Adventuring in CO and WV

 For those who have been following since the beginning of the metastatic diagnosis early in 2020, you’re familiar with my ABC motto…Adventures? Yes.  Bullshit? No.  Cancer? Fuck off.  Well, June has been a month of trying to live up to this motto and I think I’ve been fairly successful!

First, the medical update.  I completed round 2 of Halavan.  Round 1 actually wasn’t without some difficulty (sore throat, elevated liver enzymes, fatigue).  A small dose reduction was made and round 2 went much better.  I’m halfway through round 3, and after this one, we will scan (mid July) to see what if any progress has been made.  May blood tumor marker was in the ‘right’ direction (down), but the markers only tell so much of the story.  Physically, I’m still doing fairly well, though I have developed a bit of neuropathy  (numbness, tingling) in my left hand mostly.  It isn’t too terrible yet, just makes typing a bit more interesting!

Now on to the adventures!

Along with a busy summer of research, I had planned a few trip for June.  First, was to get out to Colorado and see some friends, I hadn’t since New Years 2020 (when A LOT of things were different!).  So after a Friday treatment, I headed to Cincy to fly out to Denver.  Friday I got to catch up with a great FD friend Flash for some dinner…

And spent the rest of the night with Cat and her family.  Saturday morning was grad school reunion style of Cat, Nat, Leora and I plus families…

Then it was off to the mountains with Cat and Leora to head to the Mt. Princeton Hot Springs.  I’ll let the pics speak for themselves in terms of how unique and cool this place was.  So much fun to hang, stay the night, and wake up to relax mountain-side (and go down the slide!).

Lunch in Buena Vista (BV for the locals…) and then back down to town, dropping Cat off and heading to Louisville with Leora, where she’d be my wonderful host for the next couple of days.

I spent Monday hiking (not to the top with my current fitness, but still getting my steps in!) at Chautauqua Park and the Flatirons….

Before I headed up to the Fort to meet up with grad school mentors and friends Jen and Frank.  It was great to catch up, and the beer and food at Crown Pub is still enjoyable.  Tuesday, I enjoyed a walk out Leora’s backyard that was nearly as beautiful as the day before and then headed to CU to meet a collaborator I had only seen on Zoom screens to that point.  A Pearl Street lunch, coffee with LJG and I was on my way to the airport, via dinner with Rachel, a great friend from UD.  All my high school friends have now moved back to MN, but it’s still so fun to spend time with friends from various points in my life while I’m in one of my favorite states!

Back in Ohio, I stayed busy in the lab with my wonderful students.  Working hard and having fun (and extending my mentoring to suggesting the kids pack at the movie theater…thanks Mom for that smart snacking advice!).

We even had an “insta famous” moment, when Adam Grant, author of Think Again commented on our post about his great book.  Social media isn’t always all bad!

A day of hooky at Kings Island with Diana and fam was fun, though sort of depressing as my new bad ass cancer fighting body is also a little big for some of the roller coaster rides….additional motivation for healthy living I guess.

The latest adventure was of epic proportions!  Some of my high school friends were able to find the time in their busy lives to come down and adventure with me!  The idea came up in conversation with Alexis, about how this year was the 15th anniversary of my dad’s passing.  And, that I had said I was going to spread his ashes in WV where he used to raft, got me into it, etc, but hadn’t yet.  So, why not?  Why not go and do it?  So we did!

Sonja arrived Thursday night late, Friday I finished my ‘camp mom’ duties of packing bags of toiletries and necessities, we picked up a rental car and then headed to Cincy to pick up Alexis, Heather and Keely who had flown in from Minneapolis.  We spent the 4 hour drive through Kentucky’s rolling hills and into West Virginia playing catch up, singing pop 2K songs, and busting any preconceived notions that ladies are cleaner/less vulgar than men.  We rolled into Fayetteville WV, crossing the New River Bridge (America’s Newest National Park!), ready for adventure!  Our home for the next two nights would be camping at Adventures on the Gorge, a terrific resort I’ve frequented before.  

I’ll be honest…I had to convince the girls a bit that whitewater rafting would be fun and they’d enjoy it.  Luckily, I KNOW MY AUDIENCE.  It was a fantastic time.  We had an AMAZING guide Dusty that we bonded with on and off the river.  The weather was great.  Me and my big mouth got dumped early (I deserved it).  The robust rafting crew did great on the Lower New.  Just a few highlight pics…

And yes, I realize that if you haven’t been rafting, rafting pics are pretty lame…we learned that as kids when my dad would always want to show us his pictures.  Speaking of Pops, after the great day rafting, celebrating, and going to bed at a time reflective of being in our mid-30s, Sunday was a pretty special day.  We drove a little ways over to the put in for the Upper Gauley, the river Dad had rafted with his friends back in the 80s/90s and which had originally brought me to WV (on his suggestion) in college and since.  There was a nice spot to say a few words (glad we did the I Am From poems at work last year), spread his ashes, and refill his urn with river rocks representing everyone in the family.  It was so nice to have friends with me, especially those that knew my dad and were there alongside of me 15 years ago at the funeral.  In true Anne/Crecelius style, there weren’t just tears, but also some laughs (that calm pool didn’t really clear the ashes out as I might have thought….maybe he’s just waiting for dam release and high water!).  

