Guest Post: My COVID Caretakers

 As I said in my last post, I caught the 'vid up in Idaho over the holidays.  Since I ended up spending the better part of a month with the Idaho Crecelii, I thought a guest post was in order.  Please enjoy, courtesy of M&M.

We said goodbye and happy new year to Anne in December 2019 in Glade Park, CO and didn't get to see her for another whole year. Wait, longer than that -- 20 months? Winter in Glade Park 2019 to Summer in Glade Park in 2021. And in between those Dirty Boot reunions, gratefulness was hard to come by. There was just too much. Anne's cancer diagnosis, a pandemic, isolation, violence, ineptitude, dread. So our absence from family last year made New Year 2022 something we could not wait for. We had these Big Plans -- skiing, botanical gardens, Christmas lights, card games, trivia, and a week in the woods with meals around the same table as our people. Snow for days was in the forecast. And who would have thought that, after 20+ months of pandemic living, one of our best gifts would be a bonus week with Anne after she tested positive for COVID on New Year's Day? Stupid. Fucking. Covid.

Anne liked to tease us that she was our “fourth child” while she isolated in our office/guest room/exercise space. But the truth is, we were lucky to be able to care for her. Lucky to witness first-hand how Anne handled getting (Stupid. Fucking.) Covid with grace and calm and perspective. Lucky to overhear her contributing to her work over Zoom meetings. Lucky to absorb her trivia voice all the way down the hall with the door shut. Lucky that I got to vent and complain about all the things I usually get to vent and complain about over text with Anne, but now in person through a glass door with hand waving and eye rolls. Lucky that I got to do one of my most fulfilling things – disinfecting all the spaces. (Lysol helps me to feel in control and I was this way pre-pandemic. It’s fine.) Lucky that our kids got to see that this pandemic has the potential to bring our family closer and that all experiences have something to teach us, and to give us something to be grateful for.

And we just can’t stop feeling grateful about how it all turned out. Grateful that Anne’s symptoms were limited to congestion and a 12-ish hour fever. Grateful for vaccines and boosters. Grateful that our love language (food, complaining, and dancing) were comforting to her. Grateful that even one more week in hell (where we live) will sit in our memories with fondness and not fear or worry. Love you, Anne. Come back to Idaho soon and we'll do more complaining and dancing and eating but with less disinfecting and nose-swabbing.

Welcome 2022!

Happy New Year everyone.  Though this year feels maybe too eerily like the 20-21 transition?  Or, maybe that’s just because COVID is at the top of my mind this first week.  

I tested positive for COVID this past Sunday (at home, after a negative one, confirmed with PCR that evening).  I’m fine.  Doing well.  In fact, biggest symptom (fever) was clear Saturday night already.  I have limited congestion and assume I had the omicron variant as it has stayed in my nose, rather than my lungs (thankfully). 

The biggest impact it has had has been changing my plans to travel home from Idaho where I spent the holiday.  I’ve continued to stay here, in the “fishbowl” as we call it.  In reality, the office has a great view of the mountains, doors with windows to keep me somewhat still involved in the life of the house, and a really positive workstation, even if it’s a little low to the ground….

Seriously though, I can’t thank my Boise family enough for dealing with this.  They’ve been excellent caretakers and cooks, delivering better food than I eat at home.  The young nieces have been good about wearing their masks when needed and putting on the occasional dance performance to keep me entertained.  And, I’ve gotten to witness the impressive ability of my brother and sister-in-law to both do important work, from home, while taking care of their kiddos (and their extra house guests).  Kudos to everyone who has been in a similar situation throughout all of this, it really is remarkable.  

So, you might ask, how did I get it?  Well, not really sure actually.  The family (minus Mom and Grandma Tucci who stayed in AZ) gathered at a rental cabin a few hours north and one other family also has tested positive (total of 4 of the 13 of us) while others have been negative.  We were all responsible in travel and when in public spaces, but not together.  In the end, the tracing doesn’t really matter much and with as easily as omicron is transmitted, I don’t think we’ll ever really know.  I’m just really thankful that I and the others who tested positive have had mild to no symptoms and are doing quite well.  VACCINES DO THEIR JOB PEOPLE!!!  

While together, the fam and I had tons of holiday fun, both here in Boise prior to the trip to the mountains.    I’ve been dancing with my nieces, playing games, spending time in the snow, baking, etc.  The snow up by McCall was some of the best I’ve ever seen…you could see individual flakes, so much stuck to the trees…it was like a winter wonderland!  I’m grateful that I’m able to still be active (though the downhill day really showed my lack of endurance, although who knows if I was maybe already a little sick??).  We did multi-discipline snow activities (sledding, snowman building, snowshoeing, downhill, and Nordic cross country).  I only cursed my lung nodules occasionally, and even gave myself credit that not everyone with stage 4 cancer would be out doing these things!

