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. 

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:

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 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.

Thank you all for being amazing.

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.

Social media is a beast on your mental health. No judgment though. I mean, you probably got to this post by being on social media. (If you're one of the ones who subscribes by email: you are brilliant. I need to take that approach to blogs I like instead of reloading social pages hoping for new content.)

I did okay with being offline this week, and I'm happier for it. I deleted everything but Instagram and Pinterest from my phone. I like those sites because I only follow 1) my real-life friends and 2) anyone who posts glorious photos of Scotland. Scrolling there makes me feel good. I'm trying to hang on to that emotion.

Election week. YIKES. I tried to stay away from it, but my 8-year-old is obsessed. It's nerve-wracking, but I don't want to discourage his interest in democracy. 

Do you remember where you were in November/December of 2000, while the country awaited the results of the Al Gore/George W. Bush campaign? I was two places. My mom had a mastectomy on that Election Day. My grandfather died that day. Things seem to come all at once for me, don't they?

My dad and I consoled ourselves in the hospital room by eating slices of American cheese, which we bit into the shapes of the states as they were called for candidates. We bit so many versions of Florida, we got quite good at them. 

I eventually had to fly back to New York, where I was an Associate Producer at CBS News. That fall I'd been working on a History Channel show called 20th Century with Mike Wallace, episode "Sex and Consequences," which documented the 20th century from the invention of birth control to the AIDS epidemic. We interviewed Dr. Anthony Fauci for that episode. Mike Wallace nailed every line without a mistake -- totally brilliant. Here I go namedropping again ... I'll save it for the book..

ANYWAY: while I was producing that episode, I was also working overtime on the 2000 election. Several of us in News Productions, including Mr. Elliot Kirschner (who has an AMAZING book out now co-written with Dan Rather: BUY IT HERE!), were working with the election coverage that now stretched out over a month longer than expected. For some reason we found it important to know all the state's nicknames and in what order they joined the union. We spent our lunch breaks eating NYC pizza and quizzing each other on The Gem State/43rd State. Ever wonder how the on-air talent can say, "Here we are in The Sunshine State..." without hesitation? The answer is: producers, who give them pertinent information before they go live. 

Where were you during that bizarre time of uncertainty in 2000? And what are you doing twenty years later? The same thing? In a different place? 

The glow of a woman who just voted for Hillary Clinton. Remember how that felt?

I'm still doing that. I hope the story I get to tell to my grandchildren about the Election of 2020 has a happy ending, all round. That I'm alive to tell my grandchildren, and that it ended with the person who cares about other people winning. It's looking good, but 2016, unfortunately, taught me not to be too optimistic. 

Uncertainty is the enemy of mindfulness. We sit with the present, but the present offers no solutions. We all want to get past this moment. Instead I am trying to embrace the good moments, however tiny they be. I taught my kids how to make coffee this morning, and I sat by the fireplace enjoying every sip. They are giggling. They are arguing. They both have screens. They are fighting plants or zombies or dragons or something -- protecting some imaginary world. I'm cozy in my housecoat, and doing what I love most: writing. 

I am here. Exhaling. Relaxing my shoulders (are you?). 

*****

Brigid Kaelin is a writer, composer, singer, in Kentucky. Here are ways to support her:

Sometimes I post Amazon links on this blog because I'm part of the Affiliate program, which sends me nickels or sometimes dimes when you buy a product I link to. The 2020 hustle is real!

Had to edit this photo bc someone  flagged it as pornography even though 75% of my post-mastectomy-breasts were covered by at white rectangle. GRRR.

I hope this list is helpful. Maybe you click all the links and buy all the stuff. Maybe you just read through and find that having knowledge of what to expect helps you feel a little more in control of your current situation. Most importantly, mastectomies are major surgeries. Allow yourself time to heal. Be kind to yourself. Splurge if you can. Life is short (don't we all know that by now)...