A quick waterfall stop on the drive back, more food, laughs, “inappropriate” discussions, and it was time to drop the girls back at the airport for their flight home.  Lex put together an amazing video of the trip…it’s about 13 minutes, she included the video from on the river, edited it beautifully.

In true spirit of Lee, have to share the rafting footage…which, let’s be honest, if you havne’t been there, it’s way less exciting to watch!

Sooooo, what about the cancer, Anne?

Right?  Like, both of these trips were the day of/after chemo treatment.  And I’m bald (though hair growing back)! And dying!  How does that all factor in???

Great question.  Really.  Here’s where’s my head’s at with it.  Did I plan these trips in case this is the last time I see some of these people? Absolutely.  I sure hope that’s not the case, but who really knows.  Time will tell.  And, really, I want the people I love and that love me to see me and remember me and spend time with me as ME.  Not as some cancer patient devoid of energy and life.  I think if you asked most of the people I saw (and I did with some!) they’d say they maybe couldn’t even tell I’m “sick”.  Granted, I make my morbid joke a day, lack eyebrows and eyelashes and am at the tip top of weight cycling I’ve done my whole life.  Maybe they see that I’m trying to embrace a ‘no bullshit’ mentality.  But other than maybe a bit earlier bed time, the trips and adventures were pretty “normal”.  Which is exactly what I wanted.  This thing I’m living with is in my life, but I’m committed to not making it my entire life, as long as I can.  So I’m going to travel, and hike, and maybe those goodbye hugs were just a little tighter, and a little longer.  

While I don’t wear a “I have metastatic breast cancer and there’s no cure” t shirt around, I’m not shy about talking about it (clearly).  I’ve had folks say some really, really, kind things and do some really kind things this past month as I’ve shared more, met people, done different things, etc.  It’s really amazing.  Some of the girls and I had a heart to heart after rafting (maaaaybe fueled by those PBR pitchers at the bar), about the future, the unknown, and my likely lack of a presence.  But, I do really believe that one’s legacy and impact goes beyond their physical presence and that’s all I hope for myself.  My legacy can be in spurring old friends to get together when they normally wouldn’t (or only did when I came to town).  It can be in convincing my friends to push their comfort zone and try something they wouldn’t have normally and walk away LOVING it.  For my students to ask a new question, have a bit of fun, or just see each other as people.  

There’s a constant balance of “the end” and “the fight” (which the whole “fight” thing is lame and dumb and it’s not that people who die of cancer didn’t fight, but it’s such common terminology, it’s hard to avoid it).  I waver between the morbid thoughts (‘oh hey, do you want this jacket, because I’ll probably not need it’) to more entertaining morbid thoughts (like when Heather mentioned sky diving and I said “oh hey, I can go for free because I’m dying!) to thoughts that aren’t morbid at all (‘so when are we’re going to do this again?!”).  It really kind of depends on the day, my mood, the activity, etc.  

This last month I was able to see and spend time with people that have been so important to me in life.  I was able to do things I enjoy, to accept new experiences and reminisce about old ones. Today was another great day with the Dayton Fam celebrating Maura’s birthday with a zoo trip, casino, and good food in Cincy!  

This next set of scans will once again be telling…do I stay on the same drug and same schedule?  Change to something new?  If so, how is it?  The questions can be endless if I want them to be.  For now, I’d rather keep planning the adventures to come (Family visit! Trip to Colorado! Work trip to Lake Placid!), keep trying to minimize the bullshit, and definitely telling the cancer that it can just fuck right off.

New drug, new post

As always, I continue to be overwhelmed and so grateful for the amount of support I have in my life.  The past few weeks, between the Science article, the news about progression, stopping wearing my head scarf, etc.  Big to small, you all are awesome.  Thank you.  

A fairly (at least anticipated because I have dinner guests arriving soon!) quick update on the new drug.

Quickly science background is that Halavan works to disrupt microtubules which are important for cell growth.  Cool.  I’m not an organic chemist or a pharmacologist so I don’t really know why that means that we can give the dose over a 3 min push into an IV versus a bag that hangs for 20 min, but that’s the case.  The chemo routine is pretty much the same.  Arrive, grab a chair, look to confirm I’m the youngest in the room by a solid couple of decades most of the time, politely chat with the nurse (usually the same, although sometimes a floater).  Last week, for my first dose, I had to sign the consent, but since I’m a veteran there wasn’t much preamble.  IV in the arm (thank you right arm for being such a good target for so many sticks!).  Draw blood for labs.  Hang out for 15 min while labs run.  Have the nurse hand over and say they are fine (thus far) and then actually examine them to see what that really means.  After that they can prep drugs.  I do get a steroid pre-treatment with this one.  It’s common to prevent nausea and can help with any allergic reactions. 20 min later I’m done with that and the nurse sits and slowly pushes the drug for.a couple minutes.  About an hour both times, pretty slick.

