3 Months at a Time

 Hi all, it’s been a bit.

About 3 months actually.  The timeframe in which I sort of live my life these days.  Last time I checked in, I was pretty stoked that the oral hormonal meds I was taking caused regression in my lung tumors, and my doc and I had celebrated with a very happy hug.

Spoiler alert…my last visit was less happy, my last scan showed progression, and I continue the slow march down The who-knows-how-long road of metastatic breast cancer.  

Scans like these mean in some ways that everything has changed and in other ways that everything stays the same.  It’s the exhausting part.  The anxiety leading up, the waiting for the MyChart notification, the research before meeting with the doc, reviewing the visit notes to make sure I didn’t miss anything, telling family and friends.  And yet, I’m still here, giving those reports, and that IS what really matters.  

Medical rundown first, and then an update on what have actually been a pretty freaking amazing 3 months.

There’s progression in the lung nodules/tumors.  Meaning, that it’s time to move on to something new in terms of treatment.  However, of primary concern right now is this terrible persistent cough I have.  It’s an intense cough, it makes me puke, I’m sort of surprised I haven’t cracked a rib yet.  Even if it wasn’t COVID times, it draws attention, and it sometimes makes sleeping hard.  We have previously tried some meds to calm the coughing reflex that didn’t really work.  So now, I’ve been referred to a pulmonologist.  I’ll likely have a bronchoscope (camera down the throat) to see if there are any lesions/cancer cells inside the bronchi (tubes of the lungs) that may not be fully visible on CT scan.  If there are, they’ll biopsy so we can retest the cells to see if the cancer has mutated/changed from it’s estrogen positive status, to no longer having those receptors.  Typically, hoping for “triple negative” (no estrogen, no progesterone, no HER2 markers of the tumor) isn’t what you want (it’s the breast cancer with highest mortality) but in this case, it would open additional treatment options besides just IV chemotherapy.  

If there isn’t anything to sample during the scope, I’ll likely do another lung biopsy to try and determine the same thing.  Pending these results, we’ll switch therapies to either an immunotherapy (if triple negative) or an IV chemotherapy (if has stayed the same).

The quiver is running a little low on arrows, but there are still a few there.

The news was disappointing, though maybe not all that surprising, given the progression of my cough over the past few months.  It’s hard to have to wait to initiate a new plan, but gathering additional data first fits with my scientist ways.  

The good thing about a delay in changing tactics is that it won’t interfere with some upcoming planned travel…to AFRICA! Yes, the safari is happening.  Plane tickets are booked.  International wire transfers (a headache and a half) have paid for it, we’re doing this thing.  I’m excited.  Prepare yourselves for an onslaught of travel photos from the trip with adventure buddy Erica, coming to you at the beginning of July.

Over the past few months I’ve done a decent amount of travel as well, taking advantage of the flexibility of sabbatical for some extended trips.  Phoenix with grad school friends, hanging with Mom and Tucci, then up to California to see Bechtel crew for birthdays, badminton, and more and the Idaho fam at the beginning of their spring break vacay.  Minnesota for high school friends, then out to Colorado to see pretty much someone from all stages of life…sister and fam, grad school friends, a high school buddy, and a UD friend.  It’s always been really important to me to put in the work to maintain these relationships, and it’s only more important now.  

Work stayed busy with students finishing theses and an outstanding trip to Philadelphia for a conference, the first in person one for a couple of years.  Meeting up with a former student, hanging with current students, and seeing colleagues “not in a box!” Was really uplifting.  I should take some credit, I know (my therapist and I are working on this, trust me!) for the relationships I’ve built and made and sustained, but there’s still some luck involved, privilege of being in the right place at the right time with the right people, and for that, I am super grateful.  

So rather than a well-laid out chronological trip through the last few months, I’ll just photo dump with some captions, to try to bring the tone of this to a happier place than it started.  

Thanks for the love and support and prayers and good thoughts.  Just got to keep on keepin’ on.

(Post hoc edit…it never fails, I love that when I go through pics to add to these posts, there’s always something that I’m like “oh yeah! That cool thing happened too!”  Gratitude friends, may be the most powerful drug of all.  

