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).