1. Mastectomy Pillow

I wish I'd remembered to bring this to the hospital with me. It would have been nice for the ride home, so my seatbelt wasn't so miserable. This pillow has notches cut out for your arms, which gives support and a great cushion to your chest. You won't be able to hug anyone properly for a while. Having a cushion helps hugs feel better, but also it's nice to just hug the pillow. This particular one has a great pocket in front to hold your phone or a pencil or airpods or whatnot.

$25 on Amazon.

2. Button-up pajamas.
Buy a few pairs of these, and wear one of them to your surgery, especially if your surgery is outpatient. You will not be able to raise your arms above your head for at least several weeks, so button-up pajamas (and eventually shirts) will be your best friend. Splurge on something soft. You've got cancer (or BRCA+) and it SUCKS and you deserve soft pajamas.
 

     

3. Button-up shirts A close second to the soft pajamas. You might already have these in your closet (or can borrow from a partner or friend). When you finally feel like getting dressed for real, you'll still have limited range of motion in your arms/shoulders. Putting a shirt over your head is a challenge, so button-up shirts are everything.

4. Shirts that hold your drains. I have two of these, and they were great. I just got my drains out, but I still like the shirts. They're really soft and have the perfect pocket for your drains. I could have clipped my drains or used a fanny pack, but these were much more pleasant. Also, the clips that came with my drains lost their clamping ability after a few days. The feeling of a drain falling down and tugging at your skin is painful and scary, and shirts like this prevented that. Also: SO SOFT!

5. A mesh bag for your drains This was SO nice for the shower. One friend told me I wouldn't need them, and I totally respect that everyone recovers differently. My mastectomy was outpatient and I knew that showering would be difficult without help, so I got the bag anyway. And I LOVED it. I hate things around my waist, so having this around my neck was a lot more comfortable in the shower. Also, check out local sewers, as this has become a popular item for people to sew. I had a mesh bag made in Louisville by Necessary Comforts. It was a gift from a Twitter friend.

Mesh bag by Necessary Comforts

6. Throat lozenges General anesthesia is a beast. You'll have a breathing tube during the surgery -- for a few hours. Your voice will be really hoarse, sore, dry, maybe even painful the days following the surgery. Keeping throat lozenges by your bed helps mitigate that.

7. Chapstick  Much like your throat is dry, your lips will be really dry. Treat yourself to some nice chapstick. You deserve it.

8. Wedge pillow

I LOVE this wedge pillow. It's adjustable, so you can gradually get flatter. Sleeping with drains in is tricky, so I also lined my sides with pillows. When you are able to sleep flat again, keep this around. I used it for a rotator cuff surgery earlier this year, and my husband uses it for reflux. My kids use it to relax. I use it to read in bed. It's really helpful, and I see us living with it for years.

 

9. Sleep mask

Sleep is everything to keep your mind and body healthy, but it's especially important when you need to heal. I had a stash of eyemasks from plane trips, but this eyemask changed me. Complete darkness. Soft. Room for your eyes to open but not brush against the inside of the mask. Luxury.

10. Earplugs I typically despise when companies market things "for women," like when you see a pink drill "for women" or a pink pen "for women" -- like, only the color is different, that's dumb. But these: they are pink, which makes them easier to find when you drop one. Mostly: they fit beautifully in my tiny ears. Also: you need to sleep. A lot. These earplugs + the above sleep mask = pure magic.

11. Resistance bands for at-home Physical Therapy You may go to PT, or during a pandemic you may not feel safe there. Either way these small resistance bands are helpful to stretch your muscles and regain strength and range of motion.

12. Tablet holder - for bed This was SO useful, especially when I was up in the middle of the night for no reason. Your arms will be weak and you will be tired. It's nice to put a pillow on your lap and put your phone or iPad up there.

13. Soft housecoat with POCKETS I have become obsessed with housecoats. And they have pockets!! I had my mastectomy in October, so plush housecoats are my jam. I have two, and I live in them.

Quick links to various updates/sites: https://linktr.ee/brigidkaelin

Well, technically it's two weeks and six days, but I need to post something. People are asking, and I so appreciate that. I'm feeling well, but extremely exhausted. I'm grateful that my cancer was Stage 1. I'm also still in limbo awaiting further pathology to see if my treatment is finished or not.

