Yes, a happy hug.
I got a happy hug from my oncologist. A hug of relief. Of shared joy. Of gratitude.
After two years of dealing with this shitty metastatic diagnosis, and only one prior “good news” appointment, I got another.
The hormonal therapy plus specific mTOR ‘kicker’ (targeted intracellular pathway) led to a decrease in the size of my lung nodules. Woo freaking hoo.
But, as with anything and this cancer “journey”, it wasn’t just as simple as good news. A look back on the crazy couple of weeks leading up to that happy hug.
Sunday Feb 6 - Reminders of the Impact
One of my lab students shares that she has included me in her personal statement for med school (if I’m ok with that). I go between crying and smiling in bed reading the amazing words she’s written that remind me of the good impact I can have on others. I tell her that I’ll provide critical feedback when I’m a bit less emotional.
Monday Feb 7 - Oncologist Appointment
This was a regular appointment, to get my monthly shot and check in on labs. I hadn’t seen my one since we started the new drug in November. I assumed we’d plan when we would scan (likely end of February, giving me 3 full months on the drug).
I arrive, get my labs, and all is pretty normal. Catching up, talking about COVID and how that went, Flyer basketball, the usual.
Later that day, my comprehensive metabolic panel (CMP) resulted on MyChart (my complete blood count (CBC) reported quickly while in office).
Fuck.
Yes, you’re reading that right…AST 272 (normal high is 55). ALT 580 (normal is 60). That’s pretty damn high. Cue the internet sleuthing and searching. And, trying to calm the nerves of “those are liver enzymes. Liver. Liver Mets. Damnit, it’s in my liver now”.
A little later and the tumor marker we measure (what initially prompted scans that found mets) reports back. 402 when over 30 is normal. Last measure was 263 in December. Fuck again.
Let’s just say that it was probably a good thing I had a virtual happy hour that night after work with colleagues that softened the blow of those reports. Thank you alcohol (and yes, I see the irony of drinking while also worrying about my liver…).
Send my doc a message on MyChart…heyyyyy so, should we move those scans up from end of Oct??
Tuesday, Feb 8 - A somber Patient X
Debriefing all the possibilities with mom on the phone on the way to work. See flashing lights behind me….oh shit, what did I do?
Well, apparently it’s what I didn’t do….as in the midst of moving in September I somehow didn’t renew my license plates and have been driving on expired plates for 5 mo. Cool. Yes, officer, I understand you have to give me a citation.
Cool.
While trying to not think all day about the cancer and the possible expansion of Mets, I had a very ironically timed appointment to guest lecture in the physiology class and give my “Patient X” lecture. It wasn’t super upbeat, not going to lie.
One of things I struggle with in all of this is that we (as a medical community, patients, providers, etc) still don’t really know what the BEST course is, despite all the work and research, etc. Case in point, check out this graph from a paper I was looking at:
All those individual lines? Those are individual patients. And all those different colors? Those are different drugs. And yes, this is a survival curve and the x axis is in years and yes those are mostly single digits. But the point is, there really isn’t one “right way”. They call it “practicing” medicine for a reason. ESPECIALLY with Stage 4 where there are less trials done and less that include folks with lots of different treatments.
So I solemnly told the students to not forgot when they get out there about those individual lines, those individual patients. I’m one of those lines.
More research. Maybe it’s “just” fatty liver? Maybe it’s the drug causing liver toxicity (it happens, even if only in a small percent of people to the extent I’m showing). Come on Romer, write me back! Lots of texts to my few treasured folks I can share academic papers with along with my anxieties.
Wednesday, February 9th - Award Day
Ok, call and message from Romer. He saw the values, will move the CT scan up to this Friday to see what’s going on. Stop taking the everolimus (the mTOR inhibitor) that might be causing the off numbers (both in liver and tumor markers).
Somewhat regular workday, with the background of “what if I’m dead a lot sooner than I thought” playing on repeat in my head.
Check email….wait, what?! I got it!! The Alumni Award from Colorado State that my fellow lady badass scientist and friend Erica had nominated me for. YAY! That’ll bring the emotions to a more positive place! They have a ceremony? Ok, I can make that travel work. Cool. Temporary reprieve from only thinking about this stupid fucking disease.
Move up my follow up appointment so it’s quickly after Friday’s scan. Wednesday after is first available. Fine.
Thursday, February 10th - Interview Day
I applied for a job at UD…an Associate Provost job. So, administration, over a pretty diverse portfolio. It’s kind of a “big girl” job which meant a “big girl” interview day. Almost all on Zoom. Yayyyyyy.
Search Committee for an hour. Public Session open to the university (yes, anyone can come and ask anything…at one point I think like 100 on the call, hard to pay attention). Hour long with 15 min presentation at the top. Catch my breath a little and eat some lunch. Then the real fun begins! 45 min zoom and 15 min breaks….President’s Council, Provost Staff, Chairs and Associate Deans, AALI (the unit the position oversees) Directors. After those 4, hustle up the hill for the 1-1 with the Provost.
Exhausting.
But I think it went well. Not sure what outcome will be yet (should know soon), but it was a good experience either way. A lot of self-reflection, having to put myself out there, all good things. And to be a finalist is an accomplishment in itself.
Friday, February 11th - Scan Day
After an exhausting interview, don’t we all want to go lie on a scanner and find out if our health outlook has majorly changed?! Well, sometimes we don’t get a choice.
7:30 AM Scan. Got to drink contrast and IV, since doing both Chest and Abdomen. Hadn’t done an abdomen since initial diagnosis March 2020 but this will allow best visualization of the liver.
Busy day of a faculty candidate for position in the department on campus, research, etc. At some point, the scan results.