The Cancer seemed to play far less of a major role this holiday season than last.  Having hair probably helps.  And, honestly, I wasn’t sure if I’d make it to this holiday.  Especially for New Year’s I was a little down, just with the unknown, but think this past year has pleasantly surprised me in how I’ve maintained my ‘normal life’.  Yes, of course I would have liked to find a drug that worked well, but I’m still here!  Still being too loud (for most), still not being capable of pacing myself in activities, still enjoying the kiddos.  I temper my expectations of course (I apologized to my oldest niece for the morbid thought of saying that my New Year’s resolution is to make it to next New Years…but, like, that’s what it is…), but overall am perhaps more hopeful than I was a year ago.  

My family is instrumental in my ability to deal and keeping my spirits high.  They don’t treat me with kid gloves, which I appreciate at.  They may scoff a bit at a morbid thought, but they don’t outwardly criticize or make me feel bad about it.  They talk about the future, they support how I’m going about things.  They are pretty fucking awesome to be honest.  And I’m grateful for getting to spend time with them, and the multiple hoops pretty much all of us jumped through to make it happen.  Love you guys.

My current treatment continues to go well (really glad I ordered another dose sent here to ID given my prolonged stay…) with no real side effects.  Another month or so and we will rescan to see what if any positive impact it is having.  I had labs before I left that showed really stable blood markers, so it’s perhaps really good timing I’m having my bout of COVID when I am not really immunocompromised, or at least not to the extent I have been for most of the past year and a half (it’s been 21 months since my diagnosis…what?!?).  

So we’re still up to our eyeballs in a pandemic, people are impacted by crazy changes in climate (thankful I don’t know of anyone personally to lose their home in the CO fires, but it can damn close to some of my best friends), there’s whacko vocal idiots at every turn, and I still have a terminal disease.  But the last 3 weeks have been restorative and sparked a lot of gratitude for the good things.  

Last year I downloaded the One Second Everyday app.  Essentially you upload a video or photo (usually mine are just Live Photos) from each day.  I don’t really record intentionally, which is why some days are pretty lame and more screenshots and randomness than anything else, but it’s a fun and relatively easy way to look back at the year.  A friend pointed out that my year was basically travel, cat, lab, travel, cat, lab.  It’s pretty true!  And I’m not complaining!  

Here’s to a 2022 of shrinking nodules, better discourse, action to preserve our planet, many more good times with my cat, in the lab, and with people I love!

Overdue Update

I'm a bit behind on what is usually about a post per month to keep folks up to date.  There's a variety of reasons, wanting more information, having too much fun, wanting to watch cheesy Christmas movies (do you prefer the return to the rural small town or the in a European castle romcom?)  Alas, it's a Friday afternoon, I'm still at work, but mentally checked out, killing time until meeting up with some friends for a holiday celebration, so here it goes.

Last time, on tales from Anne's cancer life...

I had gotten the news that the most recent IV chemo treatment had "failed" (rather, may have been working to slow growth, but tumors grew in size and number, which in the oncology world, progression=failure).  I was frustrated (understandably), particularly with the unknown.  Living more week to week than even month to month, waiting on appointments to be made, to have them, to make decisions. So, starting back at the beginning of November, my best recollection of events/thoughts/feelings (thanks to calendars, social media, and pics for the helpful orientation and reminders)...

First week in November:

I made an appointment to go to OSU to consult, get another opinion, check on clinical trials. November 23rd?! WTF. That's a long time to wait. Shit. Do I need to do another round of chemo in interim? Should I go since early October since treatment? Message my doc. He says enjoy the chemo vacation.

Later that same first week of November:

Cool, I guess I can go to Disney for that 10K!  Fun!  Wait, what, 16:00 min/mile time cutoffs?  I can't just walk it?  Damnit.  I guess I'll spend this week 'training' for this?  Man, I'm out of shape.  I better not fail.  I hate failing.  See below...I did not fail.  And, I even gave myself some credit.  Good self-care, Anne.

 

While in Disney...see the start of Christmas decorations and look at the calendar.  Hmmmmmmm...Mom is coming to Dayton for the OSU appointment and Thanksgiving, staying for the Immersive Van Gogh in Columbus Dec 3...there's some time in there to kill, wouldn't it be fun to come back with her and celebrate her 70th at WDW 50th and see Christmas?!?  Good thing she likes my crazy plans!

 

Second Week in November:

Business as usual, trying to not stew about the unknown, collecting data (yay science!), watching terrible basketball games, start planning Barb and Anne's Escape to Disney (side note: my google doc travel itinerary (yes, I'm a dork and make these for pretty much all trips...with links!) wasn't actually called this...Thanksgiving Fun with Mom! was the title used). Yes, I am bad at sabbatical (but a lot of this was very research focused!).  Oh, and fill out new patient forms.  That I had to FAX.  Yes, find a fax machine, dial a number, wait for the 'hook'.  WTF.  I also wrote a paper check this week for the first time since 2016.  Isn't healthcare fun?!

 

Third Week in November:

See above.  Work.  Bad basketball. Planning. Trying to not constantly google treatment options, survival curves, etc. 

