Diagnosed with breast cancer a month before my 29th birthday...AND THEN diagnosed Stage IV during a pandemic in 2020...keeping those who care up to date.
It’s been over a month since I last blogged, and what a month it was! All good things really, so that’s the summary…things still good, living my best life, etc. For those interested in more details, read on.’
Last I left you, I had just spent some amazing family time in Colorado at the ranch (which is in the final process of being sold…a long time coming, and a good move for the family. How lucky we all were for so many great times there!). I was only home for a night and then I was off again, this time to Lake Placid NY! A collaborator had invited Paige, my summer research student and I to join his group doing some field data collection at a rugby tournament hosted there. The project has been a multi year effort to collect data post-match, specifically looking at concussed players. In the ‘say yes’ spirit, I agreed and worked it out for Paige and I. We flew into Burlington, drove over to NY (via the ferry!) and spent some time walking streets of Lake Placid before the rest of the crew arrived. The next few days were hard, rainy, busy work, collecting a ton of data. We planned a couple extra days on the back end, and spent them hiking, bobsledding (did you know this is a thing at the Olympic training center?!), and eating good food. I’m so lucky to have such a stellar student and one who was pretty fun to travel with. It was great to be able to show her new things (staying in a B&B, new foods, always jump in the lake! etc) and she was great company. She also arranged the sweetest gift…a photo book including notes from lab alumni over the years. It was super heart warming and something I‘ll always treasure. If you haven’t been to the Adirondacks, I highly recommend! So beautiful. It was fitting my only other time there was my first First Descents trip, more than 5 years ago. A lot has changed since then, but it’s still a beautiful place.
Back home, it was a busy few days of getting caught back up at work, working on some projects, and then it was time for Treatment 1 of the new drug, Doxil. Doxil is the ‘red devil’ or ‘magic koolaid’ as I prefer to call it.
It’s fairly common to have a reaction the first time, sort of like an allergic-type response. I did, but it cleared with some additional steroid and benedryl. Points towards my ‘best cancer patient ever’campaign in that the nurses said I was probably the calmest person they’ve ever seen who was starting to have a reaction! Probably was able to keep my cool because I remember the feeling from when I got a similar drug first time around. Since then (it’s really impressive how fast cancer progress goes) they’ve reformulated it so it better targets just the cancer cells, meaning that I should keep my hair! As grey as it is :). The side effects were not present—>minimal. Perhaps a little fatigue, which is such a hard thing to really judge.
After treatment, I enjoyed spending time with my good friend Kevin that was in town for a visit as well as an old college friend Rachel who was visiting her in laws. I’m so lucky to have long term friends that I can be totally honest with…whether it’s talking about end of life decisions, finances, the latest meme, and everything in between.
Since I’m on sabbatical, I had strategically planned a backpacking trip in northern Michigan the week before classes started in order to force myself to disconnect from the meetings, emails, preparations for the semester. I drove up to Lansing and from there, Erica, Ted and I headed up to Painted Rocks in the UP.
So. Amazing.
Seriously, what a beautiful place! There’s a 50 mi through hike of backcountry sites…Erica and I did about half, (3 nights backcountry), Ted did the whole thing. 20+ miles of hiking with 35 lb pack…take that you stupid lung nodules! We also kayaked, explored Grand Island, and I had my phone in airplane mode and didn’t use a screen for 6 days. Magical.
We totally lucked out on weather (it was perfect). Hiking with 2 other physiology professors was probably a little nerdier than some might like, but was perfect for me. I got some pretty gnarly blisters that I toughed out (Erica tells me I downplayed it a bit much…), the black flies were super annoying on some beach afternoons, but overall, it was just a really great time. 10/10 recommend.