February-May photo/good times review…NOT in order and I’m too lazy to change :)

Lots of graduation celebrations!  Congrats seniors!

Oh hey Idaho Crecelii…thanks for coming down to Cali!

Thanks for bringing us lunch, Nat!

Pretty cool when you get to give your former prof an award.  Carissa is awesome.

Just hanging out…Jay has skills.

Demolition is a pretty great way to get out some frustration.  Side note, don’t wear rubber sandals.

Erica won a major award!  Congrats friend!

Oh Mikey…how I love that in an hour at 8 in the morning we can go from your legal savant skills, to afterlife and all topics in between.  I love this friendship.

Lab/UD alum (and now official doc!) showed these current lab/UD students how to have fun in Philly!

Not a bad crew for a semi-impromptu high school reunion at the local brewery (that used to be the Perkins we hung at)

Benefits of zoom meetings…yes, I will take that meeting in Phoenix.

Ok, so this could be a whole post, but yeah, Erica “Reece” is awesome…look up Reese’s University for a good laugh.

I also won a major award!  Great to be back at CSU to accept it, so fun to have Erica along, see the old lab crew, be joined by other colleagues.  The Fort will always hold a special place in my heart and Frank and Jen…you guys are the best.

Students win awards too!  Congrats Abby!

Oh hey munchkin.  Fun to share breakfast with you, even if it was a quick trip!

Thanks for driving up for post-award celebrations friends!  Getting to see you multiple times in a month was quite the treat!

I don’t care if I ruin the flow of the line by taking selfies with students at graduation.  Marshalls be damned!

Girls weekend in Phoenix!  Cat and LJG are awesome.  And they even put up with Tucci! :)

When you remember that your hs senior year prom date now works at your graduate alma mater, you have lunch!  And meet his wife (who happens to work in a similar area!).

 

A Rollercoaster Ride to a Happy Hug

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!

Saturday and Sunday, 12/13 - Distractions?

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.

Guest Post: My COVID Caretakers

 As I said in my last post, I caught the 'vid up in Idaho over the holidays.  Since I ended up spending the better part of a month with the Idaho Crecelii, I thought a guest post was in order.  Please enjoy, courtesy of M&M.

We said goodbye and happy new year to Anne in December 2019 in Glade Park, CO and didn't get to see her for another whole year. Wait, longer than that -- 20 months? Winter in Glade Park 2019 to Summer in Glade Park in 2021. And in between those Dirty Boot reunions, gratefulness was hard to come by. There was just too much. Anne's cancer diagnosis, a pandemic, isolation, violence, ineptitude, dread. So our absence from family last year made New Year 2022 something we could not wait for. We had these Big Plans -- skiing, botanical gardens, Christmas lights, card games, trivia, and a week in the woods with meals around the same table as our people. Snow for days was in the forecast. And who would have thought that, after 20+ months of pandemic living, one of our best gifts would be a bonus week with Anne after she tested positive for COVID on New Year's Day? Stupid. Fucking. Covid.

Anne liked to tease us that she was our “fourth child” while she isolated in our office/guest room/exercise space. But the truth is, we were lucky to be able to care for her. Lucky to witness first-hand how Anne handled getting (Stupid. Fucking.) Covid with grace and calm and perspective. Lucky to overhear her contributing to her work over Zoom meetings. Lucky to absorb her trivia voice all the way down the hall with the door shut. Lucky that I got to vent and complain about all the things I usually get to vent and complain about over text with Anne, but now in person through a glass door with hand waving and eye rolls. Lucky that I got to do one of my most fulfilling things – disinfecting all the spaces. (Lysol helps me to feel in control and I was this way pre-pandemic. It’s fine.) Lucky that our kids got to see that this pandemic has the potential to bring our family closer and that all experiences have something to teach us, and to give us something to be grateful for.