 

Fourth Week in November:

Welcome Mom!  Let's stay in Columbus, where you flew into and kill some time before the appointment.  Conservatory, art museum, good food, new shoes for her for lots of upcoming walking.

The OSU Appointment...OSU's The James is one of the better cancer hospitals in the nation.  There's an entire Stefanie Spielman Comprehensive Breast Center (fun fact, when a UD softball player I twice played in a fall tournament named after her...full circle....or something).  It's all fancified, and there's check-ins and you see five people and they offer water and 'emergency snacks' (like, what constitutes an emergency?) and ask if the temperature of the room is ok, and are very kind and polite.  And I get it.  People who go there are scared and it's hard so they want to make it easier and control what they can.  Thing is, that's not my style.  I couldn't give two shits about the temperature of the room unless you tell me that changing it is going to help this fucking cancer go away.  I had to keep reminding myself that this was a 'first appointment' even though I feel like a bit of a cancer pro by now.  No, I don't need a 'chaperone' for sensitive exams. I'm sure some people love this, they eat it up, and it's why they want to be at the big fancy center (very similar vibes to Stanford).  Not me.  Give me my small office, where I can go in, they know me by name, my doc stops by my treatment, I pick up a Rx on the way out.  The fellow goes through the history, I impress my mom with my ability to remember things (making my notes helped, I think I only had to reference once).  I get frustrated when he is able to just take a photo of my genetic results I pull up on my phone and auto-load to my chart....I had to fax you motherfuckers paperwork!  What the hell.  We chat...there's maybe a trial?  He leaves and attending doc comes in.  He starts, as you have to with someone 'new' saying that stage iv disease doesn't have a cure and does lead to people's death.  

I know this.  I say this.  It still sucks to hear it.  And it sucks maybe more to hear it sitting next to your mom.

I can see the frustration on his face when he says:

"we have nothing to offer you".  

I don't qualify for any trials.  There's no secret drug that only academic hospitals use.  He has some thoughts of next steps, they parallel what my doc had said for the most part.  They'll keep my info on file and I should check in periodically.  I'm in the system now, so I can reach out if I need anything.  Speaking of the system, highlights of his notes below....I'm pleasant!!! 

Well, shit.  I thought this might happen, but there's always the glimmer of hope that maybe something was overlooked.  Nope. Send my doc a message...let's start something soon, Happy Thanksgiving, I'm going on vacation and will see you when I'm back.

Mom and I drive to Chicago to visit Grandma Tucci the next day.  We pick up our grocery store Thanksgiving meal.  I still have LOTS of things to be thankful for.  The night gets interesting with a trip to the ER for grandma.  She's mostly fine, other than being 95.  I spend 10:30am-4:30am waiting in my car in the parking lot (thanks COVID restrictions).  How do the homeless survive?  I have blankets, am running my heat every 20 minutes and am still miserable.  We manage to get her to see her eye doc the next day...normal age-related degeneration.  While at the doc, I watch our Dayton Flyers manage to beat top 5 Kansas in their holiday tournament! In Disney! What? They are in the Championship?  Hey mom, I'm switching our flights to earlier, we're going to go to the game, cool, right?  We drive back to Dayton, leaving Grandma doing pretty well.

Last Week of November, Start of December

As shitty and frustrating as the prior week was, this week was equally as great.  Really.  We watched UD take home the championship on Sunday.  

 

Champs!

We spent Monday in Magic Kingdom.  

  

"Magic" Photo with our Disney expert!

Tuesday, Mom's childhood friends that live in FL joined us and we saw a super cool Disney collab with Cirque du Soleil show and went to the after hours Christmas party.   

  

Snowing on Main Street USA!

Wednesday at Hollywood Studios and Epcot.  

 

Piloting the Millennium Falcon.

We rode almost every attraction we wanted to (duuuuuude, Rise of the Resistance is pretty damn sweet, even if you're not a crazy Star Wars fan and I may have to save my pennies for the immersive hotel experience), ate delicious foods, and had a great time.  

 

Eating around the world!

I did travel planner duties well.  It was awesome. Thanks mom.  I think we both needed that.

 

We came home, decorated for Christmas, I went to the doc for my monthly hormone suppression injection and confirmed the new treatment plan (see below), picked up some drugs and my steroid mouthwash.  Saturday, went the Van Gogh thing (NOT worth $50 and 90 min drive...though I found out there are 2 immersive things, maybe the other one is better?  Or maybe they are just good marketers?).  Either way, ended up Mom flew out a couple days early to head back to Chicago and pick Tucci up to bring back to AZ with her (a little earlier than she had planned). 

Which brings us up to present day and

Second Week in December:
Apparently I was a little distracted when talking with CVS Specialty in the middle of Hollywood Studies and forgot to add my apartment number to my address.  This led to a bit of excitement the  Friday we  were back and tried to track down my new drugs (pre insurance cost of ~$15000 for a 28 day supply).  They arrived Monday, safe and sound, and so the new regimen begins.

 

Good things come in small/expensive packages??

