Anne's Final Words

While not in her customary blogging style that we all love, Anne’s family and friends will close her blog by sharing Anne’s own words.  She took the initiative to write her own obituary below.  We also pulled from her last full blog post her wishes for us as we continue on in life. She helped decide where donations in her memory could be made.

Anne was a remarkable family member, friend, and colleague.  Her impact is long lasting and she will live on in our hearts. 

Obituary:

On February 26, 2023, the limits of current medical treatments were reached and Anne R Crecelius died peacefully from metastatic breast cancer in hospice care at home surrounded by her loving family.  She is survived by mother Barbara, sisters Karyn (Adam) and Sarah (James) and brother Marc (Marisa).  She loved her nieces (Carmen, Annabelle, Alice and Violet) and nephews (Colin and Myles) and dearly missed her departed father Lee.

Anne was a Professor at the University of Dayton, having achieved this final academic promotion in the year of her passing.  While she did not have children of her own, her students became like her kids and are a part of her living legacy.  She mentored students in her research lab, taught with energy and passion in her classes, and connected with students through advising.  The University of Dayton community, which she first entered as an undergraduate in 2003 and returned as a faculty member in 2013 after obtaining graduate degrees at Colorado State University, was her local family.  Colleagues across the institution became friends, and Anne’s influence was far ranging through countless committees and service obligations.  Her influence was not limited to her local institution as she was also active in nationwide efforts towards advancing physiology education.

Particularly after her initial diagnosis of Stage IV breast cancer in 2014, but even before, Anne took a ‘say yes’ mentality toward life.  She loved to travel, enjoy the outdoors, try new things, push herself physically and mentally, and was a tremendous friend.  In her last years, she continued to explore and spend time with those important to her, all while maintaining a productive work life and receiving treatments.  She chronicalled her story on her blog that was read by hundreds.   She wrote professionally about how she incorporated her diagnosis into her teaching and received several accounts of inspiration from near and far.

An initial prayer service will be hosted immediately today February 27th, 2023 at 2:30pm ET on the University of Dayton campus https://www.youtube.com/watch?v=2jXiP3aQ29I

Details on further memorial celebrations are to come.  

In lieu of flowers, donations are requested to: 

American Physiological Society www.physiology.org/donate (Select “Anne Crecelius Memorial Fund”)

University of Dayton https://www.givecampus.com/campaigns/26067/donations/new (The Professor Anne R Crecelius Fund for Innovation in Learning and Teaching)

Metavivor https://www.metavivor.org/take-action/donate/

Other wishes from Anne in her last post:

“Talk about death with someone you care about. Yours, mine, theirs, an aging parent's.  You think I might be joking, but I'm not. The conversations I'm having, the decisions I'm making are not easy.  But, it's something I've been thinking about for awhile, talking about with my family and it makes it far easier.  What are your priorities and wishes?  What is in order vs not? Please, have a hard conversation.

Add a note to the public kudoboard my dear friend set up https://www.kudoboard.com/boards/ByEKeBxB

Support each other.  Really...I know that this is hard for others too, so please, take care of each other while I focus on taking care of myself.”

We will miss you dearly, Anne, and carry you with us always.

First Week Home on Hospice Thoughts

Wow, the outpouring of support this past week has been pretty incredible.  I’ve heard from near and far…from long lost childhood best friends to the people I see everyday.  So many of you have shared with me good thoughts, the influence I’ve had. It’s all pretty overwhelming.  It’s a good thing I’ve been engaged in some deep work around self-love and self-acceptance otherwise I’d really be screwed trying to accept all this love!  And lots of you have had those hard conversations around death and dying…good work!

Home from hospital with my new O2 concentrators

This first week at home has been pretty interesting.  We were set up with the two oxygen concentrators that deliver up to 10 L/min O2 each (almost 100% O2).  This helps relieve a lot of my anxiety over not having enough oxygen in the house vs at the hospital.  Upon arrival at home, that night a hospice nurse came to check in.  It would the first of many visits from hospice folks over the next few days.  Respiratory, LPN, social worker, my main nurse, the docs, etc.  My main nurse/care coordinator will visit at least once a week to check in, while the others are on-call.  There’s a 24/7 number we have that connects to nurses so that’s another helpful support.  As I get closer to the end, we can move to a critical care team where a nurse will be around consistently and able to deliver comfort meds like morphine and Ativan to ensure a peaceful end.  That’s really my main goal, which they seem to support…making sure that my last breaths aren’t panicked or gasping.  They seem to think that’s a reasonable goal.

Thanks Andria for my spirit animal sloth…fondly named Stuie

Among the visitors from hospice have been a steady stream of friends and colleagues coming over to visit.  It’s great to catch up with people, hear what’s going on, and I imagine good for them to see me too.  I’ve been able to work a little, zooming into meetings and such.  Mom is getting quite the education in the dynamics of higher education listening to these convos!  

 

Visitors from near and far!

The past two days have been a little less great than others…needed to turn my oxygen up a bit at times.  I’m trying to not obsess about my oxygen saturation numbers and go more on how I feel…but it’s hard for me to not collect the data!

I credit my mom also for dealing with how I deal with things, which is mostly out-processing and talking through things.  My wishes for celebrations of life, dividing assets, etc.  We’ve covered pretty much all of it.  I finished a book I highly recommend A Beginner’s Guide to the End .  It’s a really nice, easy to read coverage of a lot of important end of life topics.  It’s sort of the What to Expect When Expecting but for a different important transition in life.  

Happy Valentine’s Day!

I would have thought I’d be blogging more, but honestly my days have been pretty full!  Between working, visitors, and the occasional nap, I’m usually tied up 8-6.  Then eating one of the delicious delivered dinners and it’s basically time for bed.  But I’d rather be busy than laid up in bed!  I’ll for sure update with any major changes…for now it’s mostly status quo at home.

Queen Riley enjoying the new mobility aides.

A New Phase

Hi friends.  Some of you may already be aware of what will come below, either because you've seen a similar message on UD email, text or passed along by others.  It's pretty difficult and semi-overwhelming to keep track of updating people as I'm blessed to have many people from different stages of my life that care about it.  So please don't take any offense to the order in which you hear news these days.

First and foremost, thanks to everyone for your kind words, thoughts, prayers, and support during this time.  Anyone who knows me knows I appreciate clear and open communication, so here's my attempt at it! 

Health Update/Status

On Monday 1/6 I went to the emergency room after struggling to maintain my oxygen saturations at home, despite the supplemental oxygen I've been using since December.  This was similar to what brought me to the hospital for a brief stay right after Christmas.  The breast cancer that has metastasized to my lungs (and liver and some bones) has been stubbornly resistant to all of treatments we've tried in the past 2+ years since I was diagnosed stage iv in March 2020.  Nothing 'else' on top of my cancer progression is happening (e.g. infection, etc). And, we've exhausted the treatments for the cancer.  So with my discharge on Friday, we've set up hospice at home to help support the new phase of really prioritizing my comfort rather than trying to treat the disease.  Fortunately, providing lots of oxygen support and taking things slowly (the hospital doc told me my new spirit animal is a sloth!) has so far been doing its job to keep me doing well.  We'll continue to manage symptoms as things progress towards the end (on a timeline that it just really unknown right now).  Back in October, I made the decision to not teach classes this semester and do modified duties, so I have a fair amount of flexibility work-wise.  The next step/stage will be a more significant draw down towards full leave from work.