FUCK. I mean, cool, the liver is clean, but continued progression?!?! And doubling?!? God, damnit. Send some update texts to a few folks. Wallow a bit.
Wait. Wait a second. That 9x9 size looks kinda familiar, and wasn’t it 2.7 the last time? What radiologist read this? Was it the same nodule location as last time? WAIT. WHAT THE ACTUAL FUCK. Look at that comparison date. March 2020?!? That was my first scan. What the hell? Did this guy (and no assumed gender, it was a dude, I stalked him on the Premier network, he’s not my friend right now) ACTUALLY compare this to my first scan 2 years ago?! Rather than any of the SIX since?! Especially the most recent? Check all other scans….yes, they were appropriately compared. This is weird. Maybe because the last abdomen scan was 3/20? Still, so, many, chest CTs since then….
Send a note to Romer. It’s Friday, assume that I won’t hear from him. Resend text messages to rage about this goddamned fucking radiologist (sorry Freddie, but you did take the brunt of my anger) and how maybe things aren’t so bad. In fact…if it’s the same representative nodule, it could actually be better? Can I compare reports like that? Ugh, maybe I shouldn’t be this invested. But it’s my life!
Thankfully had a fairly busy weekend. Some data collection, watching a Flyer victory, Super Bowl. I try to resist too much thinking, worrying, but it’s fairly unavoidable. Reflecting on the up and downs of the week, no wonder I’m a little tired.
Monday and Tuesday 14/15 - Distractions at Work?
Pretty normal and slightly busy days. I plan that trip to Colorado for the award. Yes I will stay an extra day, (reminders of a terminal disease and my ABC’s help with that). Valentine’s Day. Avoid any wallowing as I’ve got bigger things on my mind. Still no word from the Doc…maybe it’ll just report? Maybe he’ll just discuss at the appointment? I. HATE. WAITING.
Wednesday, Feb 16th - The Follow Up
Journal Club with the lab at 8 then over to the doc after.
As I sit in the hallway after checkin, waiting for them to call me for labs, the doc walks past…
HIM: “oh why don’t you just come on back”
ME: “Ok”
HIM: “You’re here to talk about your scans, right”
ME: “Yes, and why did they compare to March…I can’t…”
HIM: (interrupting) “I know, I know. I’m getting a radiologist on the phone to ‘chastise’ them”
ME: “This is probably what I get for always being so on top my results in MyChart, huh???”
I get settled in exam room. He comes in, on his cell phone, changes it to speaker phone and sits across from me.
HIM: “Yeah, ok, so Anne Crecelius, CT chest, abdomen, compared to March…”
RADIOLOGIST on other line (who I’m pretty sure is my favorite from names on reports…yes, I’m invested in this, haha): “Ok, yeah, yes, I see, oh. Ok, so this isn’t an excuse, there’s really no excuse, but I think the comparison was because that’s the other abdomen….”
(Me silently high diving myself, a shared eye roll between doc and I)
HIM: “Ok, yeah so can you compare and look…”
RAD: “Yeah, ok, so he had 2.6 x 2.6, I’m seeing more like 2.4 X 2.4….”
(Doc mouthing “BETTER” to me as we both stare at the phone)
RAD: “ok, yeah, October, 2.7, yeah, it’s definitely smaller, and here’s another, yep, ok it too. So I’ll write up an addendum formally but it’s looking like decreased size”
HIM: “Ok, so clinical improvement….”
RAD: “Yes”
HIM: “Ok, great, thanks”
He stands. We happy hug.
It was a whole new experience sitting there, listening live, to the read. The understandable distance in the radiologists voice (who probably didn’t know I was in the room listening!) as he just did his job…trying to not throw his colleague under the bus, but own up to a mistake. Seeing my own doc waiting there, just like me, on edge, he’s invested too.
After the happy hug, we sit back and say “ok, so now we just need to figure out how to do this without my liver getting angry”.
The metabolic panel will take a bit to result. We talk dosage differences, it’s not uncommon to have to scale back the dose. Minor insurance squabbles ensue about name brand vs generics. Whatever, I’ll pay whatever if it’s working (and am grateful that I can).
I share the good news with Mom on a call and with others via text. I’m not nearly as practiced at sharing good news as I am bad.
I go to work, another candidate, another busy day…hmmm, well, if I don’t get the job at least it won’t be on top of bad cancer news.
Later in the day, the addendum comes through. Seeing it in words actually helps. Seeing my doctor’s notes on the appointment make me laugh.
Yes, I was overjoyed. And yes, it is encouraging.
The metabolic panel comes back later in the day and liver enzymes are almost back in normal range after the pause in the meds. The dose lowering should work. We’ll keep an eye on it, but we bought some time. And the Mets actually got smaller! I would have been happy with stable, but they showed improvement! Hell yes, fuck you nodules.
And since…
I escaped to an AirBnB in Kentucky with a colleague to do some writing. I forgot my laptop charger and had to but a new one (a minor inconvenience that I’m happy I can be pissed about because I am not pissed about worsening cancer results). I take a monster nap that I think was my body physically catching up to the emotional rollercoaster of the past week and a half.
It was a fairly productive couple of days. I’ll start my new lower dose on Monday. And check liver at the beginning of March when I get my normal monthly hormonal suppression shot. I still have to remind myself I finally got some good news, it sort of doesn’t seem real. I’m more hopeful for the next few months, more excited about travel plans, less guilty about applying for the job (that I’ll hopefully hear about this week).
Grateful for that good news. For a doctor and office that know me and I feel comfortable in. For the people who were on the rollercoaster ride with me. And oh so grateful for that happy hug.