I was heading to Chicago for Tucci’s birthday after and it worked out I got to drive through and see Sonja at her place in Iron Mountain (I essentially circumnavigated Lake Michigan on this trip). It was great see her and her people, even if for just a night. I arrived in Chicago on the day of Tucci’s 95th birthday celebration. That stubborn ol’ lady still hanging in! It was great to see some cousins and extended family. We celebrated Monday, her actual birthday with Portillo’s cemetery trip, and driving around ‘the old neighborhood’. It’s kind of crazy to think of everything she has seen in nearly a century of life! Thanks to technology we connected with the whole family one day on FaceTime…it’s understandable how it’s hard for Tucci to keep track of us all!
From Chicago, Mom rode back to Dayton with me to help with the big move! As I said before, I was downsizing/simplifying a little from the house I was renting to an apartment home rental, a little further in the ‘burbs, but with no yard work, single story, attached garage, etc. Mom is a packing machine! We figured out she’s helped with 11 moves and in that time only one kitchen item has ever broke. She’s seriously like a professional! We divided the work over a few days (I of course had to draw up a schedule), with some days having me go to the office for a bit to get some work done. Movers came on a rainy day (ugh) that thankfully lightened up, and we unloaded on Tuesday and then spent the next couple days unpacking. It felt slow to her and I, but being totally unpacked in only 4 days isn’t too terrible…
I love the new place! It’s bright and clean and my stuff works really well in it. I’m excited for a dishwasher and a big kitchen and the garage is already coming in handy. Riley has adjusted well, finding plenty of new places to explore (she’s mastered the counter, fridge, top of cabinet move).
It was so great having Mom here for 2 whole weeks! We got to visit with friends, see folks she had met on study abroad, had some really delicious meals, watch a lot of tennis, and in general spend some quality time together. Mom also got to accompany me to a doctor’s visit, where all was well…the plan will be to rescan in November to see if the Doxil is working. My doc is keen to work around holiday schedules (Chicago for Thanksgiving with Mom and Tucci, Christmas in Boise followed by whole family fun through New Years), which I appreciate. I had treatment 2 on Friday, and all went well again. Hard to tell if the napping after is really due to the drug or just because my couch is pretty damn comfy :).
Yesterday, Mom and close friends helped celebrate my 36th birthday.
I know you’re not supposed to say what you wished for, but I’ll share…I wished for another birthday. They hit a little different when you have a terminal disease, I’ll be honest. Mom kept saying that if she didn’t know better, she’d not think I was ‘sick’, and honestly, this past month or so, I’ve probably felt the same. I hiked, I packed, I did what I needed to do. But there was also a lot of time for reflection. Floating in a mountain lake in NY, hiking the ridge looking at Lake Superior, sitting in zoom meetings (at home, in Chicago, in the chemo chair). A lot of thinking has gone on.
I wish I could be more profound or articulate better where I’m at or what it all means. For now, I really am just focused on trying to enjoy the moment. The bit of respite that sabbatical has provided has been welcomed (though I think it also shows me I couldn’t not work/do something). The people I’ve gotten to spend time with are so special to me. As part of moving, I purged A LOT. For many reasons, I think it’s always something you should do when you move, I reread Marie Kondo’s Art of Tidying, and practically speaking, at some point when my family has to go through my stuff when I’m no longer here, it’ll be less for them to do. I’m a bit of a sentimental pack rat so it wasn’t the easiest task. I did take the KonMari approach though of thanking things for their service…for what they’ve done for me, or in my life. It’s a little cheesy, sure, and Mom was cracking up sometimes, but it’s true! I am grateful! And it does make it a bit easier to pass things along. Gratitude has maybe been one of the best strategies I have to deal with the shit parts of life, so I might as well apply it to downsizing as well.
So this past month plus, I’m grateful…for the travels, the time off the grid, family and friends, a successful move, and a birthday. Upcoming I have a fly fishing trip in Ohio with a cancer group, getting back to working more, a trip to California in October, a COVID booster shot on Friday, and a treatment the first week in October. Until the next time…
I’ve been watching the olympics, as I’m sure you all have too. I will always be in awe of the balance beam. The skill, strength, precision, and ability to block out the risk just makes this event so amazing to watch.