The main 'new' thing is a drug Everolimus (Affinitor).  It's targeted therapy, meaning it inhibits a specific part of the pathway in how cells work.  It's given in combination with another drug (Letrozole, aka Femara, an aromatase inhibitor) that is similar to the drug I was on for the 5 years I was in remission (exemestane, aromasin), that stops the body from making estrogen from other substances (I'm already on hormone suppression to limit estrogen produced by ovaries and such...yay chemical menopause!  Though I did have the thought it bed the other night that I probably have saved some money not buying any tampons for the last 6 years).  In a way, it's going 'backwards' in the progression of treatment, but since the chemotherapy drugs haven't been working as well as we'd like, it's worth trying this approach (hormone + 'enhancement') that has been promising in some trials, patients, etc.  It also gives my bone marrow a bit of a break from the overall chemical poison of the chemos I've been on.  Predictable side effects should be mild, if any (mouth sores, hence prophylactic steroid mouthwash rinses, fatigue, GI distress, etc).  There are some slightly more concerns changes that can happen in blood components like glucose/sugar regulation and lipids/cholesterol, but all things we will monitor and can be managed.  It's a couple pills a day, so very accommodating for scheduling, traveling, etc.  A few days in, and so far, so good.  I go in next week for blood work, check-in with doc etc.

So yeah, that's the update.  New drug.  Will check in a few months.  The year is winding down, which I think brings reflection for everyone.  I just checked the 'count up' clock I have of my 'metaviving' time (aka since stage iv diagnosis).  20 months, 2 weeks, 2 days.  It's been a bit of a strange past 12 months, a strange past 20 months, but I'm still here.  

As I put up my tree (I missed doing that last year when I was out in California!) and unpacked all my ornaments, it was a great trip down memory lane.  I started collection ornaments, I don't really remember when.  Some time in grad school.  It became my travel souvenir...generally small, cheap, portable.  It was nice to add a few new ones this year compared to COVID restricted, minimal travel, 2020.   Lots of fun times with beautiful people in beautiful places...my fave.

Consider this my Holiday Card to you and yours...

This holiday season, and always....

May more days than not be full of  joy, smiles and fun, 

May you feel the support and love of others as I do each day,  

Well wishes and my gratitude for what I have (hair! and a haircut since I know I'll keep it at least 3 more months!) and who I have it with (I see you Riley, hiding under that tree!).  

 

Happy Holidays friends!

Love, Anne

October’s Good, Bad, and Ugly

Happy Fall Y’All!  Apologies for the basic white girl opening.  But ‘tis the season! (Is there a name for mixing holiday catchphrases?!).  I was telling my students in Journal Club the other day how I bought a stencil to make a craft that says “Fall is my second favorite four letter F word”.  Hey,  I never said I was professional all the time, right?  Well, I never made the craft, as my craft eyes are often bigger than my stomach…hands?  Ok, time to drop the idiom-speak.  Anywho, it’s fall, which I like the cooler temps, the pretty trees…until it turns into Midwest winter, which is mostly just grey and brown.  Grey skies.  Brown trees.  I’ll miss that color.  As the month comes to a close, I’ll take a break from scrolling FB and seeing Halloween costumes to provide a bit of an update.

The Good

The Good of October was mostly in the early parts, as I escaped to California for a couple of weeks.  While I’m on sabbatical, I’m still ‘working’, mostly on research and then on some selected service-related responsibilities that are important to me.  My teaching and advising has been put on pause, which while I miss my students and those connections, is pretty great, and generates a lot less email.  So with some things still being remote, I figured I could afford to hop a few time zones over and visit family, celebrate birthdays, and otherwise enjoy a bit of an escape.

After I arrived, I remembered why time zones suck when I had a 5 am meeting the next morning, but despite a couple early wake ups, it was a grand time.  My sister and fam are so generous, my mom was there for a bit, my brother-in-laws parents, the weather was pretty great, the accommodations stellar, and even got to meet up with some FD friends that weren’t too far away.  Add in my niece’s dominating in doubles on the tennis court, birthday celebrations, bike rides, fun food and it was definitely a good time.

 

I came back to a Riley Cat that missed me (though she was VERY well taken care of by her new friends that checked on her), research projects ready to roll, and much cheaper gas prices.  I generally go to the office most days, but have some flexibility as well.  I may still be “bad at sabbatical” as my sister told me (and I agree with), but I’m learning to find a better balance.

The Bad

One of the things I came home to was my 3-mo scans, checking in on the latest chemo treatment (Doxil, aka doxorubicin/red devil, but coated so it’s a bit easier to tolerate) that I’ve been getting.  My new place is near a large hospital in my preferred network, so scans got scheduled there, both a bone scan and CT.  For the nuclear bone scans, you have to get injected with the radioactive dye and wait a few hours, then return for that scan.  They were able to complete my CT scan when I was there for the injection, before I’d head back.  In the in between time, rather than work, I watched TV back at the house, as I was having a normal level of scanxiety that I’ve grown pretty accustomed to.  While laying on the bone scan table (they wrap you up kinda like a burrito, and while some might find it claustrophobic, I actually really like it and almost fell asleep), I thought to myself, “maybe the CT will result while I’m being scanned”.  The tech finished, I grabbed my phone and saw the notification that a new result had posted to MyChart.  