And we just can’t stop feeling grateful about how it all turned out. Grateful that Anne’s symptoms were limited to congestion and a 12-ish hour fever. Grateful for vaccines and boosters. Grateful that our love language (food, complaining, and dancing) were comforting to her. Grateful that even one more week in hell (where we live) will sit in our memories with fondness and not fear or worry. Love you, Anne. Come back to Idaho soon and we'll do more complaining and dancing and eating but with less disinfecting and nose-swabbing.

Welcome 2022!

Happy New Year everyone.  Though this year feels maybe too eerily like the 20-21 transition?  Or, maybe that’s just because COVID is at the top of my mind this first week.  

I tested positive for COVID this past Sunday (at home, after a negative one, confirmed with PCR that evening).  I’m fine.  Doing well.  In fact, biggest symptom (fever) was clear Saturday night already.  I have limited congestion and assume I had the omicron variant as it has stayed in my nose, rather than my lungs (thankfully). 

The biggest impact it has had has been changing my plans to travel home from Idaho where I spent the holiday.  I’ve continued to stay here, in the “fishbowl” as we call it.  In reality, the office has a great view of the mountains, doors with windows to keep me somewhat still involved in the life of the house, and a really positive workstation, even if it’s a little low to the ground….

Seriously though, I can’t thank my Boise family enough for dealing with this.  They’ve been excellent caretakers and cooks, delivering better food than I eat at home.  The young nieces have been good about wearing their masks when needed and putting on the occasional dance performance to keep me entertained.  And, I’ve gotten to witness the impressive ability of my brother and sister-in-law to both do important work, from home, while taking care of their kiddos (and their extra house guests).  Kudos to everyone who has been in a similar situation throughout all of this, it really is remarkable.  

So, you might ask, how did I get it?  Well, not really sure actually.  The family (minus Mom and Grandma Tucci who stayed in AZ) gathered at a rental cabin a few hours north and one other family also has tested positive (total of 4 of the 13 of us) while others have been negative.  We were all responsible in travel and when in public spaces, but not together.  In the end, the tracing doesn’t really matter much and with as easily as omicron is transmitted, I don’t think we’ll ever really know.  I’m just really thankful that I and the others who tested positive have had mild to no symptoms and are doing quite well.  VACCINES DO THEIR JOB PEOPLE!!!  

While together, the fam and I had tons of holiday fun, both here in Boise prior to the trip to the mountains.    I’ve been dancing with my nieces, playing games, spending time in the snow, baking, etc.  The snow up by McCall was some of the best I’ve ever seen…you could see individual flakes, so much stuck to the trees…it was like a winter wonderland!  I’m grateful that I’m able to still be active (though the downhill day really showed my lack of endurance, although who knows if I was maybe already a little sick??).  We did multi-discipline snow activities (sledding, snowman building, snowshoeing, downhill, and Nordic cross country).  I only cursed my lung nodules occasionally, and even gave myself credit that not everyone with stage 4 cancer would be out doing these things!

The Cancer seemed to play far less of a major role this holiday season than last.  Having hair probably helps.  And, honestly, I wasn’t sure if I’d make it to this holiday.  Especially for New Year’s I was a little down, just with the unknown, but think this past year has pleasantly surprised me in how I’ve maintained my ‘normal life’.  Yes, of course I would have liked to find a drug that worked well, but I’m still here!  Still being too loud (for most), still not being capable of pacing myself in activities, still enjoying the kiddos.  I temper my expectations of course (I apologized to my oldest niece for the morbid thought of saying that my New Year’s resolution is to make it to next New Years…but, like, that’s what it is…), but overall am perhaps more hopeful than I was a year ago.  

My family is instrumental in my ability to deal and keeping my spirits high.  They don’t treat me with kid gloves, which I appreciate at.  They may scoff a bit at a morbid thought, but they don’t outwardly criticize or make me feel bad about it.  They talk about the future, they support how I’m going about things.  They are pretty fucking awesome to be honest.  And I’m grateful for getting to spend time with them, and the multiple hoops pretty much all of us jumped through to make it happen.  Love you guys.