So far, so good and I seem to be tolerating it well.  Have some rosy cheeks/facial flushing, but nothing overly concerning.  No nausea or other GI distress.  Energy levels are decent.  I played a doubles tennis match last Saturday.  I’m going adventuring tomorrow.  So far no major neuropathy (tingling, loss of sensation in arms in feet), although that can occur more commonly as doses accumulate.

Next week I have off, then I’ll see the doc for monthly checkup, full lab work up before starting cycle 2 (remember it’s a 3 week cycle, 2 on, 1 off).

Mentally I continue to vacillate a bit between being pretty good and planning my funeral.  Literally.  I sent my BFF some amazing insomnia fueled texts with plans for the anti-funeral I have in my head (think about like a graduation picnic/party, at various sites across the nation, possibly with branded material and party favors).  Shared it with my mom too.  By the way, MY MOM ROCKS.  I realize Mother’s Day is has passed, but seriously, she’s the best.  Tough lady, super loving, and so far our mutual plan of being totally honest and being able to talk about “real” stuff is going well.  I read things on Facebook cancer groups about people who “don’t know how to tell” their parents, or have these troubles relationships and not only do I not relate to it, I generally tell my mom exactly how much I can’t relate to it and how lucky we are.  But in addition to sketching out possible end of life plans, I’ve also sketched out basically a trip a month, with adventures in between.  

I did make one decision that was somewhat motivated by possible declines in the future as well as other factors.  I’m moving!  While I love my little house, I’m looking forward to moving to a pretty sweet 1 story, with attached 2 car garage apartment, a little in the burbs, but still close to lots of things and 20 minutes from work.  I won’t move till September, so much more on that later.

Work has shifted to summer mode...SUPER quiet, shorts and sandals, and shorter hours.  I’ve got some great students working with me for research, so am confident in building some good momentum going into sabbatical.  Some of the students are documented their work by posting to a new lab Instagram account...give it a follow!  @ud_physiology It gives a good luck into my life. Sharing health news at work is always the hardest, but again, everyone is supportive and willing to be flexible and that relieves a lot of stress.

I was able to volunteer for our in person graduation and so was one of the few faculty able to congratulate our students.  Many shared that it was so nice seeing a friendly face and with my uncertain future, I was really happy to be able to be there.

Friends have arrived so as good of a stopping place as ever! I’ll just go sans links and pics with this one!

I was waiting to update...

 ...until the end of the semester.

....until there was something to say.

....until the next scan.

Metastatic cancer is so much waiting.  Waiting in doctor’s offices.  Waiting for results.  Waiting to see if ‘it’s working!’ or if it’s “so...what’s next?”.  There’s a big difference between that exclamation and that question.  And the only thing there is maybe more of than the waiting, is the questions. So. Many. Questions.  The simple ones like “are you currently in pain?” and the hard ones like “how are you feeling?”.  Questions others ask me, and the questions I ask myself.  “What will I be able to do in 6 months?” “Will I be alive in 6 years?”  I do my research, it’s what I’m trained to do.  I look up the statistics, I interpret results cautiously.  I take into account the anecdotes, but lean into the percentages.  

I said to my therapist yesterday, we are all the protagonist of our own story.  We all want to feel special.  We want to be the exception.  And, to some extent, I have been.  I have an advanced degree, going on percentages, that’s ‘special’.  I’ve received honors that only a small percentage have shared.  There’s probably other characteristics that put me in a minority or that show that sometimes the exception really is the rule.  But, other times, we’re just one of the majority, one of the many, and we can’t rely on storybook plots.

That’s a long preamble and perhaps more deep and/or depressing than needed.  Here’s the long and the short of it:

My most recent scans showed that the benefits of the first 3 months of my infusion chemo (decrease in size and number, per the February CT) have disappeared.  The lung nodules have increased in size (doubling) and number over the last 3 months of the same therapy.  There’s a few minorly suspicious other lymph nodes, yet still no signs of liver involvement and/or progress of the sternal bone metastasis.

So what’s next?  Well, we grab for another straw.  Try a different class (science speak for the way in which a drug works) of chemotherapy (Halavan, more deets later).  It should be similarly tolerated, it’s a 21 day cycle with 2 weeks on and 1 week off.  We’ll rescan in 2-3 months and see if it’s working.  If not, there’s basically one more class of drugs to try before clinical trials (if any exist and I qualify for) become the only real option.  4th line treatment, here I come, just a bit over a year past diagnosis.

The scan was Tuesday.  I saw my doctor yesterday morning.  But it’s been 2 months since my last post.  I really was hoping to be able to say “great results! We’re going down to 2 weeks on, 2 weeks off”.  Last doctor’s appointment, in anticipation of this latest scan, my oncologist and I even talked about remission...I had such a positive response to the first 3 months on Abraxane (side note, I always have to be careful in wording things...my default is to say there was progress...but that means the cancer didn’t progress....it can get confusing, probably why I often default to the more clinical ‘there was a shrinking in size and number’).  Alas, that isn’t the case.  The update is with less than ideal news.  