Wanting to maintain some level of privacy, I resisted the urge to immediately check it and waited till the car.

Fuck.  Fuckity fuck.  God damnit.  Text the family.  Text a few friends.  Wait till Mom has likely read it and then call her. I wouldn’t be meeting with my doc until Friday (this was on Tuesday), so some time to process.

Thanks Mom, for reminding me, it’s not that it isn’t working at all (if I wasn’t poisoning my body for the past year, who knows where I’d be today!) just not as well as we would like.  Stable would be sufficient.  Regression is preferred.  But progression?!  In size AND number.  Fuck.

I threw a bit of a pity party for myself the rest of the day.  Wednesday was a busy work day, which was probably good to keep me occupied.  Thursday I had to take my car in for maintenance and spent the morning on clinicaltrials.gov.  I hate to say the phrase “I did my own research” in These Times (TM), but I did.  I searched by keyword (~230), I screened by title/intervention (~60), I dove into inclusion/exclusion criteria (6).  I looked at what standard treatments there might be.  I reviewed what I’ve already done (it’s a lot so it’s easy to forget!).  

I made is less personal, more clinical.  I coped, in the way that I do.  Well, if my initial “I’ll have 3 good years” was correct, I’m about on that track right now!  I sent a couple friends the actual pictures…they’re visual like me.  I had asked for my scans last time because of this..I wanted to see these fuckers.

That’s July, so more and bigger (the light spots, these are one slice of the CT) since then.  They are still relatively small, hence why I’m not symptomatic.  The bone scan resulted on Thursday…while the sternum is stable, there’s maybe a new small spot on a rib.  Bigger fish to fry.  I had a well-timed therapy appointment Thursday afternoon where I could basically review what I have here.

A few days to sit with it till I would see my doc, make a plan…which brings us to…

The Ugly

The Ugly is the unknown.  The Ugly is a plan in progress, but no real answers.  The Ugly is seeing on your doc’s face, genuine frustration.  The Ugly is wishing there was a next best step.  The Ugly is the look from the chemo nurse when you say you’re not getting treatment today and she’s smart enough to know it’s because it’s not working.

I arrived at the appointment and asked if I needed to get blood drawn, if they should put an IV in, because I figured we’d cancel treatment.  As the medical assistant relayed this to the doc, he replied “oh, so she already knows”.  Of course I do.  So we got to chat, chat about what we’ve done, what could be next.  There’s a few remaining chemo lines that could be tried as single agents (the ones I had looked into, noted as next steps).  We could rebiopsy but doesn’t seem necessary right now.  before the appointment I had decided I wanted to get referred up to OSUs Cancer Center….remember those 6 trials I might qualify for? One is at OSU.  

A trial isn’t necessarily the answer, but since the regular big guns aren’t working well enough, the more targeted/specific drugs that are in development may be the way to go.  A friend who had consulted with OSU had good things to say.  My doc, as always, was supportive.  He understood why I’d rather do that than Indiana (a 2.5 hr round trip vs 4 would be nice), but was still going to call and consult with the Indiana doc (will call me back next week). 

 I’ll try to have a plan by Thanksgiving, figure out what and where I want to do the next thing.  A break for a bit (though not from the continued monthly hormone treatment and injection to support my bones).  I’m not looking forward to the appointments, the new docs, paperwork, processes etc.  Should be easier since they are on the same electronic medical record system, but still takes some work.  And yet, I’m grateful I have a super flexible schedule right now, good insurance coverage (just did open enrollment, yes I will be maxing out my FSA again in anticipation of probably reaching my max out of pocket and that gets me a good chunk of the way there), the capacity to have major med centers relatively close, reliable transportation, and that I’m feeling well enough to do these things.  

After this kind of news, people ask how I’m doing.  It’s such a tough question.  I’m fine?  I’m sad? I’m pissed?  I’m glad I can understand all this shit?  I’m grateful?  I don’t know.  I just sort of am.  I know I shouldn’t eat my feelings, and yet I do.  I take time to veg, but I uphold my responsibilities.  I can distract myself with work.  I cuddle my cat.  I am continuing on.  Continuing to “fight” in as much as fighting means letting the years of science and millions of dollars of research hopefully extend the good days.  I am glad October and all the breast cancer attention is almost over.  

I wish I knew what the future would hold. When the first appointment will be, what the treatment will be, how will I feel, how will it affect me? The unknown is the ugly.  So rather than even planning 3 months ahead right now I’m basically planning 3 days.  That trip to Florida to do a Disney run and visit a good friend that’s scheduled next week?  Sure…for now…. 

I’ll post updates as I can, but may wait till there’s actually something to say, till I know a bit more.  Till then, to end on a less serious-note, in my vegging and pity partying I’ve watched a lot of TV lately, some recommendations/comments, beyond Squid Game (which was fine)….

