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.
