The Red Accordion Diaries

Kentucky musician who travels, eats, parents, writes, fights cancer, etc.

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I have been at a loss as what to write for ages now. It's not writers' block; I've been able to make some progress on my books and songs. I just feel like my blog is boring, that no one cares how I'm doing, or that even if they do care, I've got nothing new to report. 

That's probably the biggest issue here: I'm in limbo. I've nothing new to report. I know you care. You wouldn't be reading if you didn't. But I'm still half-healed, with three more surgeries before I'm whole again.

I've decided to go ahead with breast reconstruction, a deeply personal decision that I still wrestle with. I feel like I should be brave enough to "Go Flat!" It's a movement heard around the world, and it's one that I support.

Just updating for people following along, and for future breast-cancer patients who wonder how this whole process goes. 

I'm doing okay. I'm still lop-sided. For y'all just catching up, I had a bilateral mastectomy in October. At that time they placed tissue expanders on my chest -- basically spacers for future implants. The tissue expanders are filled with a saline solution bit by bit to stretch the skin over a few months before having the final phase of reconstruction. Unfortunately there is a shockingly high rate of infection (10-15%), and I was one of those unfortunates. 

This means that I currently have a left breast that is a rounded tissue expander, just awaiting to be swapped out for an implant. But my right "breast" has been removed completely, including the tissue expander, and I was sewed up flat -- concave even. 


A Mastectomy during a Pandemic

I am writing this because I didn’t find helpful resources out there about what to expect when getting a mastectomy during a pandemic. There are a lot of great blogs about how friends can help you, what your partner can do during surgery, etc, but none that explain cancer surgery during COVID-19.


I had my mastectomy during the beginning of the third surge of coronavirus -- in October 2020. Things were not as locked-down as I would have liked, particularly when it came to other patients. Please, people, if you are going to a doctor’s appointment, you have GOT to be considerate of other people. 


Someone in that waiting room is immuno-compromised. Someone in that waiting room has recently gotten a cancer diagnosis. Someone in that waiting room is terrified for their life. The least you can do is wear a mask properly, not bring your whole family to your appointment, and not sit down right next to a stranger.

Today's Guest Blog (Part 1 of 2) is by actor-writer-reader-musician-cinephile Gregory Maupin. If you have ever seen Kentucky's Shakespeare in the Park, then you have seen Greg and his equally talented partner, Abigail Bailey Maupin, perform. As a duo, they are known as RANNYGAZOO and are just an astounding package of wit and wonder. I love to see what they are into and upto. (I am also a supporter of their Patreon page: you could be too! Click here to see what magic they've offered.)


Quick update on me: Today is my first-ever colonoscopy prep! I'm oddly excited about it: alone time is precious. The kids are getting whatever screen time they want, and I am going to hang out in the bathtub with a book or laptop and hope I can write a book or a song or maybe just a few blogs... 

GIFT GUIDE: what to buy Breast Cancer patients. 

This year was bad enough, but now your friend (or you!) is battling cancer too?! It's just dumb at this point. When you are in the midst of cancer treatment, there's not a lot that can make you feel better. But there are things that can make your days more comfortable, and that's what I'm here to suggest.

I'm feeling okay. I want to get back to creating. Writing and producing books and music. My brain is still fogged from anesthesia -- I've had three surgeries since summer -- which makes it difficult to focus longer than thirty seconds at a time. I do that thing where I re-read the same paragraph five times in a row before giving up or slowly trucking through.

I was 50,000 words into writing a memoir about the Sandwich Generation when I was diagnosed with breast cancer. Now I haven't even looked at that memoir because I'm unclear whether I need to trash it all or simply add a third act. 

Grief is still a cloud that follows me around. We moved into my parents' home very slowly, so things like their refrigerator magnets and photographs are decorating our space. Most of the time it's fine, but yesterday I broke down while opening the fridge: a photo of my parents with Motorcycle Joe just did me in. 

It's a photo of them the way I will remember them. The mind chooses an age, and it's not always the age they die. This is my parents, grinning and glowing. Mom is between cancers, but her hair is the glorious crown of ringlets I always knew her with. Dad's bright blue eyes are laughing. Both of my parents are just oozing joy and pride. I saw it and smiled, and then I sobbed because my children didn't get a chance to know their grandparents. 

