A whirlwind of the past couple days, for sure! Amidst the hair falling out, managed to get through the week. Friday was a long but enjoyable day complete with online trivia with high school friends and a virtual escape room for Karyn’s birthday. Both were great and definitely something to consider if you’re looking for safe and physically distanced socialization. I lounged on rainy day y, mostly procrastinating getting ready for the big trip.
TL;DR Summary...Flying wasn’t too terrible! I shaved my head! I get to stay in California!
Luckily my flight out of Dayton wasn’t till the afternoon on Sunday so I was able to pack all morning, despite Riley DEFINITELY figuring out what was up and giving me a pretty cold shoulder. She’ll be well taken care of, don’t worry, but I anticipate we may have some relationship mending to do when I get back.
Not a happy kitty.
Maybe next time I’ll take you with Ri.
I definitely felt like I was overpacking but when checked bags are free (Thanks Delta card) and you’re preparing for an unknown duration, multiple locations/climates and various adventures, it adds up! My lovely friends dropped me at DAY, which was not crowded at all, but a little slow just given that it was essentially a one-man show for checkin and security was single lane. However, the new fancy “your flight info is on your ID so you don’t need to show your boarding pass” was kind of fun.
My lovely FD friends sent me a
fancy n95 respirator mask which seemed appropriate to wear while traveling. That along with my standard sleeve for lymphadema protection and a beanie so I didn’t shed all over the place completed my fashion statement known as “flying with cancer”.
Extra mask over top just so I didn’t look as ‘over the top’
Perks of flying out of a small airport is that even with my lowly silver status I get frequent upgrades...Seat 1A baby!
Yes I will enjoy that extra leg room and being able to run off the plane first!
Arriving into ATL I was somewhat surprised that it felt like a “regular” travel day...much busier than back in June when I snuck off to Phoenix and flew through DTW and the boards were basically empty of departing flights. I was also quite pleasantly surprised that nearly everyone was not just wearing a mask, but actually wearing it correctly. Good job travelers! There was a definite awareness of spacing and people avoiding crowding. I think I probably only saw 1 or 2 assholes that defiantly weren’t wearing a mask or were wearing it improperly.
I grabbed some food and avoided the crowded food court, instead situating myself in a fairly empty gate area with plenty of space for the mask-less time of eating. That’s an interesting part about masking on the plane...they still give little snack bags and you can obviously take mask off while actively eating and drinking. I tried to avoid that best I could be eating before hand.
The boarding process of single rows from the back of the plane forward helps to keep spacing and avoid walking past others, also part of Delta’s efforts. I settled into my window seat, raised the arm rest (my “first class hips” appreciate the ability to spread out a bit more) and settled in for the over 5 hour flight from ATL-SFO.
I was attempting to do work and even paid for the WiFi to try to knock out a good amount of saved up stuff, but kept finding it hard to focus, difficult to look over my mask, etc. At one point when we were at cruising altitude, I decided to pull out my pulse oximeter I brought with (I spot check at home occasionally and if you unfortunately were to get COVID, having one of these is super helpful in knowing when you are decompensating).
That’s a pulse of 96 and O2 sat of 88%
Well then, that might be why! I spot checked a few other times, pretty consistently around 90% or so, lower than normal for sure. Why might this be? Well, no, masks don’t cause you to suffocate...however, it is possible that my n95 plus additional coverage over the 1 way valve
slightly increase my carbon dioxide levels. This increase is CO2 can cause a shift in my favorite thing in physiology (the
oxyhemoglobin dissociation curve), which, when in a lower than normal oxygen environment, can facilitate desaturation. A lot of people don’t realize it but commercial airlines, while obviously pressurized compared to the outside environment of 30,000 ish feet, are generally not
fully pressurized to sea-level pressures of oxygen. Yes, this is part of the reason why you might feel sleepy, sleep like crap, be gassy, and generally feel kind of crummy after long flights. Taken together, the environment of the plane, my mask gear, and my somewhat compromised lung function created a perfect storm for a bit of deoxygenation and a good excuse for me to put away my laptop and just watch movies instead. :) I guess perhaps the 5 hour stimulus and potential compensation of increases in the hormones that stimulate red blood cell production (e.g. EPO...yes, same thing Lance Armstrong was ‘accused’ of taking) wouldn’t be the worst thing for me right now!
So instead of writing letters of rec, IRB proposals and general other academic stuff, I watched
21 Bridges with the late Chadwick Boseman (good action flick), fell asleep during
Cool Runnings (thanks Keely for the reminder of that lovely movie!), and the 2019
Charlie’s Angels (perhaps one of my more preferred Kristen Stewart characters).
We landed in SFO, (and immediately my oxygenation was normal folks!) people deplaned politely and efficiently leaving space and my brother in law picked me up (took me a second to figure out Tesla door handles...) for the drive up the hills to Karyn’s place. Taking off the mask felt great, but not as great as seeing family and the hugs when we walked in!
Through dinner we discussed how I was getting way sick of the shedding of hair so decided why wait...SHAVE IT OFF!
A family affair!
And if you want to watch the live, in motion 10:00 version...
Felt great to be able to shower and “sleep clean” without strings of hair all around or needing to wear a beanie. The stubble will continue to fall out as well, but much less annoying.
Crazy how much had already came out but how much was left!
