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!]