Balance also happens to be my mom’s favorite word and favorite concept. I’ve got gifts with the word on it, I used it as a theme for the latest science-audience post I wrote about my cancer and teaching, and as a high schooler I wrote about how the balance of the universe and conservation of mass was my favorite concept.
So this post will have balance. Good, and bad. Smiles and tears. Highs and lows. I’d rather end on a high note, so let’s start with the downside.
Two weeks ago, I went in for a CT scan, my ‘routine’ after 3 rounds of a treatment to see whether the cancer had grown, stabilized, or shrunk. 2/3 options would be “good news”. But, you know, I like to be special, and I always expect the worse, and my expectations were met. The cancer grew. My lung nodules got bigger, almost doubling in size, despite the infusion chemo of Halavan I had been getting 2/3 weeks for the past 3 months.
So that sucks.
Another bullet shot out of the gun.
Another drug crossed off the list.
Shit news. That I actually read on the toilet! Haha, I couldn’t wait to get back to my office after seeing the MyChart notification. Oh the instant-always connected world we live in!
I texted my family, met up with a friend for lunch and then had to prepare a presentation I gave that afternoon. Sometimes you just got to fake it till you make it, put on a smile and get shit done.
I wouldn’t be seeing my doctor until till Friday. So of course, as per usual, I spent the next couple days rereading clinical treatment guidance, scientific studies, my previous tumor genetic reports, etc.
When I saw my doc, we wallowed in mutual dissatisfaction and then got to talking about potential next steps. I really respect him and his process and he said he wasn’t ready to make a decision, wanted to consult the breast specialist from Indiana University I previously saw, check with a radiologist on the read of the CT. That was great, because I told him I wasn’t going to change my plans for the next 2 weeks of travel and fun.
The next week, he called with a plan. There’s a clinical trial that would be good to try, but enrollment is currently paused for a few months. So instead, we will continue going down the list of traditional therapies and move on to a new infusion chemo drug, Doxil. This drug is similar to what I had upon my first diagnosis ~6 years ago. But, since then, they’ve improved the delivery of it, so side effects are less. I might even get to keep my hair! The nice thing is it’s only a once a month infusion, so hopefully scheduling won’t be too terrible or interfere with already made plans. It isn’t a drug I can stay on long-term though, as it is cardiotoxic (bad for the heart). Hence, I have a heart echo scheduled for when I get back into town.
So yeah. Not great news. Getting worse, not better. One more option gone. But some options ahead perhaps. We may eventually need to re-biopsy the lung to confirm the exact tumor type, which could also open more options potentially (some drugs only for some tumor types).
But the good news! The balance!
After getting the shit news and discussing with my doc, it was only 2 days later that I got to pick up my sister and niece and head to Cedar Point. We spent Monday chilling on the beach till it was time to pick up my nephew who flew in also.
A dinner of “amusement park” style Hibachi to celebrate his arrival capped off the night. Tuesday was a super full day of fun at the park. Thankfully, more rides accommodated larger riders, so I rode a bunch and had a great time.
We stayed that night as well, driving back to Dayton the next day. Unfortunately, a nasty head cold made its rounds through my nephew, niece and I, so the next few days were pretty chill. My sister left Thursday early to go prepare the Colorado ranch for the family’s arrival. My niece, nephew and I checked out the Air Force Museum (so cool, and my nephew’s knowledge of history is amazing), ordered food, and were nice enough to accompany me to campus for my student’s presentation.
We Top Golfed on the way to the airport and had a pretty seamless travel out west. Destination: Grand Junction then up the Monument to the Dirty Boot!
It had been since Christmas 2019 the whole family had gotten together (#thanksCOVID) so I was super excited to spend some time with everyone! And, I love the physical place there. It feels like home, and the desert and mountains just make me smile, even in shit times. The whole clan is 14 strong, with 3 teens, 3 little kids, 3 couples, mom and me. We were the last to arrive and the whole house was asleep, but the next day we began a few days of fun.