Grief. It's that ball in the box metaphor, and damn if it didn't just hit the grief button hard. 

Anyway. Basic stuff: how am I?

I'm trying to heal. I'm on my fourth round of antibiotics, and fighting this dumb infection. I've had complications from the past two surgeries, and I'm really frustrating with my plastic surgeon, who seems to not give a crap about me. I am looking to switch surgeons, but I can't even get a second opinion consult with anyone until December 23. It's hard to be rosy-eyed when even your cancer doctors don't care about you. 

The meal train was amazing, and thank you all so much for the gift cards. They've allowed us to order meals, since I'm still unable to cook or do the washing-up. David has been working 12-14 hour days and also doing all the dishes and trying to finish the kitchen renovation that was put on hold because we did demolition in March. I'm hoping to have a kitchen countertop by Valentine's Day, but don't want to put any pressure on poor David. 

I'm excited to have a pantry though. Here's David's handiwork. I'm not even able to paint, so David did it all himself. It used to have an oven and a pile of trash and boots and snacks. Here it is empty and then with a coat of paint and new vinyl floor:




This feels like it'll bring some sense of order to our chaotic life.

***
I'm grateful to you. I'm grateful for my Patreon community: the people who toss a dollar a month (or five!) to me, which allows me to hire others, to donate money to others, to support my family and my art. I'm grateful beyond measure for the GoFundMe that Jeska started that allowed me to pay my medical bills in a year that I lost my job and got cancer. Thank you for giving me the peace of mind. Losing my job was hard enough, but getting cancer on top of that was ridiculous. Thank you, my beautiful friends. 

LINKS:
How to Join my Patreon community (become a patron of ART!). 
Tip Jars & other articles of interest.


How am I? I'm okay. I'm 2.5 weeks post-emergency-surgery. It was rushed and a not-beautiful job of being sewn up flat, with extra skin squishing around the stitches here and there. It's evening out a bit, but it's not the pretty flat-job that the GoFlat Movement Instagrammers receive. 

I am slowly getting my energy back, but most movements are still completely overwhelming. Fun fact: I've been to at least a dozen appointments since my mastectomy and not a single one has suggested physical therapy. 

I'm grateful to have such a huge community of friends because one of them happens to run a Mastectomy PT clinic. Eventually I'll go see her, but right now I'm not interested in risking the COVID numbers. 

Mostly, I continue to be enraged by America'a healthcare system and am upset that someone with fewer resources would have an even WORSE experience. 

I shouldn't be surprised. It was awful for my mother. It was awful for my father. It's been awful for me. The only time I've been pleased was when I lived in a country with universal health care. Either it was just that they attitude is totally different and people actually care about their neighbors, or it simply behoved the medical staff to take care of their patients (because it was cheaper). 

Whatever the reason, preventive care, follow ups, home health visits and mental health checks were prevalent when I lived in Scotland. In America it's the Wild West, and you'd better have written a dissertation on How To Be a Patient with the Knowledge of a Doctor if you want to know exactly how to get what you need.

I wonder about switching plastic surgeons, but I'm also not sure that would solve the problem. Technically, I like the doctor, but he only spends about 90 seconds with me each visit and always seems to be backing out the door the second he sets foot in. I can appreciate that during COVID-times, but I also think if he'd spent more time with me he would have noticed the infection the week before when I first asked if something was wrong with it. Instead I got a, "No, it looks fine," and out the door. I'm not sure if anyone else would be better though, particularly in during a pandemic.

The gatekeepers are really difficult to get through too. This surgeon is at University/Brown Cancer, and while they have the best researchers/scientists/doctors, their administrative staff is ... difficult. My dad had a nightmare of a time getting appointments there (and when he did, the appointments were literally hours behind schedule). I've had the same issue. Long waits for short visits and dismissive tones, followed by absurd medical bills. (My dad just got a bill for a biopsy performed almost two years ago! He died in June 2019. FACE PALM.)

