Sharing My Patient Story with Conquer Magazine

Conquer: The Patient Voice is a fantastic publication for cancer survivors and those living with cancer. I was so grateful for the opportunity to share my story in the October issue!

Stories are powerful. I knew that before I was diagnosed with cancer. As a fiction writer and as a science communicator, I understood the value of stories, the impact they could have beyond facts, numbers, and concepts. Personal stories connect us to the experiences of others like nothing else, and they can inform, inspire, give hope, and educate all in one.

I’m a big fan of stories, and the stories of patients in Conquer Magazine have inspired me, given me hope and insight, and educated me in ways no scientific study or statistical graphic could. No disrespect to science. It’s my bread and butter. But using the power of personal stories to engage people is a gateway to informing them.

I encourage all breast cancer survivors and those living with breast cancer to share their stories. At your level of comfort, of course. Share with your family and close friends. Share with survivor groups. Or share with a wider audience and use your platform to advocate and educate.

You are powerful. So is your story.

Here’s the link to my story! When Cancer Asked Me What I Was Made Of

Some Days, There Just Aren’t Enough Spoons…

It’s Day 20 of National Breast Cancer Awareness Month! Recovery from surgery is a funny thing. One the one hand, I have Wolverine-like powers in terms of physical healing. Most of the time. Except for those days when I’m in a funk. Those days when it’s hard to get out of bed, but I can’t sleep. Or I start falling asleep at my desk and get into bed, but can’t go to sleep there. When I’m excited to do something and then, when it’s time, find myself too fatigued mentally and/or physically to do the thing.

Which makes me sadder. And more fatigued. And it’s harder to get up the next time until and unless I force myself. But I pay for that with interest.

Fatigue, physical, mental, or the horrible double whammy of both at the same time, really and truly sucks donkey balls.

Photo Source Here.

Spoon Theory is a metaphor for illness – originally chronic illness in the form of lupus and then expanded to include mental illnesses like anxiety and depression. It holds that healthy people have an unlimited amount of spoons, or possibilities, or energy—a form of currency—to accomplish their daily tasks with plenty left over for fun. With chronic illness or mental illness, your currency is limited. You don’t have as many spoons. So you have to budget. And you many only have enough spoons one day to shower. Or maybe you can shower and go to work, but you don’t have enough spoons to come home and make dinner or go out with friends.

Some days, you don’t have enough spoons to get out of bed.

Christine Miserandino, who came up with this brilliant analogy, explains it much better and you should totally grab a copy of But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and Other Superheroes Battling Invisible Illness to learn more, but that’s where I’ve been for the past several days. I have a friend who has fibromyalgia and other friends who have chronic illnesses who deal with this more than I do, though they still consider me a “Spoonie.” One of those friends once looked at me a few years after my 3rd or 4th cancer surgery and told me I was running myself ragged and was in danger of collecting another chronic illness and, as a result, losing more of my daily ration of spoons.

That hit me HARD. I was and still am a doer, a mover, a shaker. I walk fast. I’m always busy. I get shit done.

I still can, but not at the expense of my precious spoons. So, for the past two days, I’ve spent a lot of time in bed (going to bed early, napping, resting my eyes on the couch) and struggling to not beat myself up for it. It’s okay. Things will get done eventually. The important things. When I have more spoons.

So, dear readers, don’t beat yourselves up. Save yourselves. And your spoons. You’re worth it.

The Healing Power of Pets

It’s day 17 of National Breast Cancer Awareness Month! Today’s post is all about celebrating our pet pals and how they support and heal us when we have cancer. I’m a lifelong cat fanatic. My first pet was a ginger tomcat who chased me through the house and yard and then curled up with me for a well-earned nap. I’ve been hooked ever since. Cats are wildly entertaining goofballs that toe the line between completely endearing and completely annoying, and I’m here for it!

Enjoy these goofy cats!

I am currently owned by three cats.