Support and Needs

I'm lucky that my mom has been able to be here with me, and over the past month or so have had a number of out-of-town family and friend visitors to support me.  My UD family and local support is also strong and for that I am so grateful.  Really, there isn't much right now that we 'need'.  Really.  But I know that folks want to help, so here are some ways that you can support me now and in the coming time, however long that may last.  Some of these obviously lend themselves more to local folks...I'm trying to brainstorm ways for those further away (there are many of you!) as well. If you have ideas, please share.  At this point I"m in good enough energy/capabilities that I can 'handle' pretty much whatever.

• Talk about death with someone you care about. Yours, mine, theirs, an aging parent's.  You think I might be joking, but I'm not. The conversations I'm having, the decisions I'm making are not easy.  But, it's something I've been thinking about for awhile, talking about with my family and it makes it far easier.  What are your priorities and wishes?  What is in order vs not? Please, have a hard conversation.

• If you'd like to bring a meal or make a visit to me at home, please let me know via this calendar/spreadsheet.  It's an attempt to keep things organized and spread the love.  Right now, all is welcomed and when/if that changes, I'll let folks know.

• Add a note to the public kudoboard my dear friend set up.

• Reach out...text, email, etc.  Please just know that if I don't respond (promptly or at all) it doesn't mean I don't appreciate it!  

• Support each other.  Really...I know that this is hard for others too, so please, take care of each other while I focus on taking care of myself.

• Stay tuned.  There will be more to come in ways to support and things are changing day by day it seems. 

  I will likely update the blog more often than I have been.  I'll try to remember to add to FB and emails and whatnot.  But also please know that no news does not necessarily mean bad news.  When the end comes, folks will be informed, there will be services, funds to support, etc.  Don't worry about that.  Until then, I will attempt to find a balance of my "out processing", staying in the moment, rest, work, etc.
  

  To no one's surprise for people that know me, I have a lot to say!  About the past week, about hospice and what it really means, about the things I've been thinking, etc. It isn't going to happen this second or in a single post (she writes to remind herself).   Patience is appreciated, and necessary!

  Till then, I'm going to rest up a bit for football later!
  

Ups and Downs to finish '22 and start '23

Strap in for a long one y'all.  It's been an eventful few weeks...  I'll quick recap at the end, so feel free to scroll down for the overall summary, but for the sake of storytelling, won't spoil anything right off the bat.

As the title might suggest, some serious ups and down since the last time I updated in mid-December.

UP: Christmas Cruise with my Chicas!

The Danube River Cruise with my mom and sisters was fantastic!  The minor down was feeling pretty low energy most of the time, having little endurance, and needing my oxygen, but truly just a minor down.  

My trip out was fine...except for the weirdo in the seat next to me out of Dayton who was texting her friend about my "respiratory issue" and literally took a selfie picture of me (WTF).  At least be more sneaky about it like I was...

Our arrivals went smooth-ish, with Sarah and my mom not receiving their bags after a tight connection in Munich.  And, well, they never did...  well, at least not until we were all back stateside.  They were both champs about it though, borrowing some clothes from Karyn and I and making do.  The Uniworld boat and service was fabulous, super delicious food (though we definitely didn't make as much use of the included drinks as others did).  

In order, our ports/stops were pretty great, a few highlights below:

Budapest, Hungary: Great architecture, our first experience of the Christmas Markets with so much delicious food and interesting handiworks.

Bratislava, Slovakia: Another beautiful capital city with fun markets.  Less of a busy day which allowed us to catch our breath a bit.

Vienna, Austra: Wow.  So many gorgeous buildings.  We spent some time in art museum, exploring markets and churches. In the afternoon we ventured on our own to see Klimt's famous works (Sarah's favorite artist!) at the Belvedere.  I really wish I had paid better attention in history class, as I sort of forgot about the dominance of Austro-Hungarian empire, Vienna as capital, etc etc etc.  We went to a private concert for boat guests that night which was really entertaining. 

Krems and Melk, Austria:  Mom and I skipped these smaller towns along the river, deciding that a day of rest was a better idea.  We had some scenic cruising during the day, playing cards and just hanging out.  Sarah and Karyn went off ship in Melk in the evening, but Mom and I were happy to relax and restore some energy.

Linz/Salzburg, Austria: We docked in Linz and took a bus the ~2 hrs to Salzburg (watching The Sound of Music along the way!).  Luck would have it that a colleague of mine who is from Austria was back home visiting his family for the holidays and willing to come and give us a private tour!  It was so great to see Josef and meet his wife and daughter.  Having gone to high school and college in Salzburg (his village is a short train ride away), he was able to give us tons of great info and point out all the sights.  Upon his suggestion, we ate. lunch at St. Peter's, the oldest restaurant in the world!  From 803!!! What?! It was fabulous. The ambiance, the food.  Such a treat.  We capped the afternoon off with a cheesy but fun carriage ride before saying our goodbyes and giving thanks and heading back to the ship.  I'm not sure if it was the city itself, the tour away from a crowd and without an earpiece in, or just being with friends, but I think it was my favorite day/city.

Passau, Germany: Our last stop was a smaller river town in Germany.  It was a lovely, very manageable city.  We "enjoyed" an organ concert from Europe's largest organ (enjoyed being in quotes because, well, organs are loud, and kind of striking, and yeah....it was cool, but not something I want a recording of.  It was also 40 degrees and cold in the church), we browsed markets and found our last souvenirs/gifts, and enjoyed (no quotes needed) a half-meter long sausage along with other delicious treats.  

Mom and I left suuuuper early (like 2:30 early) for the Munich airport for our journey home.  My Christmas treat to my mom was upgrades on the way back which we both thoroughly enjoyed (Delta One Suites are definitely not worth the like $4K price it sometimes is, but was worth what I paid).  

In Amsterdam we opted to get a cart to help make the trek to our connecting gate.  Between mom's arthritic knees, my lack of ability to breathe well and a couple loaded up carry-ons, we were struggling a bit with mobility. It was well worth it, considering it took us almost 10 min in electric cart!  Based on that I made a similar request for when we arrived in Atlanta, which was also helpful (and streamlined customs).  I'm still getting used to recognizing my limits and making the necessary accommodations, but it was a good lesson in how help can be, well, helpful.  

Overall the trip was an amazing opportunity to spend time with my sisters and mom, see new sights, and get in the holiday spirit!  With death, disease, being a toddler mom, etc we all have a had a long year, so it was an incredible treat to escape and get away from "real" life and just sort of show up, eat, walk, and enjoy.  Thanks Mom! 

