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