Vanilla (full name Vanilla Wafter Sieders Asshole IV), my son’s 5 year old Siamese who is gorgeous, had the biggest and best purrs, likes to give love bites and has a weird foot fetish. Then there’s Kuro (Kuro I’m the Good One Sieders), my daughter’s 4 year old black beauty who is a world class snuggler, has the sweetest purr, and turns into a ninja assassin when it’s time to trim her claws. Finally, my black cat (pandemic pet) Sheila (Sheila Bad Bitch Sieders) is 2 years old, gorgeous, dumb as a bag of rocks, and wildly entertaining. She also meows loudly and nonstop.

Vanilla looking distinguished and handsome in his winter holiday bowtie collar.

Aside from their many and varied personality quirks, whenever someone in the family is sick or recovering from illness (in my case, multiple surgeries and radiation therapy), the cats are on that someone 24/7, working in shifts to provide comfort and company. Kuro takes on the brunt of the work, curled up in a lap or on a chest with soothing purrs and comforting warmth, letting us stroke her silky soft fur and relax into her calm.

Kuro sitting on my lap (covered by her favorite soft blanket) in my home office. Yes, that’s a ceramic skull on my desk. And a hand-painted ceramic mermaid. And a “Donut Give Up” plaque. Don’t worry about it.

Vanilla will then take over, making biscuits on the blanket, purring, and demanding pets. He’s not big on cuddles, but he likes to sit close and slow blink. He’s 15 pounds of fluff and squishy love.

Sheila is not best pleased to be at the vet and is trying her best to hide behind my daughter.

Then, there’s Sheila. She’s a noodle of a cat, slinky and svelte, acrobatic, energetic, and adorable with her single braincell. She’s young, very busy playing and getting into all kinds of cat shenanigans, and always makes me laugh. She’s not often cuddly, but when she is, she melts. Her purrs are soft and subtle, and her fur is as sleek as she is.

I’m a believer in the healing power of cats, but what is the scientific evidence? Turns out, the emotional support benefits of pets for cancer patients are supported by the American Cancer Society and by a recently published literature review. Click on the links for tips to stay safe and healthy with pets while undergoing cancer treatments.

As long as your healthcare provider gives you the green light and you take precautions to protect yourself and your pets during treatment, take all the fur baby love you can get!

Post-surgery Check In

It’s day 13 of National Breast Cancer Awareness Month! Today, I’m taking a break from the usual programming to talk about my breast reconstruction journey, which I hope is (finally) over. I had the misconception that breast reconstruction was relatively simple, one or two procedures and done!

Image Source Here. Also has information about different types of reconstruction!

Yeah, that was before I got breast cancer. Oncoplastic reconstruction (lumpectomy followed by reduction and lift) was a one and done, as is (or can be) aesthetic flat closure (going flat). But building new breast(s) after mastectomy is complex and involves multiple surgeries/procedures to achieve symmetry and an aesthetically pleasing result. That’s where I’m at in the process.

I talk about this in Talking to My Tatas, and include pictures of where I was in the process as of 2021, but it might be useful to include a timeline and description of the various procedures I’ve had. Everyone’s reconstruction process is unique and tailored, but it should give you an idea of how involved the process can be and often is for people who’ve been diagnosed with breast cancer.

June 2018 – Tumor removal from left breast by lumpectomy and oncoplastic reconstruction

September 2018 – Radiation therapy on left breast

February 2020 – Diagnosed with residual disease in the left breast (at the beginning of the Covid-19 pandemic)

May 2020 – Unilateral mastectomy to remove left breast and to implant expander

(Involved several intervening procedures like 3X saline fills for expander and physical therapy to regain mobility after mastectomy, which was compounded by radiation damage to the skin over my left breast and breast tissue)

November 2020 – DUG flap reconstruction (grafting of thigh and muscle/skin tissue from right thigh to build foundation of left breast plus mastopexy (reduction and lift) on right breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

February 2021 – Liposuction and fat grafting into left breast + more tweaking on the right breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

July 2021 – Liposuction and fat grafting into left breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

December 2021 – Liposuction and fat grafting into left breast and scar revision on right breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

October 2022 – Liposuction and fat grafting into left breast and minor scar revision on right breast

Image Source Here. Also has information on thigh flap reconstruction procedures.