So that dreaded question of how am I feeling?

Physically, I feel basically the same.  I’m still pretty out of shape, mostly, at least I think, due to the excess weight I’m caring.  I have an occasional soreness in my sternum, or tinge of pain in my arm, a zinger of numbness to my foot or hands.  But overall, well.

Mentally, I feel sad, disappointed (this is why I don’t let myself get hopeful people!), angry, frustrated.  I can sprint through those stages of grief faster than I run in real life, that’s for sure.  It’s that waiting, and those questions.  I had started to make plans further out to the future.  I had pushed back the Africa trip due to COVID, but didn’t question that next summer I’d be able to go (and yes, I still may, but it’s not certain and perhaps even not probable).  I was making plans for my sabbatical.  Plans that even meant spending time on other future pursuits, like writing grants.  And this week I was reminded of the uncertainty of it all, the fragility.  

And yet, despite the shake up of this week, there’s been so much good in the past 2 months.  Among the regular frustrations, there were a lot of really cool things to highlight.  

-The end of Women’s History Month and the Women of UD celebration was really cool.  Yes I did walk to see my face on a building and pose like a dork in front of it.

-My awesome students busted out a TON of research, n=16! In a matter of weeks.

-I spent Easter weekend camping nearby with my dear colleague Diana, one of her adorable children, and then a great family lunch and egg hunt.

-I taught, did recruitment events, did a ton of advising and the normal academic nonsense.

-I participated in our campus Relay for Life.  Many of you were probably some of the SUPER generous donors that helped me/us raise a ton of funds!  I definitely could have posted about this event itself.  Supportive colleagues, steadfast friends by my side.  Getting to connect with the family of the colleague who passed from cancer at the end of last year.  Seeing students come together to support a cause.  It was truly a great night.

  

 

-End of the semester celebrations with my lab crew.  These kids have been a bit of normalcy and a huge support this year (and having Mimi the 4Paws dog as part of the lab never hurts the vibe...)

-Just this week, the day I got scan results reported, a distractingly good time at the Reds game.

-Professionally, I authored a few things related to my diagnosis and how I incorporate it into my teaching.  One, a small professional association blog.  The other, a much bigger deal, an essay in Science magazine.  It just went live yesterday and I’m amazed that I’ve already gotten multiple people from across the globe, that I’ve never met, reaching out with well wishes.  People can suck, don’t get me wrong, but they can also be pretty amazing sometimes.

So what’s next?  A new treatment, yes. But come on, you guys should know me well enough by now to know that’s not all.  I can’t let it be. That’s my fight, my battle (although as I’ve said before and is fairly well established in the literature, that war analogies are terrible as they relate to cancer, and COVID too).  Along with the new treatment, I’ll continue to play tennis, to row on the crew team (novice this year since fitness is low).  Tomorrow, I’ll celebrate my 1 year anniversary with Riley cat.  I’ll volunteer at our in person graduation (woo hoo UD for managing COVID!) on Sunday.  Next week is end of year meetings and then a summer of research, tennis, self-care. Starting to connect with folks now that most are vaccinated (GET YOUR VACCINE PEOPLE.  I CAN’T HELP HAVING CANCER THAT MAY KILL ME BUT YOU CAN PREVENT YOURSELF AND OTHERS FROM POTENTIALLY DYING FROM COVID.  FULL STOP.)  Planning for a few adventures with family and friends, and looking ahead to a year long sabbatical that allows a bit more flexibility as well.  

That’s what’s next.  Trying to not wait.  To Mariekondo life as much as possible, doing the things that spark joy. For the rest?  Thanking it for the joy and/or service it’s provided and moving on. 

Here’s a morning selfie while I write, to show the salt and peppery regrowth (more salt than pepper admittedly).  Despite the waiting, despite the questions, I’ve got to keep smiling!

March Surprises

Well, it's been over a month since last posting and the good news that the chemo is working.  It sure makes going to treatment, shuffling through headscarves in the morning a bit easier to deal with.

I've got about a half an hour before some morning academic advising appointments (it's advising season, my life is sort of consumed by it for the next 3 weeks), so figured I'd share some quick updates, some more surprising than others...

I got my vaccine!  I won't get into the frustration of inconsistent policies by state, inequities in access, etc.  Long story short, one of our major health systems has been having clinics at our basketball arena.  They got a large allotment yesterday.  Word of mouth convinced me to go over and put my name on the 'end of day' list.  Well, better than end of day, about an hour later, I got a call to come in!  First dose in, second one April 7th, Pfizer, arm sore, otherwise no issue.  Bottom line, we need as many people vaccinated as soon as we can, so if you can get it, get it, and help others to do the same.  

Don't worry I filled out my name later...

So many people were concerned and helpful in helping me to get a vaccine.  I think it was pretty much a group effort!