DOWN: Christmas and A Trip to the ER

Mom and I arrived back to Dayton luckily on the tailend of a major winter storm/deep freeze.  We spent Christmas Eve largely catching up on sleep and relaxing and a fairly quiet and subdued Christmas morning.  I was pretty tired, as to be expected post travel,  but was also having a bit of trouble with breathing and my oxygen saturations.  Even with a revised target of trying to stay in the low 90s, I was on my portable oxygen concentrator and in the 80s.  Christmas was Sunday, observed on Monday, and my oxygen concentrator for home was getting delivered on Tuesday. I then had a doctor's appointment scheduled for Wednesday, along with a scan and treatment.  While on the cruise I had sent a message that I hadn't been feeling 100% and asked to move up my next CT scan to that week...put it on the covered year's insurance and get an idea of whether the treatment my doc was so excited about (Enhertu) was working.  As I'm sitting around on Christmas, thinking about how I felt and what my numbers were and whether I could make it to that appointment, we made the decision that there was no sense in suffering and I should go in to the hospital.  I needed more oxygen and didn't have any way at home of getting it, so to the ER we went.

One of my network hospitals is super close to my house, and there was no-one in the ER so I was seen quickly.  They ruled out any acute cardiac issues like a heart attack or something like that.  The chest X-ray is the first quick and dirty look to see what might be going on in the lungs.  As I'm seeing results of the intake workup come into MyChart I see that the X-ray notes there may be progression of cancer from last, but the X-ray isn't really the best way to determine that.  The ER ordered a CT, primarily to rule out a pulmonary embolism....and, when the results came back, they were telling.

I didn't have a PE, but the CT showed fairly significant progression of the cancer in my lungs.  The spot on my liver had also grown.  Fuck.

Can't say I was that surprised, but it still sucks to see it in black and white.  And, I'll save a full treatise on communication in healthcare, but it was slightly awkward because while I saw that result, none of the providers mentioned it or discussed (I'm hoping it was because the B squad was covering the Christmas shift).  

What the CT did show was possible pneumonia in my lungs which warranted an admission so I could get some IV antibiotics. 

FLAT?: Hospital Stay

Getting admitted on Sunday, I was enjoying a high flow of oxygen and the opportunity to rest.  It wasn't a whole lot different than what Mom and I would have been doing at home....playing cards, watching tv, puzzling, napping, etc.  

Mom took care of accepting my oxygen delivery which made the prospect of going home much more amenable.  I was blessed with some great visitors and tons of well wishes, reminding my (and my mom) of the incredible support network I have here in Dayton.  The second hospitalist was less convinced what the CT showed was pneumonia (and all of the tests for the things that normally cause pneumonia came back negative).  Pulmonology consulted, which was pretty worthless (well you know if you lost weight that would make it easier for your lungs... [insert middle finger here]).  Physical and occupational therapy consults happened and we redid my walking test, like the one I had 'failed' at the pulmonologist before the trip.  Basically same results, but showing I needed a bit more oxygen with activity, although by the end of the stay I was able to get off of the O2 at rest.  

UP: Having Mom Here

Timing wise it was actually great this all happened while my mom was here.  She's a great nurse (literally she was a nurse) and I think we both appreciated her being here.  We got to toast the New Year (with our holiday Christmas frozen meal we ordered that we obviously didn't eat on Christmas), she helped me take down Christmas and catalog my ornaments, and got to spend time FaceTiming the rest of the fam often.

DOWN: Oncology Appointment

Having seen the CT results, I already knew the next visit to my oncologist wouldn't be sunshine and roses.  Mom and I went to the rescheduled appointment on Jan 3rd and the disappointment my doc had that the latest drug hadn't work was obvious.  The fact I was on oxygen didn't help matters either, as it represents a real change in status, even though I'm still fairly functional.  

The most striking thing that made this appointment different was that it's the first time we had the conversation of "when do you want to stop?".  We're nearing the end of options, expending all the arrows from the quiver, whatever analogy you want.  And, while I know this, it is different to hear it, to have the conversation.  To hear my doctor say that I've been doing so much the past 2+ years to fight this...that whenever I say 'when' is fine, and up to me....that hits different.  Especially when your mom is sitting next to you.

But, I still 'look' ok.  I'm still working.  And despite being on oxygen, I'm still alright, so yeah, let's keep trying?  

My doc said he'd consult with the doc at U of Indiana I've previously seen (who he mentions still remembers me!).  And in the end, it looks like we'll try another new targeted type chemo.  Trodelvy.  This drug goes after a certain protein that can be in cancers.  It's not yet FDA approved for my type (estrogen receptor positive HER 2 negative/low) but there were decent results from a Phase 3 trials in patients somewhat similar to me (that type and having had multiple prior lines of therapy).  

UP: CPAP Acquired and Return to Work

It's a minor up, but I finally was able to get the CPAP to treat sleep apnea that was prescribed at my initial pulmonology consult way back in the summertime.  Technology has certainly improved since my dad had one multiple decades ago.  I can't say I love have a mask strapped on while I sleep, but it seems to be going pretty well so far.  It also allows me to bleed in the oxygen.  I don't notice any changes really in how I feel, but it's good for my body to have some better rest.

Work activities ramped up the 5/6 and it was nice to feel a bit more normal having something to do.  My portable oxygen concentrator became my new friend, but it allowed me to be out and about.  I swallowed some pride and got a handicapped pass.  In hindsight it has been great, as any extra walking is pretty tough.  While I'm not teaching, there's still plenty on my plate, but so far I've been able to chunk it and have some hours of activity with enough rest around that I'm not completely wiped.

DOWN: Trodelvy Treatment Aftermath

So I went in on the 11th for my first Trodelvy treatment.  Treatment itself went fine, pretty usual.  And I wasn't feeling too bad that first day, but over the next couple of days, it built to feeling probably the worst I have in this whole thing, including going back to my initial diagnosis and "big" chemo treatments.  I was wrecked.  Mentally foggy, hard to maintain sats, not wanting to eat, etc.  And it really felt like maybe this was 'the end', or maybe it was coming sooner than I thought.  

Come to find out this week, when I went in for my second infusion (it's 2 weeks on, one week off) that there was some reason for feeling like death, as my blood cell counts tanked hardcore.  Basically no white cells.  Red cells down (combo of less of those cells and not as well saturated with oxygen really helps explain the fatigue). 

 We held treatment and instead I got a shot to boost cell counts on Wednesday and Thursday.  I went in for a blood draw yesterday and the drugs did their job and I'm back to normal-low range. All was made slightly better by getting to spend some time with the college roomies...thanks for the mid-week visit girls!

UP AND DOWN AND FLAT AND DOWN AND UP AND DOWN: My Brain and Thoughts

This is already too long to get into it all, but let's just say there's been a lot of thinking going on the past week or so.  Mental preparations, considerations, thoughts.  Perhaps I'll try to make sense of them to share at some point, but not now.  