Hiking, cooking, olympics watching, a gorgeous lake day (had it all to ourselves!), dance parties, birthday celebrations, games, tacos, dinosaurs, watching thunderstorms, and some planning for this Christmas when we will all hopefully be together again.
I was able to enjoy it all, and often forgot about the cancer, the treatments, etc. But it doesn’t go away. It impacts future plans. It makes it harder to opt for the active option of daily activities. And, combined with the massive head cold/cough, it makes for some serious hacking up of lungs at times. I only got a little sad when I had to say my goodbyes last night. I would be leaving for the airport to catch a 6:30 flight before anyone would be awake, so had to give hugs and goodbyes and then pack and head to bed. With family, I know that if/when things turn downhill, I probably will see them all again, but now there’s always that “is this the last time” worry. In this case, is this the last time that our family time will be like this? Easy, without my cancer causing much interruption. But worrying doesn’t do much good. So as I sit here in Salt Lake City waiting for my flight back to Ohio, I won’t worry. I’ll watch Below Deck (I love my trash TV), people watch, write this overdue post, and move on. In this particular case, I’m moving on to another trip tomorrow, to Lake Placid for work, doing concussion testing post injury at a big rugby tournament (with some fun mixed in).
The break in treatments has been kind of nice. I can’t say I feel that much stronger, better, less fatigued…even though it’s been like a 3 week vacation. But mentally, it’s been nice to not have the appointments. I’m actually looking forward to having my new treatment schedule, which I should get next week when I’m back.
As always, thanks for the good thoughts. Keep on keeping on.
For those who have been following since the beginning of the metastatic diagnosis early in 2020, you’re familiar with my ABC motto…Adventures? Yes. Bullshit? No. Cancer? Fuck off. Well, June has been a month of trying to live up to this motto and I think I’ve been fairly successful!
First, the medical update. I completed round 2 of Halavan. Round 1 actually wasn’t without some difficulty (sore throat, elevated liver enzymes, fatigue). A small dose reduction was made and round 2 went much better. I’m halfway through round 3, and after this one, we will scan (mid July) to see what if any progress has been made. May blood tumor marker was in the ‘right’ direction (down), but the markers only tell so much of the story. Physically, I’m still doing fairly well, though I have developed a bit of neuropathy (numbness, tingling) in my left hand mostly. It isn’t too terrible yet, just makes typing a bit more interesting!
Now on to the adventures!
Along with a busy summer of research, I had planned a few trip for June. First, was to get out to Colorado and see some friends, I hadn’t since New Years 2020 (when A LOT of things were different!). So after a Friday treatment, I headed to Cincy to fly out to Denver. Friday I got to catch up with a great FD friend Flash for some dinner…
And spent the rest of the night with Cat and her family. Saturday morning was grad school reunion style of Cat, Nat, Leora and I plus families…
Then it was off to the mountains with Cat and Leora to head to the Mt. Princeton Hot Springs. I’ll let the pics speak for themselves in terms of how unique and cool this place was. So much fun to hang, stay the night, and wake up to relax mountain-side (and go down the slide!).
Lunch in Buena Vista (BV for the locals…) and then back down to town, dropping Cat off and heading to Louisville with Leora, where she’d be my wonderful host for the next couple of days.
I spent Monday hiking (not to the top with my current fitness, but still getting my steps in!) at Chautauqua Park and the Flatirons….
Before I headed up to the Fort to meet up with grad school mentors and friends Jen and Frank. It was great to catch up, and the beer and food at Crown Pub is still enjoyable. Tuesday, I enjoyed a walk out Leora’s backyard that was nearly as beautiful as the day before and then headed to CU to meet a collaborator I had only seen on Zoom screens to that point. A Pearl Street lunch, coffee with LJG and I was on my way to the airport, via dinner with Rachel, a great friend from UD. All my high school friends have now moved back to MN, but it’s still so fun to spend time with friends from various points in my life while I’m in one of my favorite states!
Back in Ohio, I stayed busy in the lab with my wonderful students. Working hard and having fun (and extending my mentoring to suggesting the kids pack at the movie theater…thanks Mom for that smart snacking advice!).