I was supposed to get my stitches out this morning, but it appears that the staff never made the follow-up appointment for me. (Any nurses reading this want to make a house call?!)

Anyway: that's how I'm doing.

-I have one fake breast that's about a B-cup.
-I have one flat no-breast that is kinda concave and loaded with scar tissue.
-I am so so so happy that the only medicinal treatment I need is ten years on Tamoxifen. 
-I am still exhausted most of the time, but see a glimmer of hope in eventually being able to walk up the stairs without my pulse racing.

And how is the family doing?

-My boys (4&8) are stressed and anxiety-ridden. I wish they had my parents in their lives to distract, send gifts, run to the zoo, anything.
-They are doing well in "school," which mostly just involves lots of conversation and googling and coloring with me in bed. They are doing Prodigy for math, which they love ... it also tells me that my 4-year-old is almost finished with 1st grade math and that my 8-year-old is in middle school. 
-I'm beyond grateful that they are so clever. It reinforces the idea that they are not missing anything in school, aside from social interaction. Which no one is getting this year, so all kids will be equally messed-up from that I suppose.
-David is working his ass off between 12-hour-days on calls solving innovative strategy stuff or whatever it is he does and the rest of his waking hours spent doing my dishes and laundry and fixing up the kitchen renovation that we were in the middle of when pandemic struck. One of these days we're going to actually have a kitchen counter, and I'll actually be able to chop a vegetable! #AGirlCanDream

What to look forward to from me... because I don't know how else to pay it forward right now than to write, share stories, provide something useful.

- Gift Guide for people undergoing surgeries/mastectomies!
- Questions to ask when you've been diagnosed with Breast Cancer
- How to navigate the healthcare system (once i figure this out ha ha!)

Ways to Support Me:
Tip Jars & more at https://linktr.ee/brigidkaelin
Patreon Commnity: https://www.patreon.com/brigidkaelin
Sharing and Liking/Following and subscribing is free and helpful.

Breast Cancer Journey captain's log five million:

I don't love the term "cancer journey," mostly because it feels very instagrammy and flippant. Therapists must have coined the term in hopes of reframing things for the victims. It's a journey. It's not something happening to you. It's part of your life. Instead of victims, we transform into travelers, having stranger adventures than a healthy/normal human. 

I don't like the idea of re-framing. Therapy is helpful, but it feels like it's just tricking your brain into being okay with things. I don't want to be okay with things. I want to revolt, take to the streets, cut out cancer with a guillotine. I suppose that's not healthy? And it's healthier to trick your brain into thinking you're on some sort of adventure? I really don't find that useful, but I'll keep using the hashtag #cancerjourney because I don't know what else to call it.

Sometimes I think I'm too literal, a problem that comes with the spectrum I live on.

Anyway: how am I?

I'm okay. I'm one of a handful of women on the planet who currently has one completely sewn-flat "breast" and one fake breast. I hate it. My sensory-overload is on high alert right now and everything about my body feels foreign. It is messing with my brain and I don't like it. 

I'm really tired of being "an interesting case." My mom was also an "interesting case." So was my dad. It's not where you want to be when you are talking cancer.

Turning to gratitude ... The meal deliveries have been amazing. Beyond amazing. I thank all of you who have sent dollars to help us buy delivery or who have sent meals. The mental load of "what's for breakfast/lunch/dinner/snack" is more than any of us can handle right now. Your kindness has kept me in bed, where I am supposed to be.

Bedrest doesn't suit me. I don't understand how I can be trying to get my strength back when I am forced to sit all day long. 

I'm fed up with the healthcare system in America, where doctors cannot spend more than 90 seconds with you. I'm convinced that's why I had such dramatic surgery last week. If the doctors (who have seen me at least twice a week since my original mastectomy) had spend more time with me, they would have noticed the raging infection before it had spread so viciously. 

But then, of course, they wouldn't get to charge $100k+ for emergency surgery. And another enormous bill for the 2+ further surgeries I will need...

Anger at the system doesn't help fix my problems, but talking about it is important. I don't want to reframe this. I want to point out the problem and hope that we can make change. I don't want other people to deal with the same bullshit I've had to deal with.