Other surprises, I got the kindest note from a former UD student (not even one of mine! we just crossed paths) about some positive effect I've had on her, at 'needed' times throughout the years.  As the universe would have it, the note came at a time I needed it from her, after a stressful work-related event.  It was a great reminder that we sometimes can't know the influence we have on others, now and in the future.  Thanks for the reminder Elizabeth A.  

Not really a surprise, but we got the winter storm dumping snow a few weeks back, though feels more like spring now!

Beauty of blended learning was that it didn't disrupt the class schedule and it was basically business as usual.  

My buddy Nat told me about the greatest mascot ever, Toasty....I can't wait to visit Colorado Springs and take in a Vibes game.

Serious kudos to that marketing division.

 I may have reached peak multi-tasking the other day, watching honors student symposium presentation, the last Flyer game (not our best season....) and a meeting for work.  God I love technology.  

March is Women's History Month, if you're not aware.  I am super honors to have been selected as one of the Women of UD.  It's a fantastic group of ladies, and I've definitely been boosted by so many other past recipients and males on campus and in my life.  They are profiling us on the Women's Center Instagram Page, Humans of New York style.  I'll include my text story below for those of you not proficient at links :)  There's a virtual celebration next week and it's been a good reflective exercise.  Hasn't totally erased my imposter syndrome but it's nice to be recognized and has given some good feels.  One of the harder, but maybe more fun tasks was picking a theme song...this is what I came up with (thanks for the inspiration EW), I think it's fairly fitting:

Other than those few things, fairly business as usual...work, tennis, hanging, avoiding doing dishes, etc.  Riley and I had a few closet incidents, but I think she's mostly recovered (from being locked there all day, and then from getting her paw crushed, when I was paying more attention to making sure she wasn't inside the closet than near the hinges...)

“There is beauty in multitasking and Zoom meetings. In the middle of March, I was the interim department chair for Health and Sport Science and we were having a sort of emergency leadership team meeting with the other department chairs and the Dean's office about what was going on, and I remember that moment very clearly because it was during that Zoom call that I also got a phone call from my oncologist. The breast cancer that I had been diagnosed with in 2014 had returned and had progressed to stage IV metastatic disease, and he said ‘I'll see you tomorrow to talk about next steps.’ Then, I sat back down and joined the Zoom call again. I had to go in for the testing, and I literally ran a Zoom meeting for my department from my cell phone in the parking lot of the doctor's office, because the meeting was running up right until the time of my appointment. And, I could be in an Executive Committee of the Academic Senate meeting from the waiting room before a bone scan. Even now, I have Friday treatments, and I will be sitting in the chemo chair, with my iPad out listening in on meetings. Last March, I changed treatments: tried something for three months, didn't work; tried something else for three months, still no progress; fortunately, the infusion chemo that I've been on for the past three months actually did show some progress, I just found out. So as much as the pandemic defined the past year for so many of us, for me it's also been a personal health challenge. The idea of resilience, for me, has definitely been multifactorial in the past few months, trying to manage how to be a strong leader and have an impact, and yet also prioritize myself, because I need to. I think there are a lot of parallels to my current metastatic disease and the pandemic in that so much is unknown and so much is ‘we'll see how it goes.’ We can't make plans more than three months out because ‘we have to see what the data looks like,’ and as for my health right now, that's sort of how I have to live my life. 
I’m a scientist and I love data and I like supporting things with facts, and in the past year there has been overwhelming amounts of information. Trying to sort through all of that and make decisions, I think, has been the challenge and to recognize that none of those decisions are made lightly or easily; that we trust that those we work with are taking into consideration various perspectives. Yes, I'm doing my own research on the back end, but at some point you have to trust the people who we've hired to do the jobs, to do them right. I can Google all I want, but at the end of the day, I still rely on my medical team to help me make decisions about my care. I still rely on the University administration to keep the doors open. Sometimes life hits you with big messy complex stuff that really doesn't have a good answer. You can wallow and complain or you can adapt and modify your life to become accustomed to it. That's what we've all had to do the past year, and what I think I’ve tried to help others do. I talk a lot with students, trying to help them understand the challenges of when things are coming at you, that what we're doing in the grand scheme of things is actually what's important. I think that the pandemic has forced people to maybe acknowledge, or to say out loud, a lot of things that we hadn't been saying before. Maybe it's because we're only communicating virtually, and so we have to actually articulate things because the ability to actually connect physically has been taken away. Anytime you're going through a significant health crisis, there's that sense of ‘there's no time to waste,’ and ‘I need to make sure that I say what I want to say.’ That mentality of trying to address the present moment, I think the past year we've all realized, is much easier said than done. But when you strip away the things that you can do outside of the house or the things that you can do at work, you kind of purge down to what's most meaningful and what's most important. Seeing the humanity in people has been so important this past year. Quite frankly, probably one of the bigger things is the idea of grace and humility, and what you're capable of doing and not capable of doing. I’m not one that likes to admit that I'm not capable of doing something, and I am one that generally hesitates to accept and ask for help. But I think having dealt with the health issues, I have learned to accept help and to allow others to help, and to admit when things are overwhelming or I'm overcome by something, and I think that's been really important this past year as well. So, while I don't have any family members here, I definitely would say that I have my UD family that I rely on and that has been critical in helping me get through both the pandemic and different types of health challenges. I’m an alum, and I hope that I live out the ‘Learn, Lead and Serve’ motto of UD in what I do. It's a great community and I feel lucky that I have good relationships with the people who've been honored with this award in the past and on the list this year. I feel fortunate that I know many of them quite well."