My current treatment continues to go well (really glad I ordered another dose sent here to ID given my prolonged stay…) with no real side effects.  Another month or so and we will rescan to see what if any positive impact it is having.  I had labs before I left that showed really stable blood markers, so it’s perhaps really good timing I’m having my bout of COVID when I am not really immunocompromised, or at least not to the extent I have been for most of the past year and a half (it’s been 21 months since my diagnosis…what?!?).  

So we’re still up to our eyeballs in a pandemic, people are impacted by crazy changes in climate (thankful I don’t know of anyone personally to lose their home in the CO fires, but it can damn close to some of my best friends), there’s whacko vocal idiots at every turn, and I still have a terminal disease.  But the last 3 weeks have been restorative and sparked a lot of gratitude for the good things.  

Last year I downloaded the One Second Everyday app.  Essentially you upload a video or photo (usually mine are just Live Photos) from each day.  I don’t really record intentionally, which is why some days are pretty lame and more screenshots and randomness than anything else, but it’s a fun and relatively easy way to look back at the year.  A friend pointed out that my year was basically travel, cat, lab, travel, cat, lab.  It’s pretty true!  And I’m not complaining!  

Here’s to a 2022 of shrinking nodules, better discourse, action to preserve our planet, many more good times with my cat, in the lab, and with people I love!

Overdue Update

I'm a bit behind on what is usually about a post per month to keep folks up to date.  There's a variety of reasons, wanting more information, having too much fun, wanting to watch cheesy Christmas movies (do you prefer the return to the rural small town or the in a European castle romcom?)  Alas, it's a Friday afternoon, I'm still at work, but mentally checked out, killing time until meeting up with some friends for a holiday celebration, so here it goes.

Last time, on tales from Anne's cancer life...

I had gotten the news that the most recent IV chemo treatment had "failed" (rather, may have been working to slow growth, but tumors grew in size and number, which in the oncology world, progression=failure).  I was frustrated (understandably), particularly with the unknown.  Living more week to week than even month to month, waiting on appointments to be made, to have them, to make decisions. So, starting back at the beginning of November, my best recollection of events/thoughts/feelings (thanks to calendars, social media, and pics for the helpful orientation and reminders)...

First week in November:

I made an appointment to go to OSU to consult, get another opinion, check on clinical trials. November 23rd?! WTF. That's a long time to wait. Shit. Do I need to do another round of chemo in interim? Should I go since early October since treatment? Message my doc. He says enjoy the chemo vacation.

Later that same first week of November:

Cool, I guess I can go to Disney for that 10K!  Fun!  Wait, what, 16:00 min/mile time cutoffs?  I can't just walk it?  Damnit.  I guess I'll spend this week 'training' for this?  Man, I'm out of shape.  I better not fail.  I hate failing.  See below...I did not fail.  And, I even gave myself some credit.  Good self-care, Anne.

 

While in Disney...see the start of Christmas decorations and look at the calendar.  Hmmmmmmm...Mom is coming to Dayton for the OSU appointment and Thanksgiving, staying for the Immersive Van Gogh in Columbus Dec 3...there's some time in there to kill, wouldn't it be fun to come back with her and celebrate her 70th at WDW 50th and see Christmas?!?  Good thing she likes my crazy plans!

 

Second Week in November:

Business as usual, trying to not stew about the unknown, collecting data (yay science!), watching terrible basketball games, start planning Barb and Anne's Escape to Disney (side note: my google doc travel itinerary (yes, I'm a dork and make these for pretty much all trips...with links!) wasn't actually called this...Thanksgiving Fun with Mom! was the title used). Yes, I am bad at sabbatical (but a lot of this was very research focused!).  Oh, and fill out new patient forms.  That I had to FAX.  Yes, find a fax machine, dial a number, wait for the 'hook'.  WTF.  I also wrote a paper check this week for the first time since 2016.  Isn't healthcare fun?!

 

Third Week in November:

See above.  Work.  Bad basketball. Planning. Trying to not constantly google treatment options, survival curves, etc. 

 

Fourth Week in November:

Welcome Mom!  Let's stay in Columbus, where you flew into and kill some time before the appointment.  Conservatory, art museum, good food, new shoes for her for lots of upcoming walking.