Reframing. It's such a trick. It hides reality, which means we can't make actual change.

Reframing supports the status quo. I don't like the status quo in America.

Our healthcare system is designed to kill us, unless we're incredibly wealthy or lucky, and that is not right. That is not human. That is not kind, nor caring for thy neighbor, nor civil. 

We must do better.

Gratitude. Reframing. Tricking your brain. I remain grateful. I don't see that gratitude is anathema to realism. We can be angry and grateful at the same time. But if all we are is gracious, we will never be motivated to change the systems that are trying to kill us. 

I'm desperate to create. Creation from bed-rest is hard.  All the surgeries have rendered my arms/hands not nearly as dextrous as they were a few months ago. I worry I'll never be able to play piano like I know I can. I cannot write anything with either hand for more than thirty seconds before it's illegible. It's upsetting. 

I've finally weaned off the neurological medications doctors put me on when I kept telling them something was wrong and they just assumed I was anxiety-ridden and depressed. I was not. My head is clearer now, and I feel better for it. I'm far too aware that my time is limited, and I have so much more to create. 

Here's a quick Christmas tune I did last week when I had five minutes of energy.


I'm feeling more and more bursts of energy, so look out world. My novel is coming. My memoir is coming. My Christmas album is coming. My ... well, how's this for reframing: Forced bedrest means time to write all these things. Write, write, write. Once my hands are able to work properly again, I'll put blogs like these back in my journal where they belong. And I'll go back to posting funny anecdotes and budget travel itineraries.

I'm also staying away from Facebook, so consider joining me on Patreon. I love that community, and it's where I am free to post my creations, drafts, wild hairs and more.
Consider joining at the lowest tiers (you can always choose your own tiers) and supporting five creators. You'll feel great about yourself. It doesn't have to be me; there are loads of amazing people on Patreon.
www.patreon.com/brigidkaelin is my site
Other cool links that you may be interested in.

Thank you all for being amazing.


So much for being a Bad-Christmas-Movie Blogger. Anesthesia steals my focus, and I just don't have the energy to watch The Princess Switch: Switched Again! 

To catch up, here's what I did watch, before I stopped the pain pills and couldn't focus anymore.

  • The Princess Switch: 

    This was my first attempt at watching a bad movie with my kids. Angus doesn't really care for movies, so about halfway through he jumped ship to go read or color or slice imaginary fruit something. I don't know what he was doing because I was too involved in a Prince/Pauper/Parent-Trap kind of story. I LOVE this plotline. The script was really cheesy. There was a Baking Contest. There were two love stories. There was a cheeky kid, and there was a tiara. Solid. 

    I do think that skipping right to the wedding at the end means a huge missed opportunity for another whole film. (The film when the wedding is planned, but something threatens to stop the ceremony!)

    Graham (8) really loved it, and that was super fun. It's different from watching it with David though because I don't want to make fun of something that Graham genuinely likes. 


  • A Princess for Christmas



    FIRST THINGS FIRST: This movie stars Sam Heughan.** I did not know this until his character appeared, and I let out a shriek that made David come rushing to make sure I was okay. 
    Honestly, I don't remember much about the movie because Sam's twinkly eyes and Scottish accent are very distracting. 

    ** Sam Heughan has a fabulous new book out called Clanlands. It's a memoir about traveling all around Scotland and sampling whisky and touring battlefields and having grand adventures. I highly recommend it as a COVID escape read. Or a Christmas gift for a friend who loves Outlander or Scotland or just a light read. Buy it here.


  • A Christmas Inheritance

    I wanted to like/hate this one more. I think it was maybe trying to be actually good, ergo it didn't land. I think if you're gonna make a Christmas romance, you need to go big. Traveling to a small town and falling in love with just a regular guy is not the sweeping love story we need in COVID2020. At least make the "regular guy," like, turn out to be an heir to a small Dukedom. 
Okay, now for updates with me #cancercrap:

My emergency surgery was a week ago exactly. I'm home. I'm okay. I think they got all the infection? I'm still on antibiotics. They really butchered my right breast, which is not just gone, but concave and sewed up like a 4-year-old was trying to cross-stitch a jack-o-lantern on my chest. I have no idea what will happen next (though i'll have to heal completely before re-starting the dumb reconstruction process) because:

Not a single person from the hospital or surgeon's office has called to check in on me.