We even had an “insta famous” moment, when Adam Grant, author of Think Again commented on our post about his great book. Social media isn’t always all bad!
A day of hooky at Kings Island with Diana and fam was fun, though sort of depressing as my new bad ass cancer fighting body is also a little big for some of the roller coaster rides….additional motivation for healthy living I guess.
The latest adventure was of epic proportions! Some of my high school friends were able to find the time in their busy lives to come down and adventure with me! The idea came up in conversation with Alexis, about how this year was the 15th anniversary of my dad’s passing. And, that I had said I was going to spread his ashes in WV where he used to raft, got me into it, etc, but hadn’t yet. So, why not? Why not go and do it? So we did!
Sonja arrived Thursday night late, Friday I finished my ‘camp mom’ duties of packing bags of toiletries and necessities, we picked up a rental car and then headed to Cincy to pick up Alexis, Heather and Keely who had flown in from Minneapolis. We spent the 4 hour drive through Kentucky’s rolling hills and into West Virginia playing catch up, singing pop 2K songs, and busting any preconceived notions that ladies are cleaner/less vulgar than men. We rolled into Fayetteville WV, crossing the New River Bridge (America’s Newest National Park!), ready for adventure! Our home for the next two nights would be camping at Adventures on the Gorge, a terrific resort I’ve frequented before.
I’ll be honest…I had to convince the girls a bit that whitewater rafting would be fun and they’d enjoy it. Luckily, I KNOW MY AUDIENCE. It was a fantastic time. We had an AMAZING guide Dusty that we bonded with on and off the river. The weather was great. Me and my big mouth got dumped early (I deserved it). The robust rafting crew did great on the Lower New. Just a few highlight pics…
And yes, I realize that if you haven’t been rafting, rafting pics are pretty lame…we learned that as kids when my dad would always want to show us his pictures. Speaking of Pops, after the great day rafting, celebrating, and going to bed at a time reflective of being in our mid-30s, Sunday was a pretty special day. We drove a little ways over to the put in for the Upper Gauley, the river Dad had rafted with his friends back in the 80s/90s and which had originally brought me to WV (on his suggestion) in college and since. There was a nice spot to say a few words (glad we did the I Am From poems at work last year), spread his ashes, and refill his urn with river rocks representing everyone in the family. It was so nice to have friends with me, especially those that knew my dad and were there alongside of me 15 years ago at the funeral. In true Anne/Crecelius style, there weren’t just tears, but also some laughs (that calm pool didn’t really clear the ashes out as I might have thought….maybe he’s just waiting for dam release and high water!).
A quick waterfall stop on the drive back, more food, laughs, “inappropriate” discussions, and it was time to drop the girls back at the airport for their flight home. Lex put together an amazing video of the trip…it’s about 13 minutes, she included the video from on the river, edited it beautifully.
In true spirit of Lee, have to share the rafting footage…which, let’s be honest, if you havne’t been there, it’s way less exciting to watch!
Sooooo, what about the cancer, Anne?
Right? Like, both of these trips were the day of/after chemo treatment. And I’m bald (though hair growing back)! And dying! How does that all factor in???
Great question. Really. Here’s where’s my head’s at with it. Did I plan these trips in case this is the last time I see some of these people? Absolutely. I sure hope that’s not the case, but who really knows. Time will tell. And, really, I want the people I love and that love me to see me and remember me and spend time with me as ME. Not as some cancer patient devoid of energy and life. I think if you asked most of the people I saw (and I did with some!) they’d say they maybe couldn’t even tell I’m “sick”. Granted, I make my morbid joke a day, lack eyebrows and eyelashes and am at the tip top of weight cycling I’ve done my whole life. Maybe they see that I’m trying to embrace a ‘no bullshit’ mentality. But other than maybe a bit earlier bed time, the trips and adventures were pretty “normal”. Which is exactly what I wanted. This thing I’m living with is in my life, but I’m committed to not making it my entire life, as long as I can. So I’m going to travel, and hike, and maybe those goodbye hugs were just a little tighter, and a little longer.