I am entering a new phase. The end is closer, (duhhhhh forward movement of time Anne, clearly it is!  But I think you can surmise what I mean).  That realization comes with a lot...changes in conversations with others, changes in myself, both mentally and physically.  I'm so thankful for friends and family that I can have open conversation with, as challenging as it may be.  

I've pulled back a bit more at work, saying no to a few things I had planned to say yes to, beginning to informally plan for wrapping things up in May and then taking leave in August (I'm not on contract May-August).  Whereas I would normally plan trips, travel isn't as easy (though not impossible), so I haven't put anything on the books so far.  I've been hosting all sort of visitors, from local friends, to college roommates, to my sister coming soon.  They are incredibly generous, helping out to keep me fed, the house clean, etc.  And I'm taking rain checks from local folks that are also offering whatever I might need.

Feeling that crap after a treatment isn't unusual...I mean, it's the more common experience.  But, like I told me mom, I'm used to whitewater rafting after treatments not feeling terrible :). So I have some adjustments to make in expectations...of how I feel, what normal oxygen is, what a 'full' workday looks like, etc.  It's all incredibly dynamic, changing quickly, day to day.  The planner in me hates it.  I really do.  I want the countdown timer.  The clear idea of how long, and how functional and how I'll know.  

When I was first diagnosed in March 2020, after looking at all the literature, I told myself 3 years...I'd likely have 3 good and functional years and after that it was a toss-up.  Well, this March would be 3 years and god damnit as much as I love being right, this is a case I wish I wasn't.  

MOVING FORWARD: UP? DOWN?

And we're caught up to today, me sitting in my favorite corner of my couch (which is still arranged basically as big bed and has been since October and I love it).  My dear friend and travel buddy Erica is in the guest bedroom in a workshop but spending the rest of the weekend hanging and helping process a lot of this.  Karyn comes this weekend, another treatment on Wednesday, that we'll see how much it sucks.  I'm trying to settle in to work, prioritizing work from home a couple days a week when I can.  I'm starting to seriously Marie Condo work life a bit more, really holding on to the things I enjoy and coming to terms with maybe just letting some of the 'to-do's not get done.  My therapist asked a really thought-provoking question last session, 'what do you have left to do/accomplish?' which I continue to ponder (and maybe you all should too!  Why not?!  Momento mori like the stoics and my tattoo says!)

THE QUICK AND DIRTY SUMMARY:

Christmas Cruise= Good.  After, couldn't maintain decent O2 sats, went to ER, hospital stay, ended up ok, but found out last chemo drug failed, more progression in lungs/liver.  New drug had major side effects.  Slowly getting back to work. Lots of support and visitors making it all more tolerable.

Happy Holidays! And disability becoming visible.

 Happy Holidays!  I’m currently in the Dayton airport awaiting a flight to my next adventure…a river cruise on the Danube to see Christmas Markets with my mom and sisters.  It was sort of an impromptu decision and treat (thanks mom!) that came together sort of last minute.  To my delight it’s one of those vacations that’s perfect for between semesters, as we just show up and someone tells us where to go.  Sounds great.

The semester ended!  I had a weird moment after teaching my potential ‘last class’, but I won’t be too far from the classroom.  I get to spend the time on some administrative/institutional things as well as in my department and continue research and other service stuff, so will probably stay busy enough.  In fact, the Provost laughed at me when I said that I was thinking I might have a lot of time on my hands in the Spring.  

No major updates on the disease front…I’ve been on the new drug, Enhertu since last posting, 4 treatments total.  All have gone well, no real side effects that I can identify.  Lots of optimism around the drug, as I mentioned before.  I’m not feeling overly optimistic as quite honestly I’m not feeling that great, but we shall see.  We’ll scan after the next treatment at the end of this month to see whether it’s working.  So why am I not feeling great?  Well, I’ll skip a full fledged physiology lesson here, but basically, I shouldn’t be feeling great.  My aerobic capacity, while I haven’t actually measured it and am just going off my Apple Watch prediction is low.  Like really low.  20 ml/kg/min for those in the know.  Basically like 80 year old levels.  Cool.  What this really means, and like I used to explain to my grandma, is that normal stuff like sitting around (3.5), walking (6-8), rather than being almost non-noticeable becomes a much larger relative percent of my maximum.  AKA hard.  Along with/driving the reduced aerobic capacity, the shitty lungs make it hard to oxygenate my blood.  Most people became a lot more familiar with oxygen saturations during COVID.  You know they would say if you dropped below 90 to go to the hospital or whatever…. Well, at rest, I’m about 94%, not too terrible compared to a “normal” person at 98-100.  And then if I do much of anything, it drops.  Like when I was at the pulmonologist’s office yesterday and I started to do a 6 min walk test (what it sounds like, you just walk, at your normal pace, for 6 min), and by 2 min it was below 88.  Meeeeeeaning, I get to have a fun new accessory!  Oxygen!  

It’s really just for ‘exertion’, which is a little nebulous as we discussed….not like get up and go to the bathroom at work, but yes for going to the grocery store, or like when I walked from the parking lot to the airport?  Guess I should have had it for those couple of 5Ks I’ve done in the past few months.  I had purchased a portable oxygen concentrator for the Africa trip not through insurance/sort of roundabout.  It sort of works (doesn’t deliver quite the 2 l/min they want me on) and I have now and will use.  When I’m back I’ll probably get a really sweet grandma pack of little O2 bottles.  Maybe I can make nasal cannulas the fashion trend of 2023?!

After ‘failing’ my walk test. And why I made the appointment in the first place…

So hence the title.  Cancer is technically a disability, though I don’t often think of it that way.  And even with the short hair and port scars, it’s still kind of easy to pretend like it doesn’t exist, or at least fell like I”m not wearing a blinking sign that says “I’m sick!”.  Well, having a humming and hissing machine on your back and rubber tube up your nose is a little different.  So yeah…processing that I guess.  The long break will be nice to start adjusting.  

Otherwise the pulmonologist visit wasn’t super interesting…we are potentially trying an old school approach to help the cough (basically just numb the lungs with a lidocaine nebulizer) that I’ll try when I’m back.  But otherwise, you know, it’s due to the cancer…she says in a snarky-ass voice to mimic the doctor.  No shit, Sherlock, thanks for that insight.  

No other major health news…oh, I thought I broke another rib, they prescribed oxy for pain and it’s actually a good cough suppressant, so when I don’t care about thinking straight or being very awake, I am able to take that to stop hacking a little bit.  [insert meaningful information about the opioid crisis and its tragedies and the fallout and impact here….]

Despite kind of feeling like shit, meaning that when I get home I just lay on my couch for the most part, life has been pretty good.  Grad school friends visited, high school friends too (can’t remember when I last updated).  It’s fun to see people and I’m really grateful they all didn’t expect much out of me as a host!  

I was able to join the rest of the family in Boise for Thanksgiving.  It was a great time all being together!  I nap more than probably anyone (including the small kiddos) but otherwise don’t think things slowed me down too much.  They’ve got a very excited puppy that was fun to wrangle, we ate well, did some holiday things, and mostly just enjoyed each other!  Have I mentioned here how much I love the group of people?!  I do.  They are the best.  