After the fun and excitement, sleep was long overdue and I had my first Stanford appointment to prepare for!
Waking up bald, refreshed, and enjoying the views!
Stanford Medical is super conveniently like 20-25 minutes from Karyn’s place, so we headed down with plenty of time for my 9:20 appointment. The campus is big, but the office I was going to was in an outpatient building so didn’t feel very ‘hospital-y’ and fairly comfortable. I checked in (a little weird to feel like the new kid not knowing where to go...) and waited to be called back. I first met with the Nurse Practitioner for the doctor and we discussed my history, my plans, etc. He informed me (and I had already actually known this from a call at the airport I forgot about till now) that there was a clinical trial I was potentially well matched for based on the genetics of my tumor that the doc would want to discuss. After a quick exam, I then saw the doc (and his trailing student...hooray for teaching hospitals!).
The oncologist I saw is Dr.
Gruber and when I saw his name I clearly pictured this...
Not really a Christmas movie, but Christmas is as good as any time to watch this classic!
It’s been awhile since I’ve had a new provider. I sort of forgot what that awkward medical ‘first date’ feels like. Each person trying to be nice, polite, etc, and get to know one another a bit. I’m super comfortable in the patient position (maybe even a bit too much?) and so sometimes this can catch folks off guard a bit. This doc was clearly super smart (felt like I could see the wheels turning in his head). My situation is a bit unique in that I’m not really after a true “2nd opinion” since I’m comfortable with my current plan, I’m not really “transferring care”, only temporarily at least, and in some ways I may or may not have an ongoing relationship with this provider.
We discussed my case and he indicated that
the clinical trial was very opportune in that it matches with a variant that was identified in my lung biopsy pathology. It’s being run by Stanford so he suggests it, though there are some logistically challenges (I.e. I don’t actually live here) to overcome if I go in that direction. I’ve asked the clinical coordinator (who I talked to at the airport) for some more info, etc, so will probably make that decision soon. Upside is that it’s an oral med, not otherwise available. Downside is that it’s early phase 1, here, etc.
Doc Gruber was on board though with simply continuing my current infusion protocol (insurance pending) if that’s what I wanted...so I GET TO STAY! The infusions are already scheduled actually....process is a bit more complicated than at home (true visit before hand, infusion at a second location), but for a month, I can deal.
He also wants me to talk to the Stanford Genetic Counselors and get my germ line genetics retested. I had this done at first diagnosis in 2014. It’s not that my genes would have changed, but in that time we have new targets or mutations to ‘look for’ in this genetic testing. All of which can better inform care and specifically target it (i.e.
personalized medicine) my tumor, in me. It isn’t that the Abraxane isn’t a good choice, it’s aggressive and broad. Ya’ll know I’m pretty blunt so at one point when he asked if I had questions or what else he could tell me, the conversation went something like this:
“Well, you could tell me if you think I’ve gotten shit care...I’m not really used to the 2nd opinion thing so I don’t know how that really works”.
“No, you’ve gotten fine care and this is very similar to what we would have done”.
So, haters of non-academic medicine, be silent! Or, trust the process...clinical guidelines are there for a reason...to standardize care, whether you’re in Dayton or San Fran, Phoenix or Rochester, MN.
On the way home, I debriefed with Karyn, particularly about how it felt very different but that I’m going from a provider that’s now known me for 5+ years in super intimate ways to a new person, so there’s bound to be a little bit of awkwardness. We didn’t talk prognosis or anything like that at the appointment. Again...THERE IS NO CURE FOR METASTATIC BREAST CANCER. Even the clinical trials are a “take it till they stop working” approach. My presence of disease was really high, he admitted as much and commented on how young I was to have been diagnosed (it had been awhile since having that tired conversation), that despite pulling out the big guns, we are where we are.
I think I communicated my desires, wishes and personality well enough in the appointment. As we discussed setting up the infusion appointment he said “does that sound good” and I joked “yeah, I mean, as good as chemo can sound....”. He made a bit of a face and reaction and I said apologetically that I don’t take things too seriously. He responded that they prefer it that way, said “Welcome to Stanford” and I got dressed and left. (Don’t forget that you still have to take your shirt off on the awkward first date...)
After heading back to the house I had a meeting to jump on (first one in the head scarf!), caught a brief nap, and then went to play some tennis with the fam on the way to Sarah’s for dinner.
Rotating doubles...the girls have gotten so good!
And the trip to the tennis court was exactly why I’m here. Some movement and activity in the sun, with people I love. When at home I might have otherwise DoorDashed greasy food and sat by myself post—appointment.
I had another call for a bit as we headed over to Sarah’s for dinner, watching my nephew adorably watch the picture frame...
And enjoying the comfort and company of family. While at the tennis courts I had gotten the note about the scheduled infusions and confirmed that I’ll be contacted if any issues with insurance coverage out-of state were to arise. We
CAROAKEd on the way home (did I mention I love this family!), and I headed to bed pretty early, knowing I’d be up early to “proctor” an exam my students are taking right now as I write this (damn those time zone changes!).
So there are still some things to figure out...can I do the trial or do I stick to the current plan? When is mom coming and how long will she stay? Will I stay here at Karyn’s or move to Sarah’s and when? All questions that will be answered in time, but I’m so happy that it looks like it’s going to work out for me to stay here surrounded by support, beauty, good food, and activity.