I miss my mom a lot. I miss my dad a lot. I am also glad they aren't alive to see their only child go through cancer treatment. I could not imagine that pain, and I suspect it would be a lot worse than the anguish that I feel on a daily basis. 

I'm working on a few blogs that I hope will be helpful to other people going through breast cancer. One will be along the "what to expect when you have a mastectomy [during a pandemic]" and another will be "what you need when you are recovering from a mastectomy." 

Today is just an update, however.

I am overwhelmed with love. While wrestling with guilt about the GoFundMe, so many of you have reminded me how much I have given to the community, whether it be from playing a zillion benefit concerts, underpaid gigs, or this FREE blog I have written for fifteen years, one-on-one coaching I've provided to countless artists, and more. I've also paused billing on my Patreon, so if you're a member over there, you get at least one free month (I may pause December too).

Others (both friends AND therapists!) have reminded me that none of that stuff matters; that even if I hadn't been giving, it doesn't mean I don't deserve to be showered in love and community. Someone always has it worse, but that doesn't mean I'm not deserving.*  

The GoFundMe has been amazing, especially in a year when I lost my job. We've been using the funds to pay medical bills (which will total at least $28,200 for 2020 --  yes, it should be criminal, but that's another blog), to purchase some things that have made my recovery much easier, and to order meals for the family. I can't stand on my feet for more than a few minutes at a time, and David works 12-14 hour days. These funds and friends' meal deliveries have been a huge help and we appreciate them SO much. 

Updates/new FAQs (previous FAQs answered on my previous blog):

• I did get reconstructive surgery (No judging, please. I know several of you suggested that I don't go that route. But I did. I'm a rebel!)
  
  
• I got my drains out on Monday. That felt SUPER weird. (more about that on my instagram)
  
  
• I'm having phantom LETDOWNS. How crazy is that??? (A letdown is a weird, tingly feeling you get right before your milk starts to come out of your nipples when you're pumping or breastfeeding. I haven't had that feeling in years, and now I don't even have any milk ducts or nipples. But the brain is weird.)
  
  
• I do not know what comes next. There are several possibilities, but they all depend on the recurrence score that is dictated by the Oncotype Dx. In other words, I'm waiting on more pathology. Cancer: it's all about the limbo.
  
  
• My gynecologist wants me to get some uterine and ovarian scans STAT, and I'm all about that. Early detection, folks. 
  
  
• I need to go to physical therapy to regain strength and range of motion, but since COVID is rampant and I'm immunocompromised: I'm not going. I'm attempting my own home exercises, but I do not trust the other patients in the PT offices who can't even seem to where a mask properly.
  
  
• I'm supposed to start walking for exercise, and the doctors specifically suggested a treadmill or elliptical rather than outside walks. If anyone in Louisville is getting rid of a treadmill or elliptical for a reasonable price, will you please message me? Thanks.
  
  
• Repeats of previous answers for those curious: I'm negative for *known* mutations (though genetic counselors believe it's on a gene that hasn't been mapped yet). My four tumors were all ER+, PR+ and Her2-. 
  
  
• I'm anxious to get a second opinion from oncologist, but I am nervous that the oncologist I've been assigned will think I don't trust him. I like him a lot, but I have been advised by many of you to always get a second or third opinion to see what treatment options should look like. I haven't made any phone calls yet because I have phone anxiety. 
  
  
  SO MUCH LOVE. Do your mammograms, y'all. If you have dense breast tissue and/or are high-risk, push for an MRI. Doctors will tell you about the false positive rate. You can decide for yourself. I prefer false positive to false negatives. That's just me though. WOMEN SHOULD HAVE A CHOICE IN THEIR HEALTH CARE.
  
  

*Also I have been giving away 20% of the GoFundme to other, less-widely-known victims of cancer medical bills and various non-profits. This assuages my guilt a little bit and also helps people who are very much in need of help to get cancer treatment, but who don't have the public following that I do.