The OSU Appointment...OSU's The James is one of the better cancer hospitals in the nation.  There's an entire Stefanie Spielman Comprehensive Breast Center (fun fact, when a UD softball player I twice played in a fall tournament named after her...full circle....or something).  It's all fancified, and there's check-ins and you see five people and they offer water and 'emergency snacks' (like, what constitutes an emergency?) and ask if the temperature of the room is ok, and are very kind and polite.  And I get it.  People who go there are scared and it's hard so they want to make it easier and control what they can.  Thing is, that's not my style.  I couldn't give two shits about the temperature of the room unless you tell me that changing it is going to help this fucking cancer go away.  I had to keep reminding myself that this was a 'first appointment' even though I feel like a bit of a cancer pro by now.  No, I don't need a 'chaperone' for sensitive exams. I'm sure some people love this, they eat it up, and it's why they want to be at the big fancy center (very similar vibes to Stanford).  Not me.  Give me my small office, where I can go in, they know me by name, my doc stops by my treatment, I pick up a Rx on the way out.  The fellow goes through the history, I impress my mom with my ability to remember things (making my notes helped, I think I only had to reference once).  I get frustrated when he is able to just take a photo of my genetic results I pull up on my phone and auto-load to my chart....I had to fax you motherfuckers paperwork!  What the hell.  We chat...there's maybe a trial?  He leaves and attending doc comes in.  He starts, as you have to with someone 'new' saying that stage iv disease doesn't have a cure and does lead to people's death.  

I know this.  I say this.  It still sucks to hear it.  And it sucks maybe more to hear it sitting next to your mom.

I can see the frustration on his face when he says:

"we have nothing to offer you".  

I don't qualify for any trials.  There's no secret drug that only academic hospitals use.  He has some thoughts of next steps, they parallel what my doc had said for the most part.  They'll keep my info on file and I should check in periodically.  I'm in the system now, so I can reach out if I need anything.  Speaking of the system, highlights of his notes below....I'm pleasant!!! 

Well, shit.  I thought this might happen, but there's always the glimmer of hope that maybe something was overlooked.  Nope. Send my doc a message...let's start something soon, Happy Thanksgiving, I'm going on vacation and will see you when I'm back.

Mom and I drive to Chicago to visit Grandma Tucci the next day.  We pick up our grocery store Thanksgiving meal.  I still have LOTS of things to be thankful for.  The night gets interesting with a trip to the ER for grandma.  She's mostly fine, other than being 95.  I spend 10:30am-4:30am waiting in my car in the parking lot (thanks COVID restrictions).  How do the homeless survive?  I have blankets, am running my heat every 20 minutes and am still miserable.  We manage to get her to see her eye doc the next day...normal age-related degeneration.  While at the doc, I watch our Dayton Flyers manage to beat top 5 Kansas in their holiday tournament! In Disney! What? They are in the Championship?  Hey mom, I'm switching our flights to earlier, we're going to go to the game, cool, right?  We drive back to Dayton, leaving Grandma doing pretty well.

Last Week of November, Start of December

As shitty and frustrating as the prior week was, this week was equally as great.  Really.  We watched UD take home the championship on Sunday.  

 

Champs!

We spent Monday in Magic Kingdom.  

  

"Magic" Photo with our Disney expert!

Tuesday, Mom's childhood friends that live in FL joined us and we saw a super cool Disney collab with Cirque du Soleil show and went to the after hours Christmas party.   

  

Snowing on Main Street USA!

Wednesday at Hollywood Studios and Epcot.  

 

Piloting the Millennium Falcon.

We rode almost every attraction we wanted to (duuuuuude, Rise of the Resistance is pretty damn sweet, even if you're not a crazy Star Wars fan and I may have to save my pennies for the immersive hotel experience), ate delicious foods, and had a great time.  

 

Eating around the world!

I did travel planner duties well.  It was awesome. Thanks mom.  I think we both needed that.