Yes, I'm aware that it's COVID and health workers are really overworked and stressed at the moment. This is also plastic surgery, which is rarely emergent, and I would think someone would call to check on me? 

I borrowed a blood pressure cuff from my neighbor, and tracked dangerously low blood pressure the two days after surgery. HUGE thanks to a cardiologist friend of mine for talking to me on a Friday night about when to go to the ER. She helped me avoid the ER by suggesting i eat saltines and drink gatorade until my BP got a little higher. I'm angry that someone less in tune with her body or someone who didn't have a BP cuff could have just died in their sleep because they were sent home from the hospital too soon. I'm so grateful for my neighbor with the blood pressure cuff and oximeter and for my cardiologist friend who saved my life. 

I was super dehydrated since my surgery was so late in the afternoon. I hadn't eaten anything in 24 hours, nor had water, and that likely contributed to my blood pressure. I could have used some IV fluids, but we don't keep IVs around the house.

Anyway: I'm pretty angry about the infection. No one had noticed it before, even though I saw 2 doctors a week for a month. I'd even said that I thought it was a little warm to the touch, and they, who spent maybe 90 seconds at most with me, said it was fine. Then, next thing I know, they are aspirating a huge abscess. I'll post a photo eventually, but for now I won't even let my husband see it. It's pretty horrific looking -- way worse than the original mastectomy. 

Cancer updates are here. Other stuff and ways to support are here.

***
Sometimes I post Amazon Affiliate links in this blog to things I love because it's nice to get a few pennies every so often. 


Quick cancer update: I’m back in bed. They had to completely take out my right tissue expander, cut off infected skin and sew me up flat. Three days ago I felt fine and was only 3 weeks out from getting my implants and being completely finished with treatment (other than many years on tamoxifen). Now I have to:

1) heal from this surgery for 12 weeks  

2) have another surgery to put in tissue expander in (so maybe February?)

3) wait another 8-10 weeks 

4) swap out the tissue expanders for implants

YES. I know it could be worse. I do. But allow me my feelings for now, okay? It sucks. I want my mom. I want my dad. I’m so tired of being in bed and not being able to go on leaf collection walks with my kids.

Instead: let’s talk Christmas movies.

I call them all “Hallmark movies,” but I don’t think I’ve ever actually seen a Hallmark one. Don’t those always revolve around angels and churchy things? I don’t know how one sees a Hallmark movie without the Hallmark channel, which we don’t have. BUT I do have Netflix, and there are plenty of movies whose thumbnails are women in red dresses hugging a man in a green sweater. That’s the same genre, right?

I’ll be watching many of these films while on bed rest, since I’m not able to focus enough to read or write. Join me in my Terrible Christmas Movie Club?

Last night’s fine, fine film:

A Christmas Prince. Or is it THE Christmas Prince? Hard to say. Not important. What IS important is that this film is set both in New York City during snowfall and also in a made-up-Kingdom ending in the suffix “via.” This is fairly common in genres I like. Aldovia, Genovia, Belgravia, etc. If you’re working on your screenplay, consider Brigidovia. Or Kaelinovia. No, nevermind, those are terrible. Instead consider taking a disease, chopping off the last half and swapping it for ‘-ovia’ or ‘-avia.’ As in Bubovia, Scurvia, Consumptovia, Syphilavia, you’re welcome for the setting of your next unexpected princess tale.

I watched A Christmas Prince in 2017 (and the sequels ...), but started fresh last night to watch terrible movies with my husband. David is new to this genre. He is shockingly good at anticipating the plot lines, but that’s probably because he’s a legit genius, according to his GMAT scores. I mean who saw that adoption plot line coming?? Not only David, but also he knew the acorn was the secret to the throne.  

This movie is perfect for not thinking or caring about anything at all and instead getting swept away into a dumb world of snow and blogging. Warning: you MUST suspend your disbelief. It’s like taking a ghost tour of an ancient city; it’s only fun if you actively decide to believe in ghosts. Shut out your hating, click on the electric fireplace, and settle in with a weighted blanket. Winter is coming.