Magic Milk

I was able to have my research lab’s journal club face to face this morning.  Journal Club, or ‘Dear Diary’ as Lex likes to call it, is where we collectively read a published research study and someone presents it, we discuss, good/bad, how it relates to our lab, underlying physiology etc.  After going through intro, methods, result figures, we usually skip right to the “take home message”.  Or, as my travel buddy Erica says, “what’s the punchline?”

Well folks, here’s the punchline of this post...

THE CHEMO IS WORKING!!!

That’s right, tAbraxane, the poison that has caused me to have hair thin, leading to shave it, that takes up my Friday afternoons, that costs 10s of thousands of dollars (billed to insurance thankfully) is working.  It not only stabilized the growth of the nodules in my lungs but it even led to some improvement.   No, not some improvement, “marked” improvement.  That’s fancy clinical speak for a good amount.  Yay.  Don’t believe me?  Need to reread it again like I had to?  Go for it.  Impression from CT scan:

How did we get to this welcome news?  Well, Monday was full of appointments to do these 3-month post infusion chemo scans.  I went to my oncologist’s office in the morning for the CT.  Around noon I walked down to the hospital (yay for convenience) to get the nuclear tracer injected for the bone scan.  

Radioactive! That Imagine Dragons song always plays through my head when I get these.  Walk back to work, do some stuff, go back at 4 for the bone scan.  Thank god for a flexible schedule.  Once I was home from the scan I checked my online chart for the oncologist’s office, never really thinking the CT would have resulted and been posted yet.  But there it was!  Some celebratory text messages to family and close friends, a few rereads to make sure I wasn’t misinterpreting things, and wow, what a relief.  I was really expecting bad news.  Not for much reason, symptoms-wise nothing has really changed, but just seemed like nothing was working.  Well, thanks big guns, thanks for working.  

I saw my oncologist this morning (the planned post scan visit).  It’s a much different feeling walking in when you know you have good news to talk about rather than not.  It was great seeing him, and the nurse practitioner visibly excited by the good news.  We confirmed that the plan will be to continue these infusions for another 3 months.  In general, we continue until toxicity (with this drug most likely would be neuropathies in hands/feet...I haven’t really had any, maybe a little loss of sensation in one thumb) or disease progression.

3 months at a time.  I’m living life on quarters now.  I just got extended a bit.  I know where I’ll be Fridays at 2 until April.  And I sort of know what to expect, which in a world of various treatments and side effects is pretty great.  It also helped to make me feel less like I’m ‘circling the drain’.  Easier to think farther out.  The doc did say that after the 3 months is might be possible to move to a 2 week on 2 week off schedule, just to free up a little more time.  

I also was able to drop the steroid pretreatment that I didn’t get while I was in California.  I don’t think it’ll make a big difference, but in trying to “fit in airplane seats better” as I told my trainer my goal was, every little bit helps.  And having a bit more hope for longer high quality of life time is also motivating to make positive changes in eating/exercising.

The bone scan resulted right before my appointment.  There’s even been a bit of an improvement in the sternum metastasis, and no new ones either.  That was welcomed news as I have occasional aches and pains I of course panic and think are new mets, and in my ‘prepare for the worst’ way was scared that it might be a good news/bad news thing.  On that note, I had a strange skin rash and was afraid it might be a COVID symptom .  Wouldn’t it be ironic to get good cancer news and COVID in the same week?  Thankfully, testing is fairly available here and I was able to schedule a rapid test last night.  Negative result assuaged those concerns.

Speaking of COVID, state-by-state vaccine distribution plans are weird.  Here in Ohio, we are not prioritizing college personnel (just K-12 teachers), nor the immunocompromised.  So as of now, I’m in line with other under 65’ers for whenever that is.  Side note, remember even with vaccines folks, masks and distancing are going to be necessary for awhile!  Heard immunity takes a bit and these new variants don’t make it any easier.  

Other than the good news, not a whole lot to share.  I’m back to teaching, starting face to face this coming week vs the fully zoom sessions we’ve had so far.  Entry testing has been pretty good for student cases.  Though folks need to be vigilant and get daily numbers down a bit.  I was just texting with Lex about whether or not I’ll keep wearing scarves/beanies all the time “in public”.  I don’t around the house unless I’m chilly, nor with friends.  It’s sort of just easier.  The stubble isn’t too splotchy so I think I can pull it off, but haven’t quite decided.  I really should probably not think about how others feel about it and just do what I want, but that’s easier said than done.  