Salvage Kings - Canadian demolition company that salvages stuff and sells it.  Why am I so intrigued by watching Canadian men work?! (Remember Big Timber?!).  Netflix.

Dopesick - Hulu original.  Tough to watch, especially coming from a place the opioid epidemic hit hard.  But well done…probably a good thing it comes out weekly so you can’t binge all at once.

Babysitter’s Club - Netflix.  I wasn’t a big fan of the books (Boxcar children was my jam and I was too much of a tomboy to get into these).  This show is great.  Progressive.  Clean.  Pure.  Great escapism.  

Clickbait - Netflix.  Maybe it’s because I never watch Entourage, but I can’t see Adrian whatshisface and not just constantly picture him with Sabrina the Teenage Witch née Clarissa Explains it All, in Drive Me Crazy.  God the 2000s were the golden age of terrible teenage movies.  (Speaking of, the He’s All That reboot, eh, it was fine).

Baking Impossible - Netflix.  This one we actually found and watched in Cali.  Good stuff, competition show of bakers and engineers…except the phrase “bakineer” is lame. 

The Movies that Made Us - Netflix.  I like the behind the scenes look, even if it generally doesn’t include the main star.  Fun facts about Coming to America?  Pretty Woman?  Back to the Future?  Yes please.

And there’s a new season of Below Deck! It’s the little things you guys…

Cancer Camp and Settling in to Sabbatical

 It’s Monday morning and rather than having a ‘normal’ routine of getting up and heading to the office, I decided to clean my house.  I could (should) have done it yesterday, after getting home from a gold-medal performance in the annual corn maze competition and a less-than-stellar pretzel festival (with minimal pretzels).  But alas, instead I watched the dominating end to the Ryder Cup (one of sports’ best events) and a sub-par movie I couldn’t remember the plot to (Oblivion w/ Tom Cruise).

Welcome to sabbatical.

First, let me get out of the way that the idea of sabbatical is sort of crazy and also brilliant??  I time for focus and refresh?  That you ‘earn’ periodically?  Perhaps this is one thing us silly academics have gotten right.

Am I getting sabbatical right?   It’s hard to say. It’s an adjustment, for sure.  I’m sort of treating it like extended summer, and since I’ve always worked over summers (and had research support) that maybe makes sense?  But in reality, I’m still trying to figure out the best balance.  How to not feel guilty about the free scheduling and taking time when I want it.  How to set a writing schedule and actually stick to it.  How to balance being here as needed and yet taking advantage of the flexibility.  Throw the whole terminal cancer thing on top of it, and it’s quite the interesting mental problem!  

I’m not required to do any ‘service’ activities at work…go to meetings, do all the things besides teaching and research that we do.  But it’s really hard to stay away.  Hard because I care (which ultimately is a good thing) and hard because as a childless single person, for better or worse, my work is a big part of my legacy.  The students I’ve had, the programs I’ve helped change and grow.  My influence comes largely from my work and the people I’ve interacted with there.  So, knowing that the years may be limited, it’s tough to convince myself to fully ‘take a year off’.  Because what if it’s my last year?  What if there isn’t time after to get back into things?  So I still pay attention, and engage.  And actually, that whole ‘space to think’ thing really actually makes it easy to think and ponder the good and bad and future of what the work means.  So the current challenge is to be nice to myself and not feel bad and beat myself up over it.  

I’m privileged to have projects going that will move forward, so the ‘success’ of my sabbatical work (from the research side) will happen, I’m not worried about that.  It’s more this balance and making sure that I do get that sense of refreshment that I’m more concerned with.  #academicproblems #spoilediknow #noticeandname #notcomplaining

Since last posting, in addition to settling in to sabbatical I settled in to the new place!  I’m loving it!  While I spend more time in my car for sure, the openness, daylight, and garage are great.  I’m still on the struggle bus of getting back to my workout routine, but the home gym gives a daily reminder…. The purging I did prior to moving was helpful, and I’m feeling less cluttered.  Refreshing photo frames also reminded me of all the wonderful people and places and memories I’ve been lucky to have.

Gallery walls…a pain in the ass to hang, but great to look at…

Riley Cat managed to do well her first weekend alone, last week when I was lucky enough to go to…CANCER CAMP!

This time around it was through a great organization, Casting for Recovery.  

CfR hosts retreats for women with breast cancer and teaching fly fishing.  The tagline ‘to fish is to hope’ may seem a bit cheesy, but I see why they use it.  Friday afternoon I found myself driving to central Ohio, NE of Columbus for what I thought would be an enjoyable weekend.  I had some apprehension about the amount of ‘support-group-like’ time we’d spend (since that’s not my favorite) but the agenda seemed filled with enough activity.  And hey, it’s free, it’s outside, and since taking a class in CO I’ve always wanted to fly fish, so may as well take advantage of the ‘perks’ of cancer.