 

We came home, decorated for Christmas, I went to the doc for my monthly hormone suppression injection and confirmed the new treatment plan (see below), picked up some drugs and my steroid mouthwash.  Saturday, went the Van Gogh thing (NOT worth $50 and 90 min drive...though I found out there are 2 immersive things, maybe the other one is better?  Or maybe they are just good marketers?).  Either way, ended up Mom flew out a couple days early to head back to Chicago and pick Tucci up to bring back to AZ with her (a little earlier than she had planned). 

Which brings us up to present day and

Second Week in December:
Apparently I was a little distracted when talking with CVS Specialty in the middle of Hollywood Studies and forgot to add my apartment number to my address.  This led to a bit of excitement the  Friday we  were back and tried to track down my new drugs (pre insurance cost of ~$15000 for a 28 day supply).  They arrived Monday, safe and sound, and so the new regimen begins.

 

Good things come in small/expensive packages??

The main 'new' thing is a drug Everolimus (Affinitor).  It's targeted therapy, meaning it inhibits a specific part of the pathway in how cells work.  It's given in combination with another drug (Letrozole, aka Femara, an aromatase inhibitor) that is similar to the drug I was on for the 5 years I was in remission (exemestane, aromasin), that stops the body from making estrogen from other substances (I'm already on hormone suppression to limit estrogen produced by ovaries and such...yay chemical menopause!  Though I did have the thought it bed the other night that I probably have saved some money not buying any tampons for the last 6 years).  In a way, it's going 'backwards' in the progression of treatment, but since the chemotherapy drugs haven't been working as well as we'd like, it's worth trying this approach (hormone + 'enhancement') that has been promising in some trials, patients, etc.  It also gives my bone marrow a bit of a break from the overall chemical poison of the chemos I've been on.  Predictable side effects should be mild, if any (mouth sores, hence prophylactic steroid mouthwash rinses, fatigue, GI distress, etc).  There are some slightly more concerns changes that can happen in blood components like glucose/sugar regulation and lipids/cholesterol, but all things we will monitor and can be managed.  It's a couple pills a day, so very accommodating for scheduling, traveling, etc.  A few days in, and so far, so good.  I go in next week for blood work, check-in with doc etc.

So yeah, that's the update.  New drug.  Will check in a few months.  The year is winding down, which I think brings reflection for everyone.  I just checked the 'count up' clock I have of my 'metaviving' time (aka since stage iv diagnosis).  20 months, 2 weeks, 2 days.  It's been a bit of a strange past 12 months, a strange past 20 months, but I'm still here.  

As I put up my tree (I missed doing that last year when I was out in California!) and unpacked all my ornaments, it was a great trip down memory lane.  I started collection ornaments, I don't really remember when.  Some time in grad school.  It became my travel souvenir...generally small, cheap, portable.  It was nice to add a few new ones this year compared to COVID restricted, minimal travel, 2020.   Lots of fun times with beautiful people in beautiful places...my fave.

Consider this my Holiday Card to you and yours...

This holiday season, and always....

May more days than not be full of  joy, smiles and fun, 

May you feel the support and love of others as I do each day,  

Well wishes and my gratitude for what I have (hair! and a haircut since I know I'll keep it at least 3 more months!) and who I have it with (I see you Riley, hiding under that tree!).  

 

Happy Holidays friends!

Love, Anne

October’s Good, Bad, and Ugly

Happy Fall Y’All!  Apologies for the basic white girl opening.  But ‘tis the season! (Is there a name for mixing holiday catchphrases?!).  I was telling my students in Journal Club the other day how I bought a stencil to make a craft that says “Fall is my second favorite four letter F word”.  Hey,  I never said I was professional all the time, right?  Well, I never made the craft, as my craft eyes are often bigger than my stomach…hands?  Ok, time to drop the idiom-speak.  Anywho, it’s fall, which I like the cooler temps, the pretty trees…until it turns into Midwest winter, which is mostly just grey and brown.  Grey skies.  Brown trees.  I’ll miss that color.  As the month comes to a close, I’ll take a break from scrolling FB and seeing Halloween costumes to provide a bit of an update.