Being busy at work is nice, I feel back to myself a bit more, back to a routine.  I definitely miss the sunshine of CA/CO and being with family but have gotten back into the groove of my singledom, and have tried to pull inspiration for recipes (carbonara is so easy and delicious) and been thankful for our family zooms/escape rooms/Marco polo/texts.  

Thank you magic milk.  You may be poison.  You may be expensive.  You may be annoying to schedule and make me feel tired.  But you’re helping.  So it’s worth it. So worth it.  See you in a couple days.

Guest Posts from my Hosts!

EDITOR’S NOTE:  Anne here.  Quick updates.  As predicted, things have gotten better.  Being busy is better.  Another round of treatment without much to talk about (waiting to hear on some things like whether I can go ahead and try to get COVID vaccine, if we’ll do bone scan and CT or just CT, etc).  Classes began today (virtual for at least the first couple weeks).  People are awesome...and thanks for understanding and appreciating my honesty and the balance of everything.  Anywho...a special treat for you!  Guest posts!  I thought it might be fun to hear directly from the folks I spent most of the past 2 months with and they were kind enough to oblige.  Here are their words (probably harder to share than my own because they are so kind).  Enjoy.

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First-from my niece Carmen...an amazing artist (check out her IG, give it a follow!), the one that made me “Auntie Anne”, and an all around amazing young person.

Its January 8th and auntie anne has just left after spending around the last month and a half with us. a lot of stuff happened in that time.

 

off with her hair!

Auntie anne came in with a bang, full volume and pulling out chunks of hair during dinner which I later had to wash out of her soup bowl 😖 she was shedding hair faster than our cats so we shaved it off the night she arrived. we all took turns shaving off some hair but dad did most of it. she rocks the bald badass look. 

i was worried that when i saw auntie anne in person i would see that the cancer had beaten her down, but auntie anne is incredibly strong, and despite it all she still carried a persistent sense of optimism that made me feel more hopeful. 

during november we chilled out, played tennis together (i apparently don’t know how to move on the court), and took walks around the neighborhood. we went to see a light show at filoli, we danced, biked russian ridge, and enjoyed a warm thanksgiving together.

december fun

now on to december. we all had a fabulous makeup photo shoot after watching a makeup master class. there was lots of coughing and cackling, but not from covid, from the cancer.. grandma finally arrived around this time and it felt even more festive. after being stuck with my family (no offense family) for so long, it was very refreshing to have two new fresh faces to spice things up. i didn’t get to spend much time with grandma though because my dad, sister, and i all left on december 20th to drop off a canoe as a secret santa present before heading to colorado

adventures in colorado

in colorado we played pickle ball, danced in the gym, and played some ring fit adventure. we had a marco polo christmas with my moms side of the family and then went down to eat a socially distanced christmas dinner with my dads family. i’m really glad that both sides of my family are so welcoming and get along with each other so well. 

skiing in telluride 

after that we took a short trip to telluride for some skiing. auntie anne wanted to downhill ski so i decided to go along with her. skiing during covid was definitely a little stressful. we did as many routes as we could considering the long lines, stopping occasionally to let auntie anne rest her numb legs. i was very proud that she was watching out for her body, and i didn’t mind stopping once in a while to take in the views of the mountains while she was resting. she eventually decided to stop since it’s understandably frustrating to ski with lung nodules and cancer and the fear of covid and not being as physically fit as she once was. it was incredibly impressive that she went out onto the mountain at all and did so many runs so i said goodbye to her and skiied a bit more before heading down too. that night we ate some good food and spent the next few days skiing and snowshoeing amongst the gorgeous mountains. 

on new years my grandparents came to ski a bit and eat pizza with us. we passed time that night by watching movies like mean girls until it was finally time for the ball to drop. a few fireworks went off randomly, and we all celebrated with a glass of sparkling apple cider. 

i am extremely lucky to have had a warm loving family by my side through this tough year. having grandma and auntie anne live with us was a much needed change of pace and helped me regain some of the happiness and excitement quarantine had stripped away from me. hopefully 2021 will be better, but i don’t want to jinx it. peace out ✌️ 

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From my big sis Karyn...an all-around superwoman.

My sister asked if we’d like to write a guest blog. Carmen writes. She willingly went first, courageous as she always is to put her thoughts (or her art) on paper, to share a part of herself with the world and accept the reaction. It’s one of the things I admire about her.

I myself like to stick to haiku or poetry if I’m going to share. Prose feels like a helpless game of “telephone” to me—trying to connect my thoughts to my writing to your eyes/ears and your thinking. It seems doomed for failure. Even when I read my own writing a few days later, I tend to feel surprised I would have said things the way I did. I much prefer a restrictive 5-7-5 syllable count, a 6 word memoir, or the opportunity to evoke feeling but in a poetic form that makes whatever you walk away with fair game. 

But Anne means the world to me, so despite being the diary and blog-less person that I am, a few thoughts.

The only thing that serves as a better reality check than unending months of COVID living is living through friends and family battling cancer. This damn disease messes with not only the body but the mind. When Anne was making plans for the holiday, she had to have a conversation with her oncologist that included asking, “Is this likely to be my last Christmas?” The answer to that question matters, but the fact that the question is being asked matters more.  