From my arrival, I could tell these people were serious about the ‘pampering’ we were to enjoy (they wouldn’t even let me park my own car a mere 50 feet from the front door, and carried my bags to my room).  I was an earlier arrival, but over time, a number (10 I think) of wonderful women arrived.  There was a mix of more recently diagnoses, those who had survived for awhile.  I think I was the youngest, though not be a lot (and the ladies were young in spirit!) and I think the only metastatic.

The weekend was planned really well…enough of the emotional shit with enough activities to keep us busy.  Having a winery next to the lodge was also a benefit.  I sometimes find it hard to get out of professor/facilitator mode and really just relax and enjoy, but I had a great time.  

Sunday we got on the water after practicing casts, learning to tie flies, and the basics of fly fishing.  I caught a few (one literally jumped on my line, at my feet) and enjoyed the time with my ‘river helper’.  The generosity of him, the staff, and the many, many supporters of the organization and event is really remarkable.  We got so much swag! Thoughtful gifts, useful gifts, tasty gifts.  We were truly showered in love and support, from many people we hadn’t ever met.  

The further you hold it from you the bigger it looks…

 

Wooly Bugger!

Sometimes I feel a little guilty about this…I’ll be honest.  Like I didn’t do anything to get cancer.  And all I’ve really done is listen to my doctors, take my meds, do the thing.  Have a really ‘earned’ this love?  These gifts? These opportunities?  Maybe since being stage 4 it feels a bit more deserving.  Hard to say.  And yet I’ve also had it ‘worse’ than a lot of other people, and I don’t really criticize them for it.  And the cancer camp experience does help.  It helps me be ‘good at cancer’…which I also feel when I’m there.  Staying in the moment and not being judgmental…much easier said than done.  And also, I definitely put my name in for more cancer camps that I found out about while I was there! (Colorado? Hawaii?  Yes please!)

So what’s next…treatment on Friday, which makes 3…which means we’ll rescan in a bit, after I escape to California for a couple weeks.  We will see if the magic koolaid is doing anything and I’ll learn more about what the next 3 months may look like.  I got my COVID booster a couple weeks back, had a day of suck after, but well worth the increased protection.  

In the meantime, I’ll enjoy my slow mornings of breakfast and coffee while reading my Daily Stoic.  And, try as much as I can to live out what I wrote on the prayer flag at cancer camp…

Overdue Updates

 It’s been over a month since I last blogged, and what a month it was!  All good things really, so that’s the summary…things still good, living my best life, etc.  For those interested in more details, read on.’

Last I left you, I had just spent some amazing family time in Colorado at the ranch (which is in the final process of being sold…a long time coming, and a good move for the family.  How lucky we all were for so many great times there!).  I was only home for a night and then I was off again, this time to Lake Placid NY!  A collaborator had invited Paige, my summer research student and I to join his group doing some field data collection at a rugby tournament hosted there.  The project has been a multi year effort to collect data post-match, specifically looking at concussed players.  In the ‘say yes’ spirit, I agreed and worked it out for Paige and I.  We flew into Burlington, drove over to NY (via the ferry!) and spent some time walking streets of Lake Placid before the rest of the crew arrived.  The next few days were hard, rainy, busy work, collecting a ton of data.  We planned a couple extra days on the back end, and spent them hiking, bobsledding (did you know this is a thing at the Olympic training center?!), and eating good food.  I’m so lucky to have such a stellar student and one who was pretty fun to travel with.  It was great to be able to show her new things (staying in a B&B, new foods, always jump in the lake! etc) and she was great company.  She also arranged the sweetest gift…a photo book including notes from lab alumni over the years.   It was super heart warming and something I‘ll always treasure.  If you haven’t been to the Adirondacks, I highly recommend!  So beautiful.  It was fitting my only other time there was my first First Descents trip, more than 5 years ago.  A lot has changed since then, but it’s still a beautiful place.

Back home, it was a busy few days of getting caught back up at work, working on some projects, and then it was time for Treatment 1 of the new drug, Doxil.  Doxil is the ‘red devil’ or ‘magic koolaid’ as I prefer to call it.

It’s fairly common to have a reaction the first time, sort of like an allergic-type response.  I did, but it cleared with some additional steroid and benedryl.  Points towards my ‘best cancer patient ever’campaign in that the nurses said I was probably the calmest person they’ve ever seen who was starting to have a reaction!  Probably was able to keep my cool because I remember the feeling from when I got a similar drug first time around.  Since then (it’s really impressive how fast cancer progress goes) they’ve reformulated it so it better targets just the cancer cells, meaning that I should keep my hair! As grey as it is :). The side effects were not present—>minimal.  Perhaps a little fatigue, which is such a hard thing to really judge.

After treatment, I enjoyed spending time with my good friend Kevin that was in town for a visit as well as an old college friend Rachel who was visiting her in laws.  I’m so lucky to have long term friends that I can be totally honest with…whether it’s talking about end of life decisions, finances, the latest meme, and everything in between.  