The Good

The Good of October was mostly in the early parts, as I escaped to California for a couple of weeks.  While I’m on sabbatical, I’m still ‘working’, mostly on research and then on some selected service-related responsibilities that are important to me.  My teaching and advising has been put on pause, which while I miss my students and those connections, is pretty great, and generates a lot less email.  So with some things still being remote, I figured I could afford to hop a few time zones over and visit family, celebrate birthdays, and otherwise enjoy a bit of an escape.

After I arrived, I remembered why time zones suck when I had a 5 am meeting the next morning, but despite a couple early wake ups, it was a grand time.  My sister and fam are so generous, my mom was there for a bit, my brother-in-laws parents, the weather was pretty great, the accommodations stellar, and even got to meet up with some FD friends that weren’t too far away.  Add in my niece’s dominating in doubles on the tennis court, birthday celebrations, bike rides, fun food and it was definitely a good time.

 

I came back to a Riley Cat that missed me (though she was VERY well taken care of by her new friends that checked on her), research projects ready to roll, and much cheaper gas prices.  I generally go to the office most days, but have some flexibility as well.  I may still be “bad at sabbatical” as my sister told me (and I agree with), but I’m learning to find a better balance.

The Bad

One of the things I came home to was my 3-mo scans, checking in on the latest chemo treatment (Doxil, aka doxorubicin/red devil, but coated so it’s a bit easier to tolerate) that I’ve been getting.  My new place is near a large hospital in my preferred network, so scans got scheduled there, both a bone scan and CT.  For the nuclear bone scans, you have to get injected with the radioactive dye and wait a few hours, then return for that scan.  They were able to complete my CT scan when I was there for the injection, before I’d head back.  In the in between time, rather than work, I watched TV back at the house, as I was having a normal level of scanxiety that I’ve grown pretty accustomed to.  While laying on the bone scan table (they wrap you up kinda like a burrito, and while some might find it claustrophobic, I actually really like it and almost fell asleep), I thought to myself, “maybe the CT will result while I’m being scanned”.  The tech finished, I grabbed my phone and saw the notification that a new result had posted to MyChart.  

Wanting to maintain some level of privacy, I resisted the urge to immediately check it and waited till the car.

Fuck.  Fuckity fuck.  God damnit.  Text the family.  Text a few friends.  Wait till Mom has likely read it and then call her. I wouldn’t be meeting with my doc until Friday (this was on Tuesday), so some time to process.

Thanks Mom, for reminding me, it’s not that it isn’t working at all (if I wasn’t poisoning my body for the past year, who knows where I’d be today!) just not as well as we would like.  Stable would be sufficient.  Regression is preferred.  But progression?!  In size AND number.  Fuck.

I threw a bit of a pity party for myself the rest of the day.  Wednesday was a busy work day, which was probably good to keep me occupied.  Thursday I had to take my car in for maintenance and spent the morning on clinicaltrials.gov.  I hate to say the phrase “I did my own research” in These Times (TM), but I did.  I searched by keyword (~230), I screened by title/intervention (~60), I dove into inclusion/exclusion criteria (6).  I looked at what standard treatments there might be.  I reviewed what I’ve already done (it’s a lot so it’s easy to forget!).  

I made is less personal, more clinical.  I coped, in the way that I do.  Well, if my initial “I’ll have 3 good years” was correct, I’m about on that track right now!  I sent a couple friends the actual pictures…they’re visual like me.  I had asked for my scans last time because of this..I wanted to see these fuckers.

That’s July, so more and bigger (the light spots, these are one slice of the CT) since then.  They are still relatively small, hence why I’m not symptomatic.  The bone scan resulted on Thursday…while the sternum is stable, there’s maybe a new small spot on a rib.  Bigger fish to fry.  I had a well-timed therapy appointment Thursday afternoon where I could basically review what I have here.

A few days to sit with it till I would see my doc, make a plan…which brings us to…

The Ugly

The Ugly is the unknown.  The Ugly is a plan in progress, but no real answers.  The Ugly is seeing on your doc’s face, genuine frustration.  The Ugly is wishing there was a next best step.  The Ugly is the look from the chemo nurse when you say you’re not getting treatment today and she’s smart enough to know it’s because it’s not working.