Flight’s about to board so I’ll wrap up… here are the highlights:

• Things may suck a little right now, but I’m here for them to suck.  So bring it on.
• Holidays are great and I’m trying to just focus on that and time with fam and not dwell in any of the potentials of lasts.  
• I’m stoked for a long break and a new challenge/role in the spring for work.  Even if it might take some sorting to figure out exactly how I’m spending my time.
• Super grateful for the friends, family, colleagues, neighbors, etc that help make this kind of crazy life happen.  Checking on Riley, picking up the slack at work, encouraging rest, listening when I need to ‘notice and name’, understanding when I bail, texting to keep me sane.  Ya’ll are great.  
• Happy Holidays…Christmas, Hanukkah, New Year’s, corporate margins, giving season, whatever you celebrate!  Let it be with those you love and bring peace and joy to your heart!  (Aka this is also my Christmas card, so yeah, saved some trees, money and time there).  

New School Year, New Drug(s), Same Stupid Disease

Last time I posted at the end of August, I had passed responsibilities off to my brother to hilariously recount our siblings trip to West Virginia.  Well, it’s back to me for an update of the past couple of months.

Sidenote...posting is interesting.  The continued march of metastatic disease, with far fewer checkpoints, 'finishings', etc is mentally challenging.  Information and changes come in chunks, a bit at a time, rather than big revelations.  And, sometimes change day to day, week to week.  So to try to summarize nicely is tough.  And, as I'll expound on more later, energy hasn't been high, and so at times, it's far easier to just avoid posting for the sake of mindless tv, a bit of extra rest, or whatever.  This is all to just say at the start that my lack of posting doesn't indicate a lack of appreciation for all of those who I know are in my corner.  I thank you all.  A lot.  The mundanity (oh good, that is a word, I just checked) of my life, my life as a stage iv metastatic breast cancer patient doesn't always seem worth sharing.  But I do, as I know folks care, and it does still bring some catharsis...or if not, at least a nice summary and review for my own sake.

So, what’s been going on?

Classes resumed and I got back to work even more full-time than during the summer.  I’m only teaching one class given the research grant buyout money relieving me from my normal other 2 classes.  I like my job.  I really do.  There’s generally multiple times a week where something happens that makes me really feel like I’m making an impact (generally positive!).  It’s not without its frustrations, as any job (or really any experience, right?) has, but typically, the frustrations are outweighed by what I enjoy about it.  So the return of classes, more meetings, etc. has actually been welcomed.  (full transparency, I drafted this paragraph a few weeks back...it's still true).  

I'll hit the highlights/important stuff chronologically then go into a bit more of the "how are you feeling" topic.

Where I was at...after getting back from Africa in July, I started Ixempra infusions, another chemotherapy treatment.  I handled the drug pretty well (remember I had treatment right before siblings raft trip), in part due to the extra steroids. 

Port Placement - Soon after classes started and after my first dose of Ixempra required multiple tries to get an IV in my arm, I made the decision to have a port placed.  Whether Ixempra worked or didn't, I'd be on infusions (of it, or an alternate drug), so it only made sense to be able to have easier access.  So September began and I was at the hospital for the outpatient procedure.  It went well (god I love twilight sedation...I've said it before and I'll say it again, it's probably a good thing I've avoided doing drugs most of my life).  Thanks to the support system I have here in town for getting my there and back.  

Birthday - It was low key, but enjoyable, and at this point, I'm just glad for each additional trip around the sun.  Also we had a meatloaf party which is so Midwest, and was pretty amazing.

KWF Fun Run - I was able to join my friend Amy and complete the 5K sponsored by Karen Wellington Foundation, the group that sponsored our siblings trip.  It was a beautiful day and nice to complete the walk.

Mid-September - A friend was in town and treatment #3 on September 14 hit me a little harder on the backend, with a bit more fatigue.  Or, I just don't have the stamina to be able to pull days of 7am-8pm activity multiple times per week.  

DVT - After the 9/14 treatment, I was having some swelling and pain in my right arm (the 'good' arm, not the one lymph nodes had been removed from).  I tried to tough it out for a couple days, monitored to see if it got any better, which it didn't.  So the following Monday (9/19) I went to work and called the doc.  They wanted me to get an ultrasound right away, so I headed to the hospital.  I wish I could have had my head turned the other way during the exam, but it didn't take long for the results to come through MyChart and show that I had a deep vein thrombosis in my right subclavian and internal jugular veins.  

DVTs are essentially blood clots adhered to the side of the walls of vessels.  It makes blood hard to get through, in this case, causing some backing up and swelling/dilation of my veins (you could basically see them all in my arm).  The risk of these is less about the clot/flow itself in most cases, and more about if the clot is to dislodge and travel to the lungs where it can cause a pulmonary embolism.  Anyone who is a dork like me and thoroughly read the inserts in the back of planes about why you should move your feet on long haul flights is familiar with this.  Fortunately, for upper extremities, unlike the legs, this risk is more minimal.

So, after calling my doc with the results, they sent me to his office, where he promptly wrote me a script and had me start taking blood thinners.  The blood thinners don't actually fix the DVT but make it easier for blood to get around it.  It helped with symptoms (pain, swelling), and while there is still some visible dilation, seems to be working well enough.   I'm not sure if it's a permanent thing that I'll be on or not, but for now, another pill to add to the morning routine.  Kudos to the efficiency of my team, as I went from phone call to ultrasound and treatment in just under 4 hours.  The DVT was likely caused by an issue with the new port, though it's not overly important why it happened.  It was a "good" reminder that I'm not invincible and this shit is serious.  And the week was just starting...

CT Scan - As per usual, after 3 months/4 cycles of drugs, we would do a CT scan to see where things were at and whether the Ixempra was working.  So on Wednesday, September 21st, I did my routine thing, laid on the table, breathed in, held, relaxed, experience the 'down there' rush of CT contrast, and then began to monitor my phone for the impending MyChart notification of results.  I didn't have to wait too long as they came back that afternoon. 

 

Fuck.

Fuckity fuck.

Progression in the lungs (not really surprised).  New spots in the liver?  God. Damnit.  Oh, and that rib pain I had that one set of xrays didn't show anything?  Well apparently they weren't the best view because I have healing fractures of the right 5th and 6th rib (thanks cough).

Well, shit.  Another missed arrow from the quiver.

Camping and Thinking - The following weekend, I went up near Cuyahoga Valley National Park with my colleague Diana and her family for some camping and hiking.  My dear friend Erica drove down to join us from Michigan.  It's a really nice park with some beautiful areas, and the time in nature was much appreciated.  And it totally wore me out.  Just short 2 mile slow hikes, sleeping in a tent and I was wiped.  This isn't the person I thought I would be, nor do I want to be, but apparently is who I am.  And the combination of the fresh air, the hikes, the conversations, and some sleepless nights listening to the rain really got me thinking.  Or thinking more rather.  Specifically about work, how I feel, what it should look like in the future, etc.