Since I’m on sabbatical, I had strategically planned a backpacking trip in northern Michigan the week before classes started in order to force myself to disconnect from the meetings, emails, preparations for the semester.  I drove up to Lansing and from there, Erica, Ted and I headed up to Painted Rocks in the UP.  

So.  Amazing.

Seriously, what a beautiful place!  There’s a 50 mi through hike of backcountry sites…Erica and I did about half, (3 nights backcountry), Ted did the whole thing.  20+ miles of hiking with 35 lb pack…take that you stupid lung nodules!  We also kayaked, explored Grand Island, and I had my phone in airplane mode and didn’t use a screen for 6 days.  Magical.

We totally lucked out on weather (it was perfect).  Hiking with 2 other physiology professors was probably a little nerdier than some might like, but was perfect for me.  I got some pretty gnarly blisters that I toughed out (Erica tells me I downplayed it a bit much…), the black flies were super annoying on some beach afternoons, but overall, it was just a really great time.  10/10 recommend.

I was heading to Chicago for Tucci’s birthday after and it worked out I got to drive through and see Sonja at her place in Iron Mountain (I essentially circumnavigated Lake Michigan on this trip).  It was great see her and her people, even if for just a night.  I arrived in Chicago on the day of Tucci’s 95th birthday celebration.  That stubborn ol’ lady still hanging in!  It was great to see some cousins and extended family.  We celebrated Monday, her actual birthday with Portillo’s cemetery trip, and driving around ‘the old neighborhood’.  It’s kind of crazy to think of everything she has seen in nearly a century of life!  Thanks to technology we connected with the whole family one day on FaceTime…it’s understandable how it’s hard for Tucci to keep track of us all!

From Chicago, Mom rode back to Dayton with me to help with the big move!  As I said before, I was downsizing/simplifying a little from the house I was renting to an apartment home rental, a little further in the ‘burbs, but with no yard work, single story, attached garage, etc.  Mom is a packing machine!  We figured out she’s helped with 11 moves and in that time only one kitchen item has ever broke.  She’s seriously like a professional!  We divided the work over a few days (I of course had to draw up a schedule), with some days having me go to the office for a bit to get some work done.  Movers came on a rainy day (ugh) that thankfully lightened up, and we unloaded on Tuesday and then spent the next couple days unpacking.  It felt slow to her and I, but being totally unpacked in only 4 days isn’t too terrible…

I love the new place! It’s bright and clean and my stuff works really well in it.  I’m excited for a dishwasher and a big kitchen and the garage is already coming in handy.  Riley has adjusted well, finding plenty of new places to explore (she’s mastered the counter, fridge, top of cabinet move).  

It was so great having Mom here for 2 whole weeks!  We got to visit with friends, see folks she had met on study abroad, had some really delicious meals, watch a lot of tennis, and in general spend some quality time together.  Mom also got to accompany me to a doctor’s visit, where all was well…the plan will be to rescan in November to see if the Doxil is working.  My doc is keen to work around holiday schedules (Chicago for Thanksgiving with Mom and Tucci, Christmas in Boise followed by whole family fun through New Years), which I appreciate.  I had treatment 2 on Friday, and all went well again.  Hard to tell if the napping after is really due to the drug or just because my couch is pretty damn comfy :). 

Yesterday, Mom and close friends helped celebrate my 36th birthday.

I know you’re not supposed to say what you wished for, but I’ll share…I wished for another birthday.  They hit a little different when you have a terminal disease, I’ll be honest.  Mom kept saying that if she didn’t know better, she’d not think I was ‘sick’, and honestly, this past month or so, I’ve probably felt the same.  I hiked, I packed, I did what I needed to do.  But there was also a lot of time for reflection.  Floating in a mountain lake in NY, hiking the ridge looking at Lake Superior, sitting in zoom meetings (at home, in Chicago, in the chemo chair).  A lot of thinking has gone on.  

I wish I could be more profound or articulate better where I’m at or what it all means.  For now, I really am just focused on trying to enjoy the moment.  The bit of respite that sabbatical has provided has been welcomed (though I think it also shows me I couldn’t not work/do something).  The people I’ve gotten to spend time with are so special to me.  As part of moving, I purged A LOT.  For many reasons, I think it’s always something you should do when you move, I reread Marie Kondo’s Art of Tidying, and practically speaking, at some point when my family has to go through my stuff when I’m no longer here, it’ll be less for them to do.  I’m a bit of a sentimental pack rat so it wasn’t the easiest task.  I did take the KonMari approach though of thanking things for their service…for what they’ve done for me, or in my life.  It’s a little cheesy, sure, and Mom was cracking up sometimes, but it’s true!  I am grateful! And it does make it a bit easier to pass things along.  Gratitude has maybe been one of the best strategies I have to deal with the shit parts of life, so I might as well apply it to downsizing as well.  

So this past month plus, I’m grateful…for the travels, the time off the grid, family and friends, a successful move, and a birthday.  Upcoming I have a fly fishing trip in Ohio with a cancer group, getting back to working more, a trip to California in October, a COVID booster shot on Friday, and a treatment the first week in October.    Until the next time…