Buddhist philosophy and writers like Echkhart Toll talk about “the power of now.” One of Anne’s superpowers, in addition to summoning positivity in ways many could not, is her readiness to figure out what opportunities she has right now. Without Anne here, the last month and a half would not have included: learning how to devein leafy greens machete-style, dancing to pop Christmas carols around the fireplace, playing online bar trivia with extended family, discovering wifi controlled outlets that automate your Christmas lights, taking an online cooking class to make steamed potstickers and dumplings from scratch, tennis lessons using our long levers to get more power, new recipe ideas, a photo shoot following a makeup tutorial, board games at night, cheesy Hallmark Christmas movies, terrible reality TV shows, speaking in hilarious British/Australian/Scottish/Not-sure-what-that-was accents, and in general a lot more laughing, dancing, good food and positive attitude than this house has seen in a long time.

What more can we ever ask of ourselves but to wake up each morning and ask: What’s within the realm of possible and what would we like to do with this day? The options may not be limitless, but we make choices. How we interact with others, whether it’s time for rest, achievement, reflection, a little fun, or doing something for others. Anne decided to take a chance when she came out here, not knowing for sure if she’d be able to arrange treatment to stay or would be going back home after Thanksgiving. We are so lucky that we were all working and learning from home (imagine that, disappointment becomes an opportunity) and in a position that she could come join our bubble.

If not, I would have never had the chance to listen to her teach classes and give oral exams to her students, connect with colleagues, present to a girl scout troop, plan for her sabbatical next year, keep building the strength and capacity of her university and department—she has such conviction, operates from a place of curiosity and caring that I’ve always admired in her.

I remind myself and my family often: Every life contains 10,000 joys and 10,000 sorrows. Both. It’s a package deal. Anne brought us so many joys in this six weeks of living together. I’m so glad she chose to come, and that mom was there supportive as ever not only to join us but to also to make the calls to transfer treatment and make it happen. 

This lovely (though long-ish) piece a friend forwarded me by Ann Patchett after Anne left expresses better than I can how being together brought about our “best selves.” 

It wasn’t a conscious effort, it was a natural consequence of being given a special opportunity. And also a pretty predictable outcome of focusing on someone other than ourselves. I thanked my family for being such wonderful people to share a home and this life with after Anne left. And this is my way of thanking Anne too for all the joys she adds to our list of 10,000.

If I could have just written a haiku, it may have been…

When time starts to shift

priorities refocus,

love and family endure.

Or a 6-word memoir inspired by her visit…

These moments, living life with conviction.

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From my bro-in-law Adam, who I describe as someone that is annoyingly good at an annoying number of things...

The girl who wanted to be the best at everything.

I met my future sister-in-law when she was 7 years old. The early images in my head of Anne don’t match the pictures in our photo album. Anne’s ambition and determination never matched her little body. My earliest memory of Anne was her outward skepticism toward me when her oldest sister brought me home to meet the family. I expected skepticism from a protective father, but not from a second grader. Perhaps this is why I’ve never attached age with Anne. She is the most timeless person I know.

Fortunately, Anne’s skepticism of me quickly faded. She was a bridesmaid in our wedding when she was just 11 years old. Her first dance with a boy was with my groomsman, Eli. It always seemed totally normal to me that Anne was part of the wedding party, that is until my daughters turned 11.

 Everyone in the family knows the story of Anne believing her mom when she was told as a young child that should could do anything. Most children will take their parent’s encouragement to dream about becoming a movie star, an astronaut, a professional athlete, or maybe even President. Not Anne. “Or” wasn’t part of Anne’s vocabulary. Anne wanted to be the best—not just the best at something—she wanted to be the BEST AT EVERYTHING!

When Anne entered her teens, the realization set in that she couldn’t be the best at everything. She yelled at her mom for “lying” to her. She cried and cried. The realization crushed Anne, but it didn’t defeat her. On both sides of my family, Anne is the 1st person to be a high school valedictorian, the 1st to be a division 1 athlete, the 1st to earn a PhD. She’s also the 1st to have stage IV cancer. 

As I was driving to pick up Anne from the airport, I wondered if the light in her eyes would be dulled by the cancer. I couldn’t imagine how it wouldn’t be. I’ve tried projecting myself in Anne’s shoes countless times over the past half decade, and each time I find it absolutely mind numbing. 

When I pulled up to the curb, Anne dragged over 200 lbs of ABC luggage, wearing what looked like to be an end-of-days nuclear-winter gas mask. She took off the mask when she got in the car. I was relieved when the light was still there. 

Although Anne’s childhood dream of being the best at everything remains a dream, she has become the best at the most important thing, and that’s living life. She’s an amazing human being, a true inspiration. It was wonderful having Anne live with us for the past few months. We never knew what would happen from one day to the next, but we definitely knew it would be worth waking up for, and everyday the light from Anne’s life brightened the light in our lives.