While I don’t wear a “I have metastatic breast cancer and there’s no cure” t shirt around, I’m not shy about talking about it (clearly). I’ve had folks say some really, really, kind things and do some really kind things this past month as I’ve shared more, met people, done different things, etc. It’s really amazing. Some of the girls and I had a heart to heart after rafting (maaaaybe fueled by those PBR pitchers at the bar), about the future, the unknown, and my likely lack of a presence. But, I do really believe that one’s legacy and impact goes beyond their physical presence and that’s all I hope for myself. My legacy can be in spurring old friends to get together when they normally wouldn’t (or only did when I came to town). It can be in convincing my friends to push their comfort zone and try something they wouldn’t have normally and walk away LOVING it. For my students to ask a new question, have a bit of fun, or just see each other as people.
There’s a constant balance of “the end” and “the fight” (which the whole “fight” thing is lame and dumb and it’s not that people who die of cancer didn’t fight, but it’s such common terminology, it’s hard to avoid it). I waver between the morbid thoughts (‘oh hey, do you want this jacket, because I’ll probably not need it’) to more entertaining morbid thoughts (like when Heather mentioned sky diving and I said “oh hey, I can go for free because I’m dying!) to thoughts that aren’t morbid at all (‘so when are we’re going to do this again?!”). It really kind of depends on the day, my mood, the activity, etc.
This last month I was able to see and spend time with people that have been so important to me in life. I was able to do things I enjoy, to accept new experiences and reminisce about old ones. Today was another great day with the Dayton Fam celebrating Maura’s birthday with a zoo trip, casino, and good food in Cincy!
This next set of scans will once again be telling…do I stay on the same drug and same schedule? Change to something new? If so, how is it? The questions can be endless if I want them to be. For now, I’d rather keep planning the adventures to come (Family visit! Trip to Colorado! Work trip to Lake Placid!), keep trying to minimize the bullshit, and definitely telling the cancer that it can just fuck right off.
As always, I continue to be overwhelmed and so grateful for the amount of support I have in my life. The past few weeks, between the Science article, the news about progression, stopping wearing my head scarf, etc. Big to small, you all are awesome. Thank you.
A fairly (at least anticipated because I have dinner guests arriving soon!) quick update on the new drug.
Quickly science background is that Halavan works to disrupt microtubules which are important for cell growth. Cool. I’m not an organic chemist or a pharmacologist so I don’t really know why that means that we can give the dose over a 3 min push into an IV versus a bag that hangs for 20 min, but that’s the case. The chemo routine is pretty much the same. Arrive, grab a chair, look to confirm I’m the youngest in the room by a solid couple of decades most of the time, politely chat with the nurse (usually the same, although sometimes a floater). Last week, for my first dose, I had to sign the consent, but since I’m a veteran there wasn’t much preamble. IV in the arm (thank you right arm for being such a good target for so many sticks!). Draw blood for labs. Hang out for 15 min while labs run. Have the nurse hand over and say they are fine (thus far) and then actually examine them to see what that really means. After that they can prep drugs. I do get a steroid pre-treatment with this one. It’s common to prevent nausea and can help with any allergic reactions. 20 min later I’m done with that and the nurse sits and slowly pushes the drug for.a couple minutes. About an hour both times, pretty slick.
So far, so good and I seem to be tolerating it well. Have some rosy cheeks/facial flushing, but nothing overly concerning. No nausea or other GI distress. Energy levels are decent. I played a doubles tennis match last Saturday. I’m going adventuring tomorrow. So far no major neuropathy (tingling, loss of sensation in arms in feet), although that can occur more commonly as doses accumulate.
Next week I have off, then I’ll see the doc for monthly checkup, full lab work up before starting cycle 2 (remember it’s a 3 week cycle, 2 on, 1 off).