. 

I had previously looked at our benefits regarding medical leave (they are pretty generous) and had a few conversations with folks about what the future might hold.  This trip sort of solidified to me that my stamina is just not where it needs to be for me to give my fullest effort in the way I want.  And, the continued coughing, loss of voice (totally lost it at a work meeting in DC in late August and its never fully recovered, still a little scratchy 900 number sounding) make teaching challenging.  The unpredictability of how I will feel on any given day is hard.  Having students that rely on me at a specific time/place is tough.  Now, let me say and make VERY clear that I realize this is a SUPER privileged position and thing to say.  Pretty much all jobs require you to be somewhere, doing something, at specific times.  I am really really lucky to have a flexible job with a lot of autonomy.  I get that.  We all make choices, and that flexibility and autonomy is a big reason why I chose to work where I do.  

The combination of the recent scan news (I hadn't met with my doctor yet, but it's clear it's in the wrong direction), the DVT, the increased fatigue, frustrations with some aspects of work, it all kind of came to a head.  When I got home from the camping trip, while I still had the clear thought that nature provides in my head, I started to make some moves....sending some emails and scheduling some meetings.  Essentially, updating and letting the people who needed to know that I needed to seek some change.  I needed to be able to explore what my options were for reduced/altered work, for stepping back from some things research and teaching related while still continuing to work and contribute.  I am so, so, so grateful for the support of the people I work with, especially our senior administration, who I've worked closely with on administrative/institutional efforts this year.  All agree that my health and wellbeing are a priority and are willing to work to make sure that I'm able to take care of myself.  Whether that means taking the extra time to seek alternative treatments like acupuncture, traveling to feed my soul, or simply not engaging in work that is less fulfilling.  I realize that it's my hard work and contributions that have helped earn me these privileges and support, but I am still so incredibly grateful.  

So the wheels are in motion.  I have some paperwork to do things like get accommodations for things like an all lot parking pass if driving vs walking to meetings helps.  I know what my benefit options are, important dates, timeframes, etc.  I won't teach in the spring, as I'm not sure I'm capable and who knows how those 6 months play out.  The discussion of what work looks like next semester, when I won't be teaching are in progress.  It is hard to step away from the classroom, but I'm not satisfied giving less than my best.  I also know there are other ways in which I can use my talents and what energy I have to contribute.  I'll continue to do the things that give rather than drain my energy.

September wasn't over, nor were the 'big events'

Tucci's Passing - Folks who know me, know that my grandma, 'Tucci as we call her, was stubborn (or 'determined' may be the more polite word) in good ways and bad.  She worked into her 80s, lived alone into her 90s, loved her Chicago, and always had food ready.  Since last Thanksgiving-ish, she had been with my mom in Arizona, as her health and cognition made living alone not safe/ideal.  My mom is a saint for the work she did caregiving for her.  After Tucci turned 96 in late August, she started to decline, as 96 bodies often do.  In the end, my mom gave her the opportunity to pass peacefully in bed, at the house on Monday, September 26th.  Thus began a logistical dance of transporting the body to Chicago, planning services, arranging for family travel from across the country and globe (my cousin is in Milan, Italy).  It was actually really nice to see everyone (most...not all kids and spouses made it because of various obligations, reasons, etc though all were there in spirit), the cousins getting together for the first time in a decade, since the last family funeral.  Family friends came who we hadn't seen in years, and the strength of those friendships never ceases to amaze me.  

Doc Visit and Plan - Prior to leaving for Chicago, I saw my doctor to discuss the CT results and next steps.  While he was obviously disappointed in the CT results he was actually encouraged by the plan.  If you remember I've always described my cancer as ER/PR positive and HER2 negative (in fact this was how I described it in class when I gave my endocrine/cancer lecture that yes, actually just happened to be timed for this same week!  Love that timing!).  The HER2neu protein can be measured in a couple different ways, one that yields a positive/negative result and one that gives a 0, 1, 2, 3 (3 being positive, others equivocal or negative) results.  Typically patients were only treated with drugs targeting HER2 if they were positive/3. Up until a recent clinical trial where they treated patients with prior chemo treatment who were ER/PR+ and "HER2 low", those with 1 or 2 levels and found good success (extended progression free survival by 5 months and overall survival by 6 months, being effective in about 60% of patients which for the cancer world is pretty great...like standing ovation when they announced the results at a cancer conference great).  The drug, Enhertu, is also tied to an antibody (something that can match up to the cancer cells), so fairly well targeted to reach the cancer cells.  It's an infusion, albeit much shorter (90 min first time, 30 min after), with fairly well-tolerated side effects.  So that's the plan.  Doc is encouraged, excited.  I'm not holding out hope, though the whole "stay alive till they find something new" might be true with this one, as it was just recently FDA approved in August.  

First Dose- So after arriving back from the funeral services, on 10/5 I had my first Enhertu infusion.  It went fine, with no adverse effects.  Afterwards I was dealing with quite the "pharmacological storm" as one friend called it, as I also got my flu shot, then had a UTI and was on antibiotics, so wasn't 100%. 

MN Girls Visit- Some dear friends from Minnesota made an impromptu quick visit thanks to birthdays and cheap flights.  It was fairly uneventful (other than wearing these badass shirts that we found on etsy), mostly just hanging and chatting.  Which, was, perfect.  I wasn't up for much more, and it was great to just 'be' with these ladies.  

Boston- After a week of work, I was off to a planned visit to Boston to see my niece, a freshman at Tufts.  We attended a concert, did some touristy things, ate way too much good food.  I was pretty annoyed/disappointed/pissed off about my fitness/fatigue levels preventing me from my normal 'walk everywhere!' mindset.  But I guess grateful for Lyfts and a patient niece.  It was great seeing her in her new element, and I always enjoy a visit to big cities.

And that catches us up to today.  Our students are on break and I decided to take the day to rest, recover, and just be, before getting back at it.  We had some semi-major announcements via a town hall at work this afternoon that set a vision for the institution that I'm proud and grateful to have been a part of working on for the past few months and look forward to hopefully being able to contribute to working on more in the future.

My cough is still here and still sucks.  A lot.  I get tired easily and it's difficult to prioritize activity, as it gets hard, even though I know it would probably help me.  I'm trying to process what 'stepping back' really looks like and how to actually do it moving forward.  For now it's mostly not berating myself if I come home at a reasonable hour and rest in the evenings and don't do work on the weekends.  There are holiday plans to figure out, and I go day to day feeling good and hopeful vs wondering if the next coughing fit could be the last.  

Coming up, I have some more friends making a visit (this time grad school friends from Colorado) and then looking forward to Thanksgiving with family in a location to be determined.  Fall is beautiful in the midwest, with the reds popping with the yellow and green leaves.  I kind of forgot about it since I was in California for 2 weeks at this time last year.  

We wont scan again until probably December, so till then, it's wait and see...

