends, many whom I hadn't seen since I moved!  I arrived in Denver and stayed with a friend from grad school, saw a UD friend the next day, drove to Ft. Collins the following to see folks up there.  Thanks to LJG for convincing me to "run" a 5K on New Year's Eve.  It was pretty chilly, but was a nice way to close out the year.  Was also pretty much the highlight of the night considering I was in bed shortly after "east coast new year's", aka, 10 pm. 

The 'Threesome' plus one! (and plus a really reflective jacket)

 

Big group at Top Golf! A seriously fun activity.  Looking forward to one coming to OH.

Seeing the lab and old colleagues was a bit of a blast from the past, but also a reminder of how time can fly.  While at the lab, I did a DEXA scan.  The clinical purpose is to determine bone mineral density (BMD), though in the lab we generally used it for determination of body composition (fat vs lean mass).  Given that part of my treatment is to basically zap my body of estrogen, bone density loss and osteoporosis is one of the potential side effects and consequences.  So I wanted to get an early baseline as well as compare it to my previous scan (from 2013 when I moved). 

Good news is that while my BMD has declined, for my age, I am still in a 'healthy' (not at risk) level.  Bad news is, as I could have predicted, from a body composition perspective, I've got some fat mass to lose!  Fortunately though, I didn't lose muscle mass (probably have the steroids in part to thank for that...and it's nearly impossible to gain as much weight as I did without gaining and/or maintaining lean mass).  Seeing the outline of your body and fat and lean tissue colored in can be a bit shocking, but it wasn't anything overly surprising.  Being with family and in Colorado with friends got me on a pretty good start of healthy living of being more active and making some smarter food choices.  (Thanks Alexis for multiple outside park circuit workouts!) I plan to continue that positive momentum.  Call it a resolution if you want, or just my continual desire for self-improvement, but it should result in some beneficial changes.

My attempt to be healthier is aided by the fact that when I got home and saw my plastic surgeon he removed any activity restrictions and said I didn't have to wear any of the super annoying compression garments/bandeau bras.  So that's pretty awesome!  I'll spend the next couple months continuing to manually expand and soften the pocket (ie basically molest that breast and try to move things around so scar tissue doesn't form and 'clamp' down on the implant) and then see him again. 

I definitely have lost some strength and flexibility after a couple of months of movement restriction.  It's tough to barely be able to do a pushup from my knees after doing burpee challenges and such last summer, but such is the long road of recovery and reconstruction!  To keep me goal oriented in taking care of myself physically, I signed up for the Flying Pig Half Marathon in Cincinnati on May 1.  It seemed like a reasonably goal and timeframe (15 weeks out) and a bit of serendipity in that it's been 10 years since I first ran it as a college junior. 

Since being back in town, I've been focused on getting rid of the cold I picked up last week, taking care of myself, getting the house in order (though I have trouble bringing myself to take down Christmas decorations!), and starting to prep for the new semester.  Not surprisingly, I'm a bit behind, as I can never seem to avoid waiting for last minute stress to motivate me to work (case in point, that I'm writing a blog post at work at Runners Plus right now rather than doing work for school). 

The past few weeks have been mostly great, though I can tell I'm getting back to my more 'normal' life, with some dark spots interspersed of over-analyzing and self-doubt. Sometimes I feel like this whole cancer business should have 'changed' me more.  That I should be this shiny happy person that only lives in the moment and doesn't worry or fret.  I know it's illogical, but it happens.  I have to remind myself (with help of the shrink and friends and family) that I don't need to judge myself for the kind of cancer survivor I am, just like I shouldn't have (though probably did) judge myself for the kind of cancer patient I was.  I'll save you from any more deep introspection from the past few weeks (Do I like my job? Do I like where I live? Should I look for a new job? Why am I single? Will I always be? Will I ever have kids? Why am I not happier?), but just let you know that the cancer really just adds an extra layer to basically the same questions I've always asked myself.

Next week, I see my surgeon for my year appointment, a bit of a 'milestone' in the treatment plan.  I'm sure I'll update after that, and on a periodic basis with any relevant or exciting news.  In the meantime, my best to you all for a happy and healthy 2016.  I didn't manage to get holiday cards out, but know that so many of you are in my thoughts often.  Please keep those fighters (I find out about more each day) in your best wishes. 

For a parting bit of hilarity.  Check out this ridiculously inappropriate dancing snowman my mom had and just how much my niece loves it. 

Hello from the skies!

Currently cruising at 30,000 (probably less as its an hour long commuter flight...hooray for single seats...best of both aisle and window worlds!) on my way to Washignton DC for about 26 hours.  I serve on a committee for my professional society The American Physiological Society and we meet once a year at the headquarters in Bethesda, MD.  It is somewhat inconvenient to leave during the last week of classes, but also nice to get away for a day.  The responsible professor would be spending this cruising time working on one of the many ToDos this time of year, but instead, I'll write a catchup blog (what I guess most posts are these days!) instead.  