That’s seven procedures, not counting biopsies and a lumpectomy from 2016 to remove a benign papilloma, in two years since residual disease detection. It’s a LOT! I count myself lucky to have a brilliant surgeon who has worked with me at my pace to get symmetry between a mostly natural right breast and reconstructed left breast, which is no easy task. And I have a great support system. But it’s a LOT. Each surgery involves recovery from anesthesia, incisions, bruises a plenty (lipo is brutal) and the mental and emotional impacts (which included depression and hypervigilance that made me feral). That required therapy, another part of the process.

Is it worth it? For me, the answer is yes. I’m almost back together and beyond amazed and pleased with how I look and feel. I am whole. Not the same, never the same, but whole. It’s a process. Remember that when you’re checking in with your survivor friends who may be waiting for follow-up procedures, tattoos or surgical nipple-building procedures, trimming of excess skin around incision areas, etc. It’s a process. Be kind. If you’re a survivor in the thick of reconstruction, remember to be kind to yourself and that YOU ARE WORTH IT!

Shout Out to The (Incomparable) Bloggess for Inspiration and Support!

Sometimes, if you’re lucky, something comes into your life just when you need it the most. That was my introduction to The Bloggess (aka Jenny Lawson aka Amazing/Funny/Fabulous human being). I LOVED her first book, Let’s Pretend This Never Happened (A Mostly True Memoir), gifted to me by my BFF. If you haven’t read it, treat yourself. Her other books are just as poignant, engaging, and hilarious. They’re like Pokemon – gotta catch them all! Or maybe potato chips – betcha can’t read just one. Something like that.

Better yet, grab the Audiobook! Jenny narrates it, and the humor and heartache and hope just flows from her voice directly to your brain cells, releasing serotonin and making you feel better no matter what you’re going through. Which brings me back to my first point – the something-that-comes-into-your-life-just-when-you-need-it-the-most point:

Yes, I am a fangirl and yes, I show love to show my appreciation!

The day I endured two breast biopsies was a bad day. It would have been worse without Jenny, who allowed me to escape into her world and kept me company while I was waiting to go on the slab. And guess what?

SHE FOLLOWED ME BACK ON TWITTER!!!!

This was the highlight of my year, people! It also kept me going and inspired me while writing Talking to My Tatas. Jenny’s story touched and inspired millions, and she’s saved lives, y’all! I wanted to do the same. Whenever I got frustrated, stuck, or wanted to just give up on the writing, querying, and rejections, I remembered Jenny.

Fast-forward to the present, and guess what? Jenny Lawson endorsed my book!

“I don’t know much about cancer, but I know good writing and humor, and Dana Brantley-Sieders has those in spades.” — Jenny Lawson, #1 New York Times-bestselling author of “Let’s Pretend This Never Happened”

I’m delighted, grateful, and I’m totally going to stalk visit her at The Nowhere Bookshop someday soon. Thanks, Babe!

Cancer and Career: Stigma, Discrimination, and Other Challenges for Patients and Survivors

Photo credit Deposit Photos.

A cancer diagnosis affects all aspects of a person’s life, and that includes employment. Coupled with the astronomical cost of cancer healthcare, especially for the un- and underinsured, the short and long term impact of cancer on financial stability and employment can be disastrous. If you are female, a person of color, disabled, and/or LGBTQIA+, these negative impacts are very often compounded by sexism, racism, ableism, and homophobia.

The stigma is real*.

Sexism, racism, discrimination, and other biases make working, maintaining productivity, and feeling valued for your work much more challenging in the face of cancer. I’ll cover some of those challenges in this post, as well as protections in place within the United States to alleviate them (with the caveat that we need more), and additional policies and protections that we could implement to protect and support cancer patients and survivors in the workplace. I’ll focus on breast cancer, but many of these challenges and solutions apply to people diagnosed with other types of cancer.

What are some of the challenges cancer patients and survivors face when it comes to work and careers? According to a recent study published in the Journal of Clinical Oncology challenges like job loss, decreased earnings, and increased spending (the last two described as “financial toxicity”) are some of the greatest. It seems like a no-brainer: if you lose your job or part of your income plus healthcare coverage while the medical bills for treatments pile up, you’re not really surviving all that well financially, let alone thriving. But we like and trust peer-reviewed data here, so let’s look at data.