(oh, and PS, October and the pinkwashing and all that is fucking annoying.  See my friend Amy's blog post on why for us metastatic folks , including the places to give if you actually want to support research, or MBC patients rather than just having pink shit.)

Sibling Trip from the Sibling Perspective

 [Editor's/Anne's Note: Please enjoy another guest blog from my brother Marc...an amazing dad, outdoorsman, lawyer, etc.]

Disclaimer:  Couple things off the bat.  I don’t know how to write a “blogpost”.  I’ve only read like half a blog ever (this one) so this will likely be “wrong”.  Like in the “that’s incorrect” sense.  Also I was told to be myself and whatnot which may come across as sarcastic bordering on mean-spirited, blunt, and full of foul language.  So in that sense it will also be “wrong”.  Like the “what is wrong with you?” sense.  So if you are starting to read this and want the correct, clean version here it is:  We went to West Virginia, it was a lot of fun, Anne is amazing, the end.  If you want the real deal, you’ve been forewarned.

 So I was asked (guilted? tasked?) to do a guest blog on here, and by here I mean this Word document I am writing this in because the only instructions I got was to do it.  Like writing a guest blogpost is akin to grabbing some milk while you’re at the store (and even that would require a little more guidance, like if you want it from an udder or a nut, and what percent, and holy shit even buying milk is a chore now).  So I am probably already screwing this up, but hey, you get what you pay for I guess. But from the limited guidance I was given, I’m pretty sure I am supposed to tell anyone who is interested about the trip Anne took with her favorite sister, her other sister, and her only brother, me. 

The trip was sponsored by a company called KW something or other and they are really amazing, allowing people like Anne to do amazing things with their families.  Not sure they totally understand how booking airfare works, but a small(ish) price to pay for the opportunity it afforded us siblings to hang out together for the first time in our lives without parents, spouses, kids, etc.  So of course, we went where any group of siblings would go if they had a chance to take a trip together for the first time:

 No seriously, that’s where we went.  There’s a good reason for it and it was great, but do you know how many times when I was talking to people about not being at work for a few days and they would be like ”where you going” and I would say “West Virgina”  and they would look confused and then say “sorry?”? All of them. 100% of the times. But whatever, fuck those people (for lots of reasons, but at present for shitting on our trip). The plan was to do some epic whitewater rafting on the New River, and spend the rest of the time hiking, or paddling, or hanging out, or doing whatever we felt like.  Basically, we were all going to pretend to be Karyn for a few days, except Karyn who would just be herself but in 90% humidity.  So we had the plans and as much as it probably annoyed the shit out Anne not to be able to, someone else made all the necessary arrangements for us to have our first ever Sibling Hang.  First stop, Cincinnati, Kentucky!

 Fun fact, did you know that the Cincinnati airport is in Kentucky?  Me neither.  Not even while I was in it, despite the plethora of random bourbon kiosks littering the airport which could have been a clue.  ‘Nother fun fact, did you know that neither Cincinnati or Kentucky are in West Virginia?  I did know this one (Kentucky is like a totally different state I’m pretty sure), but we were assured by our fearless leader Anne, that our destination, Fayetteville, WV was a relatively short drive from the Cincinnati airport, which, we all just learned, is in Kentucky.  So once we all met up, we were on our way.

And we are just now getting out of the fucking parking garage.  First we got knocked over by the actual air walking out of the airport.  It’d been a while since any of the rest of us had dealt with humidity so it took a minute to pick ourselves up and get ready to go to the car. Then what Anne referred to many times on the trip as “Chemobrain”, kicked in full force and she couldn’t find her car. This would be the first of what would be very few times that any of us could actually contemplate that Anne had just recently had a chemo treatment.  And by recently, I mean like 2 fucking hours before.  Like she came from the treatment to pick us up at the airport (in Kentucky) so we could drive to West Virginia. She didn’t do what a normal person would do, go home and sleep for the rest of the week.  She purposely drove to an airport so she could then go on a road trip with her obnoxious siblings.  There are really few words to describe that, but the ones that come to my mind are, brave, awe-inspiring, and stupid. Once we finally did find the car, we ringed the sweat out of our clothes and hopped in the car to … drive around in endless circles.  This fucking parking garage, man.  We shoulda known.  First off the entire airport is lost.  It thinks it’s in Ohio but it’s actually in Kentucky, so I don’t know what anyone can really expect.  But just like the secret u-turn you have to take walking throught the airport to get to the garage in the first place, there’s all these ill-placed signs and the thing was like 28 stories high.  It was a 47 right-turns nightmare.  And we ended up driving around for 45 minutes before actually leaving the airport.  Only four more hours to go!

At this point, if you are still reading this you are probably like, whaaaaat the fuck dude, this is supposed to be about the trip you took, like the shit you did, not driving around a parking garage.  But two things: one, when it’s your turn to write one of these, do it however the hell you want, and two, the car ride really set the tone for the rest of the trip.  I will not now, then, or ever, say I am glad we planned a 5 hour road trip after 10+ hours of flying into our trip, but it did give us good idea of what we had gotten ourselves into.  For one it was our first introduction to Anne’s cancer cough.  It happened, we all stopped and were like “are you ok””do you need some water””can we do anything” and Anne told us she was fine don’t worry about it, it happens, ignore it.  And then it happened again and we tried to ignore it.  And then it happened again, and we felt like dicks for ignoring it.  So we said “Yo I kinda feel like a dick just stopping mid-sentence when you start coughing, waiting for you to stop, and then picking up like nothing just happened” to which Anne replied (I’m sort of paraphrasing here) “Tough shit, it’s my cough, I’m fine, ignore it and move on”.  So that set the tone for what I can only describe as one of the most awful sounding coughs ever and realization #2 that Anne was dealing with some capital s Shit and is incredibly adept at making the best of it.  So for the next few hours we marveled at the trees and the gas prices and talked an laughed and jumped some lady’s battery at Bob Evans and ate and talked and laughed some more.  

Then I yelled “fuck you” at a racoon that ran across the road, which I thought was reasonable but others thought was strange, we drove down a dark windy road into a West Virginian “holler” where it got so humid that the windshield fogged up (get new wipers Anne) and we were basically driving blind, we missed the road to the house because it looked like a fast food drive-thru lane, and then finally made it. 

The house was cool.  No one really took any pictures or anything because at this point it was dark, we’d all been traveling for like 20 hours, and had eaten a ton of chicken fried steak at Bob Evans and the worst hamburger ever at the airport, so we went to bed.  But here’s the two pics of the place I found, one of the steps going up to it and another looking off the porch during a rain storm.  There totally was an inside though, and it was nice.  Just not photo-worthy I suppose.  I mean who takes pictures of couches and shit?

     

The next morning we woke up, got some coffee, and Anne said the word “listicle” for the third time in less than 24 hours so we banned that word and were introduced to a new one, “oldmanjoe” which apparently is not a elderly guy named joseph, but the word for putting two words together like list and testicle to get listicle. 