While going through security today I got some extra special treatment/reminder of the whole cancer thing so may as well start there.  The Monday prior to Thanksgiving I had another plastic surgery, to try to improve the symmetry on the reconstructed side (or even out the boobs as my one friend more bluntly put it, which I love her for).  More on that later but it means I'm back in my dreaded friend, the chest bandeau binder.  It's awful.  And apparently, the Velcro is enough metal to set off metal detectors and not just get the pat down hand swipe for explosives residue but get to go in the back and get it swiped and further patted down.  As the TSA supervisor was doing her thing I said if I had had plastic surgery and you have to wear this bra thing to keep things in place and she cheerily said "oh that's why you have such a nice one! I could use that" I semi-snarkily replied "yeah, just get cancer first". To which she then obviously said "I'm sorry, but so glad to see you're in remission". Maybe presumptuous, but just being nice.  It all didn't really bother me, just served as one of those little reminders that I sometimes forget about.  Needless to say, I'll be taking the binder off prior to security on my way home tomorrow and during Christmas travels. 

The procedure went well and the best part was that Mom came out to help with things and spend the week with me. As the surgeon was drawing on me that morning during prep he made a game time decision to do some fat injections to help soften things.  Essentially a little bit of free stomach liposuction.  Sounds pretty nice, particularly since I've been a little lazy and am slow on getting the steroid/chemo weight gain but did make me pretty sore.  YouTube the videos of the lips procedure...they aren't very gentle.  Also, apparently many doctors recommend that afterwards you have to wear abdominal compression....for weeks...  I thought the bandeau was bad! The one they sent me home with was terrible' way too stiff, rose up on my hips, etc.  After my week checkin with the surgeon I was allowed to transition to lighter stuff like spanx.  Still sucks to be burrito wrapped 24/7.  Karmic payback for saying that it'd be fun to be completely wrapped in ace bandages when I was a middle schooler.  

Not as fun as I thought

Aesthetically, I think I'll be pretty happy with things, so this may be my last semi-major (requiring general anesthesia) surgery hopefully.  The recovery wasn't bad and because of the holiday and No Teach Tuesdays, I just had to miss a single day of work.  That Wednesday, Mom and I drove out to aindianapolis for my check in there.  It was nice for her to see that Cancer Center and meet that doc.  At this point, the "boring " appointments of "you're easy, you're doing great" will do.

The thought of recurrences has been more on my mind lately. A good friend from my First Descents trip had a recurrence that has him currently in chemo.  The woman who also spoke at the Maple Tree dinner has as well.  Other FD friends continue their fight.  They are all reminders to me of what could happen.  Though, there's not much else I can do other than what I am, so I just continue to move forward,  I'll be glad to eye my surgeon in January for my one year follow up. I see my primary medical oncologist next week also and think those appointments may stretch out to 6 months, so that would be a good transition as well.  

My climbing buddy Star was a Rock Star on FDs page 

Mom and I spent a super relaxing Thanksgiving here in Dayton.  Quite the contrast to last years quick travel to Phoenix for a whole family get together of 24 hrs and then flying back for a Friday chemo treatment.  Instead on Black Friday we saw "The 33", a movie about the Chilean miners that were trapped.  It was enjoyable and the wide shots made me excited for my trip to a child this summer.  Our itinerary isn't quite set, but I'm hoping we will get up to the Atacama Desert.  

Movies!

messy hair, eggnog and the Macy's day parade!

Meaning it's time to trim the tree!

In addition to having mom here to keep my place much cleaner than it ever is when I'm alone, it was nice to just have someone else in the house.  We watched a lot of sports, movies, ate well and in general relaxed.  Prior to the rush of the end of the semester, it was quite the treat! 

I am on somewhat restricted activity till I see the plastics guy in January but got talked into doing a Resolution Run in Fort Collins when I'm visiting Colorado after family Christmas in Arizona.  I better get off  and start doing something!  Been a little lazy post half marathon.  It was nice to be able to agree to plamying Broomball for the upcoming outdoor season...I missed those guys! Unfortunately my plan to keep climbing post FD trip hasn't yet materialized so it's another resolution for 2016. 

So that's about it.  I reread my blog posts a couple weeks ago.  I think it was when mom was here and neither of could remember where we spent Easter.  It was nice to have the record and be reminded of a few of the things that I observed throughout the past year plus. 

Crazy times in this crazy world we live in.  Here's to a more peaceful and reasonable 2016.  Best of everything to you and yours this holiday season!