Checklist of imagery that makes this movie solid:

- mighty horses trotting through snowy Romanian mountains

- a saucy child character

- a woman with a decidedly low-paying job whose company decides to fly her to Europe

- a makeover

- a dead mom

- a dead dad

- lies that threaten to ruin the main romantic plot

- a proposal that comes way before it should

(I need to make bingo cards, don’t I!?)

What should I watch next?

*****************************

All kinds of links, from cancer updates to tip jars, are here. Support artists if you can.

Selfie from when I was
trying to sit with the
present and be mindful.

I had written a whole update for you with good news, but after a doctor appointment this morning, it turns out I have good news *and* bad news. The good news outweighs the bad news, but it’s still bumming me out. I was trying so hard to celebrate my “win” yesterday when doctors told me the GOOD news: I don’t need chemo!

I saw an APRN in oncology yesterday (my oncologist was overbooked), who told me that the Oncotype Dx score was 0. Zero. 


A score under 15 typically means that the chemo risks outweigh the benefits. It’s a combination of my age (42) and my tumor size and its genetic makeup. But all that is important here is that, because I had the mastectomy, I don’t need radiation. And because they got clear margins during surgery and the oncotype score was low, chemo would not be beneficial. I’m trying to celebrate that win, but I’m frustrated because: I found out an hour ago that I have to have emergency surgery this afternoon.


I’ve had a hardened outlook, where my instincts see, “Okay, this is good, but what else is going on?” Friends have advised me to celebrate the wins and not think about the future. So I tried to do that, even though I had a nagging feeling. Grrrr. 


I went to the reconstruction surgeon this morning, who has now put me on the schedule for the OR for TODAY to try to clean up an infection. Yes, yes, I know, I know, those of you who told me not to get reconstruction: I see you shaking your heads now and mumbling, “I told you so.” But the past is past, and I’m doing what I can to survive and feel good about myself.

I’m so grateful for you all. Your donations and kind words have kept me going. They have also given me the peace of mind that I’m able to feed my family, or order a craft kit for the boys so they aren’t just tied to screens on days I’m feeling awful -- and still be able to pay my medical bills. 


I’m angry that I have to go back in the OR again, in just a couple of hours. Anesthesia does not sit well with me. I’m angry that this sets me back at least six weeks in the recovery progress. I don’t want to take pain meds, and I don’t want to be bedridden. I was *just* starting to feel better and our amazing meal train ended. Today was supposed to be my first day meal planning and cooking again. Instead I’m going to the hospital and I just want my mom.

Grrrrr. Here is you getting all my emotion today because I was all set to write purely a happy update! This is my problem with focusing on good news. I know the science, and the philosophy of worry, but it also just makes it all worse when you don’t prepare yourself for bad news. Anyway, it’s not the worst news. I’d rather the reconstruction go wrong than the cancer. Blog: 15 things you need when recovering from a mastectomy


***** Ways to support me and my family:

Venmo: @BrigidKaelin (It feels gauche to post this, but during a pandemic, there aren't many other ways to help. So helping with groceries or takeout or hire a babysitter who hasn't been anywhere is helpful. Thank you times a thousand to all who have helped out so much already!)

Paypal: brigidkaelin at gmail dot com Other links/updates: https://linktr.ee/brigidkaelin


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ABOUT ME

Brigid Kaelin is a Kentucky musician, speaker, and writer. Her new album is streaming everywhere, and she’s publishing her first memoir in 2022.

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POPULAR POSTS

  • Breast cancer updates: life between surgeries
  • Surgery updates; tissue expanders explained and all that jazz
  • What to expect on the day of your mastectomy
  • 15 Items You Need When Recovering from a Mastectomy
  • A Scottish family recipe: The Clootie Dumpling!
  • Guide to being a Breast Cancer Patient.
  • Cancer updates: post-mastectomy, post emergency tissue-expander removal, post-infection, mid-pandemic.
  • Family films to stream for the long winter's days. Part One: HBO Max.
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