 

Anyway, oldmanjoe was definitely not banned for the rest of the trip and we headed over to the New River Gorge National Park for a short hike along a ridge that looked down to the New River where we would be rafting the next day.  It was beautiful.

     

           

And fun

          

     

 

And we saw some cool stuff

  

 

If you had your sound on for that last video, that’s not what a centipede or whatever that is sounds like.  That’s what the forest sounds like when Anne is hiking in it.  Like for real, she wasn’t really all that close when I took that video.  But she just kept hiking.  And coughing.  But hiking.  Which makes sense because at this point it had now been like nearly 24 hours since her treatment.  So no big deal.  No wait, it is a big fucking deal, as Karyn, who had been through treatments for her cancer would attest to for like 100 times over the next 5 days.  And I don’t say that as a knock on Karyn at all, but as a testament to how easy it was to forget what Anne was going through.  Like it was necessary for someone to be like “Uh, you shouldn’t be able to be doing all this” all the time to put in perspective for dopes like me what we were all witnessing.  It was truly amazing.  Like the actively-receiving-chemo-patient was the third most exhausted person after the hike, which shouldn’t be the case.  All centipede scaring aside, it was nothing short of incredible. 

 

We ate really well the whole trip.  Too well according to my pants when I got back.  I don’t have a picture of everything and in what order we ate it, but you ain’t going hungry in Fayetteville WV.  And while I will leave the carrot hotdogs in West Virginia, I am on a mission to get a Biscuit World to open up in Idaho.  Look at this beautiful son of a bitch:

 

Cards and pizza that night and then waking up to head to the river to raft the next day.  And it was awesome.  Super cool place Anne had been to before and amazing whitewater.  And not just the rapids, like the water itself was amazing.  It was 75 degrees.  The water.  Not the air, the water.  It was like rafting in a bathtub.  Usually the most dangerous part of falling out a raft is the initial shock your body has when it hits the cold water, which causes you to not think straight and swim where you aren’t supposed to and get yourself into trouble.  But not here. No one on our trip fell out, but one of us was pushed out, and you almost wanted to get back in the boat not because of the undercut rocks the guide warned you about, but because it was cooler in the boat than in the water.  But don’t get me wrong, the rapids were amazing too: 

It was a total blast.  And Anne was amazing.  She once again impressed, even if she did look like she was shitting her pants most of the time.

 

And props to Karyn as well.  Even though she is still recovering from surgery, she was gritting her teeth and getting it done.  Literally:

 

And to Sarah as well for having so much fun and being big enough to admit she pushed me into the water.

 

And last but not least our guide (Scott maybe(?), I know his nickname was an oldmanjoe but I can’t remember it) for waiting until hour 3 of being with people he just met to drop the phrase “big ‘ol fucking titties” while telling a story about a bong he made.  Your restraint, and knowledge of the river, was greatly appreciated, even if your bird jokes weren’t.

 

Afterwards it was showers in water colder than the river and shopping for souvenirs of which I bought way too many before heading up to a bar where you get to toss back drinks and watch a video on the tv’s of the trip you just took.  

 

Then downstairs for dinner and pepperoni rolls and then back to the house where shit got real.  Not the capital s Shit that Anne is dealing with, just the shit that comes out when you have a chance to talk with your siblings with no other distractions going on.  I’d like to think that a day spent on the river, had something to do with it, the words and emotions flowing like so much water released from the dams of our everyday lives, but more likely it was the dark and stormy’s at the bar.  And all we really ended up talking about was that Anne is a total Badass and that Sherri’s Berries are fucking disgusting. 

 

The next day was paddling around some lake in the morning, which was nice and relaxing.

   

Until we got caught out in a storm. Then after breaking Anne’s sideview mirror off her car, and grabbing West Virginia bratwursts with some goats…

 

…Anne finally took a nap.  Literally the first time she let herself rest since her treatment.  The rest of us bought more souvenirs and pounded some loaded deviled eggs because when you walk past a food truck selling loaded deviled eggs and its 95 degrees out what else are you gonna do.  

 

Then a dinner odyssey that started with a closed taco truck, then turned into an absolute deluge of rain that produced a double rainbow, 

 

and ended with pepperoni rolls from a gas station (just for me), before more cards and talk and laughter back at the house.  Oh and lightning bugs! 

 The next morning it was time to pack up and head to breakfast in an old converted church, where we bought more souvenirs, and then headed to a pretty cool waterfall.

After that it was off to the Cincinnati, Kentucky to catch our flig…well shit, they just got delayed, and wait that gets to Chicago after our next flights take off and what the hell, fuck it, lets get to the airport and figure it out.  This ride was much less eventful than the one heading out due to Anne sleep mumbling through most of it after finally giving herself a chance to rest, and the fact that we had all just spent like 4 days talking with each other and had run out of shit to say. 

Anne left us at the airport and drove home so she could take a nice long, well-earned rest until…*checks notes*…the next morning when she was heading out of town to a conference.  The rest of us rebooked our flights, got a room at a hotel that only an airport shuttle could get to and from so we had to shuttle back to the airport to get an Uber to Raising Cane’s (yeah we took an Uber to a fast food place) and then jaywalked across a state highway to watch a movie before ubering back to the airport with a guy who was about 2 more rides away from taking his passengers into the middle of the woods and murdering them, so we could take a shuttle back to the hotel to sleep for a couple hours and then shuttle back to the airport to fly home.  But Anne was coughing on her cat while all that was going on, so a story for a different blog. 

And mostly what we did after she dropped us off was talk about how amazing Anne is.  She always has been so it’s not really new, but just amplified with the Shit she is dealing with.  And we siblings should take some credit for her being so.  Not necessarily for anything we did or said (honestly probably in spite of most things we did and said) but just because we existed, were the older sibs who Anne always thought she had to be as good as, even after she surpassed all of us a while ago(some of us when she was like 6 and presenting book reports on dogs to the rest of us during dinner in the middle of summer for fun).  Watching her deal with treatments and chemobrain and that cancer cough and just the generally shitty hand that life dealt her with her diagnosis with such an amazing attitude and such courage is inspiring.  Like actually inspires you to do the hard things you don’t think you can do.  I mean I didn’t think I could eat this entire bag of Dot’s chicharrones while I was writing this, but I did.  So thanks Anne.  But seriously, you are inspiring and amazing and you need to remind yourself of that more often.  Or, use the tools in your brown paper bag. Winkeyface emoji.

So I think that’s it.  It really was an amazing opportunity and a great time and I am thankful we were able to do it.  I think we each got to learn a little something about our siblings on the trip which was cool too.  For me, it was that all my sisters, no matter their challenges, or apparent lack thereof, are all strong, smart, fun women, who just also happen to be incredibly terrible tippers.  

[Editor's Note: Thanks Bro.  Portmanteau is an awesome word.   You're just a really generous tipper.  And it's the Karen Wellington Foundation that helped make this happen, nominations by Alexis and Amy, generosity from Mom/Babs, and families letting ya'll take a few days...thanks all!]