Mentally I continue to vacillate a bit between being pretty good and planning my funeral. Literally. I sent my BFF some amazing insomnia fueled texts with plans for the anti-funeral I have in my head (think about like a graduation picnic/party, at various sites across the nation, possibly with branded material and party favors). Shared it with my mom too. By the way, MY MOM ROCKS. I realize Mother’s Day is has passed, but seriously, she’s the best. Tough lady, super loving, and so far our mutual plan of being totally honest and being able to talk about “real” stuff is going well. I read things on Facebook cancer groups about people who “don’t know how to tell” their parents, or have these troubles relationships and not only do I not relate to it, I generally tell my mom exactly how much I can’t relate to it and how lucky we are. But in addition to sketching out possible end of life plans, I’ve also sketched out basically a trip a month, with adventures in between.
I did make one decision that was somewhat motivated by possible declines in the future as well as other factors. I’m moving! While I love my little house, I’m looking forward to moving to a pretty sweet 1 story, with attached 2 car garage apartment, a little in the burbs, but still close to lots of things and 20 minutes from work. I won’t move till September, so much more on that later.
Work has shifted to summer mode...SUPER quiet, shorts and sandals, and shorter hours. I’ve got some great students working with me for research, so am confident in building some good momentum going into sabbatical. Some of the students are documented their work by posting to a new lab Instagram account...give it a follow! @ud_physiology It gives a good luck into my life. Sharing health news at work is always the hardest, but again, everyone is supportive and willing to be flexible and that relieves a lot of stress.
I was able to volunteer for our in person graduation and so was one of the few faculty able to congratulate our students. Many shared that it was so nice seeing a friendly face and with my uncertain future, I was really happy to be able to be there.
Friends have arrived so as good of a stopping place as ever! I’ll just go sans links and pics with this one!
Metastatic cancer is so much waiting. Waiting in doctor’s offices. Waiting for results. Waiting to see if ‘it’s working!’ or if it’s “so...what’s next?”. There’s a big difference between that exclamation and that question. And the only thing there is maybe more of than the waiting, is the questions. So. Many. Questions. The simple ones like “are you currently in pain?” and the hard ones like “how are you feeling?”. Questions others ask me, and the questions I ask myself. “What will I be able to do in 6 months?” “Will I be alive in 6 years?” I do my research, it’s what I’m trained to do. I look up the statistics, I interpret results cautiously. I take into account the anecdotes, but lean into the percentages.
I said to my therapist yesterday, we are all the protagonist of our own story. We all want to feel special. We want to be the exception. And, to some extent, I have been. I have an advanced degree, going on percentages, that’s ‘special’. I’ve received honors that only a small percentage have shared. There’s probably other characteristics that put me in a minority or that show that sometimes the exception really is the rule. But, other times, we’re just one of the majority, one of the many, and we can’t rely on storybook plots.
That’s a long preamble and perhaps more deep and/or depressing than needed. Here’s the long and the short of it:
My most recent scans showed that the benefits of the first 3 months of my infusion chemo (decrease in size and number, per the February CT) have disappeared. The lung nodules have increased in size (doubling) and number over the last 3 months of the same therapy. There’s a few minorly suspicious other lymph nodes, yet still no signs of liver involvement and/or progress of the sternal bone metastasis.
So what’s next? Well, we grab for another straw. Try a different class (science speak for the way in which a drug works) of chemotherapy (Halavan, more deets later). It should be similarly tolerated, it’s a 21 day cycle with 2 weeks on and 1 week off. We’ll rescan in 2-3 months and see if it’s working. If not, there’s basically one more class of drugs to try before clinical trials (if any exist and I qualify for) become the only real option. 4th line treatment, here I come, just a bit over a year past diagnosis.
The scan was Tuesday. I saw my doctor yesterday morning. But it’s been 2 months since my last post. I really was hoping to be able to say “great results! We’re going down to 2 weeks on, 2 weeks off”. Last doctor’s appointment, in anticipation of this latest scan, my oncologist and I even talked about remission...I had such a positive response to the first 3 months on Abraxane (side note, I always have to be careful in wording things...my default is to say there was progress...but that means the cancer didn’t progress....it can get confusing, probably why I often default to the more clinical ‘there was a shrinking in size and number’). Alas, that isn’t the case. The update is with less than ideal news.