I arrived at the appointment and asked if I needed to get blood drawn, if they should put an IV in, because I figured we’d cancel treatment.  As the medical assistant relayed this to the doc, he replied “oh, so she already knows”.  Of course I do.  So we got to chat, chat about what we’ve done, what could be next.  There’s a few remaining chemo lines that could be tried as single agents (the ones I had looked into, noted as next steps).  We could rebiopsy but doesn’t seem necessary right now.  before the appointment I had decided I wanted to get referred up to OSUs Cancer Center….remember those 6 trials I might qualify for? One is at OSU.  

A trial isn’t necessarily the answer, but since the regular big guns aren’t working well enough, the more targeted/specific drugs that are in development may be the way to go.  A friend who had consulted with OSU had good things to say.  My doc, as always, was supportive.  He understood why I’d rather do that than Indiana (a 2.5 hr round trip vs 4 would be nice), but was still going to call and consult with the Indiana doc (will call me back next week). 

 I’ll try to have a plan by Thanksgiving, figure out what and where I want to do the next thing.  A break for a bit (though not from the continued monthly hormone treatment and injection to support my bones).  I’m not looking forward to the appointments, the new docs, paperwork, processes etc.  Should be easier since they are on the same electronic medical record system, but still takes some work.  And yet, I’m grateful I have a super flexible schedule right now, good insurance coverage (just did open enrollment, yes I will be maxing out my FSA again in anticipation of probably reaching my max out of pocket and that gets me a good chunk of the way there), the capacity to have major med centers relatively close, reliable transportation, and that I’m feeling well enough to do these things.  

After this kind of news, people ask how I’m doing.  It’s such a tough question.  I’m fine?  I’m sad? I’m pissed?  I’m glad I can understand all this shit?  I’m grateful?  I don’t know.  I just sort of am.  I know I shouldn’t eat my feelings, and yet I do.  I take time to veg, but I uphold my responsibilities.  I can distract myself with work.  I cuddle my cat.  I am continuing on.  Continuing to “fight” in as much as fighting means letting the years of science and millions of dollars of research hopefully extend the good days.  I am glad October and all the breast cancer attention is almost over.  

I wish I knew what the future would hold. When the first appointment will be, what the treatment will be, how will I feel, how will it affect me? The unknown is the ugly.  So rather than even planning 3 months ahead right now I’m basically planning 3 days.  That trip to Florida to do a Disney run and visit a good friend that’s scheduled next week?  Sure…for now…. 

I’ll post updates as I can, but may wait till there’s actually something to say, till I know a bit more.  Till then, to end on a less serious-note, in my vegging and pity partying I’ve watched a lot of TV lately, some recommendations/comments, beyond Squid Game (which was fine)….

Salvage Kings - Canadian demolition company that salvages stuff and sells it.  Why am I so intrigued by watching Canadian men work?! (Remember Big Timber?!).  Netflix.

Dopesick - Hulu original.  Tough to watch, especially coming from a place the opioid epidemic hit hard.  But well done…probably a good thing it comes out weekly so you can’t binge all at once.

Babysitter’s Club - Netflix.  I wasn’t a big fan of the books (Boxcar children was my jam and I was too much of a tomboy to get into these).  This show is great.  Progressive.  Clean.  Pure.  Great escapism.  

Clickbait - Netflix.  Maybe it’s because I never watch Entourage, but I can’t see Adrian whatshisface and not just constantly picture him with Sabrina the Teenage Witch née Clarissa Explains it All, in Drive Me Crazy.  God the 2000s were the golden age of terrible teenage movies.  (Speaking of, the He’s All That reboot, eh, it was fine).

Baking Impossible - Netflix.  This one we actually found and watched in Cali.  Good stuff, competition show of bakers and engineers…except the phrase “bakineer” is lame. 

The Movies that Made Us - Netflix.  I like the behind the scenes look, even if it generally doesn’t include the main star.  Fun facts about Coming to America?  Pretty Woman?  Back to the Future?  Yes please.

And there’s a new season of Below Deck! It’s the little things you guys…