So that dreaded question of how am I feeling?
Physically, I feel basically the same. I’m still pretty out of shape, mostly, at least I think, due to the excess weight I’m caring. I have an occasional soreness in my sternum, or tinge of pain in my arm, a zinger of numbness to my foot or hands. But overall, well.
Mentally, I feel sad, disappointed (this is why I don’t let myself get hopeful people!), angry, frustrated. I can sprint through those stages of grief faster than I run in real life, that’s for sure. It’s that waiting, and those questions. I had started to make plans further out to the future. I had pushed back the Africa trip due to COVID, but didn’t question that next summer I’d be able to go (and yes, I still may, but it’s not certain and perhaps even not probable). I was making plans for my sabbatical. Plans that even meant spending time on other future pursuits, like writing grants. And this week I was reminded of the uncertainty of it all, the fragility.
And yet, despite the shake up of this week, there’s been so much good in the past 2 months. Among the regular frustrations, there were a lot of really cool things to highlight.
-The end of Women’s History Month and the Women of UD celebration was really cool. Yes I did walk to see my face on a building and pose like a dork in front of it.
-My awesome students busted out a TON of research, n=16! In a matter of weeks.
-I spent Easter weekend camping nearby with my dear colleague Diana, one of her adorable children, and then a great family lunch and egg hunt.
-I taught, did recruitment events, did a ton of advising and the normal academic nonsense.
-I participated in our campus Relay for Life. Many of you were probably some of the SUPER generous donors that helped me/us raise a ton of funds! I definitely could have posted about this event itself. Supportive colleagues, steadfast friends by my side. Getting to connect with the family of the colleague who passed from cancer at the end of last year. Seeing students come together to support a cause. It was truly a great night.
-End of the semester celebrations with my lab crew. These kids have been a bit of normalcy and a huge support this year (and having Mimi the 4Paws dog as part of the lab never hurts the vibe...)
-Just this week, the day I got scan results reported, a distractingly good time at the Reds game.
-Professionally, I authored a few things related to my diagnosis and how I incorporate it into my teaching. One, a small professional association blog. The other, a much bigger deal, an essay in Science magazine. It just went live yesterday and I’m amazed that I’ve already gotten multiple people from across the globe, that I’ve never met, reaching out with well wishes. People can suck, don’t get me wrong, but they can also be pretty amazing sometimes.
So what’s next? A new treatment, yes. But come on, you guys should know me well enough by now to know that’s not all. I can’t let it be. That’s my fight, my battle (although as I’ve said before and is fairly well established in the literature, that war analogies are terrible as they relate to cancer, and COVID too). Along with the new treatment, I’ll continue to play tennis, to row on the crew team (novice this year since fitness is low). Tomorrow, I’ll celebrate my 1 year anniversary with Riley cat. I’ll volunteer at our in person graduation (woo hoo UD for managing COVID!) on Sunday. Next week is end of year meetings and then a summer of research, tennis, self-care. Starting to connect with folks now that most are vaccinated (GET YOUR VACCINE PEOPLE. I CAN’T HELP HAVING CANCER THAT MAY KILL ME BUT YOU CAN PREVENT YOURSELF AND OTHERS FROM POTENTIALLY DYING FROM COVID. FULL STOP.) Planning for a few adventures with family and friends, and looking ahead to a year long sabbatical that allows a bit more flexibility as well.
That’s what’s next. Trying to not wait. To Mariekondo life as much as possible, doing the things that spark joy. For the rest? Thanking it for the joy and/or service it’s provided and moving on.
Here’s a morning selfie while I write, to show the salt and peppery regrowth (more salt than pepper admittedly). Despite the waiting, despite the questions, I’ve got to keep smiling!