The Problems

Click here to link to source.
  1. Financial distress caused by job loss/lost wages not only makes you feel worse, it has also been linked to “increased symptom burden and emotional distress and to decreased quality of life and treatment adherence.” In other words, if you’re strapped for cash or you’re suffering from the mental health effects of a cancer diagnosis without resources, you’re not as likely to be treatment or medication compliant. That leads to poor outcomes. Worse, cancer patients are more than twice as likely to file for bankruptcy after diagnosis, and bankruptcy is associated with almost double the risk of death among survivors.

That’s the biggie, and adds insult to injury. You have to pay for your treatments in order to live, but you may have to go bankrupt to do it, which increases your risk of DYING!

2. The scope is significant. Around 45% of people diagnosed with cancer in the United States are working age (20-64). This affects a LOT of people, y’all!

3. Many, if not most, people diagnosed with cancer do not have the means, privilege, or opportunity to take leave, paid or unpaid, for treatments, even under the Family and Medical Leave Act (FMLA). In fact, only 21% of low wage workers have access to paid sick leave. And for many workers who do, there aren’t protections in place to make certain they can return to their jobs following treatment. The Americans with Disabilities Act (ADA) provides protections for cancer patients against workplace discrimination and requires employers to make reasonable accommodations to allow cancer patients to continue to work, but it only applies to employers who have 15 or more workers. And a significant percentage of low wage workers are employed by small businesses that are exempt from FMLA and ADA requirements.

These are the same essential workers we’ve failed as a nation to support during the global pandemic.

4. Aside from concrete challenges, the mental and emotional health costs of a cancer diagnosis can reduce social engagement and a patient’s sense of self worth. I work as a cancer researcher and a cancer center, have a TON of privilege, and even I’m not immune to these challenges*. If I’m not, imagine how awful it is for patients and survivors with fewer resources and protections.

5. I cover disparities related to cancer care, outcomes, and financial toxicity in my book, but suffice to say, if you are female, not white, not able bodied, and not straight, you are likely to disproportionately experience all of these challenges on a much more significant level thanks to racism, sexism, homophobia, and ableism.

Existing and Future Solutions

In addition to FMLA and ADA protections (for those who qualify), many non-profit organizations offer financial assistance to cancer patients. Funds are available from Susan G. Komen for the Cure, the American Cancer Society, Young Survival Coalition, and other organizations, many of which I cover in my book, that can be used to cover the costs of treatments, bill pay, home health care and childcare, and a variety of other expenses.

Photo credit Deposit Photos.

But to truly and comprehensively tackle this issue, we need systemic changes. Some of the more so-called “progressive” solutions, like universal healthcare coverage, tend to be met with skepticism or outright hostility from free-market (*cough, cough – rich, white conservatives – cough, cough*) advocates who complain about lack of “personal responsibility,” think the current system works just fine, and/or think vouchers for purchase of private insurance and other non-government solutions work better (even though universal healthcare works very well in most other industrialized nations).

Aside from universal healthcare, there are other initiatives that have worked in other nations that might appeal to conservatives while making a significant impact on job retention and financial stability for cancer patients and survivors. For example, as noted in the Journal of Clinical Oncology Society study cited above, “A 2012 systematic review evaluated the effectiveness of government policies in place from 1990 to 2008 in Canada, Denmark, Norway, Sweden, and the United Kingdom to change employer behavior with regard to return to work. The most successful policies included financial incentives for employers to hire people with disabilities; flexibility and adaptations in the work environment, particularly with flexible schedules and giving employees more control over work demands; and programs that involved employers in return-to-work planning.” These incentives benefit everyone, including employers, patients/survivors, and society as a whole.

Patient-oriented interventions that tackle physical, psycho-educational, and/or vocational portions of cancer patients’ employment retention were associated with higher return-to-work rates compared to patients who received standard care. And patients who received this type of multidisciplinary intervention “experienced a significant increase in perceived importance of work, work ability, and self-efficacy with regard to returning to work, and return to work was 59%, 86%, and 83% at 6, 12, and 18 months, respectively.”

It’s going to take a lot of work in the form of political will, advocacy, legislation, and incentives to solve this problem. What can you do to help? Contact your elected officials and voice your support for programs that support cancer patient financial stability and access to reliable and affordable healthcare, job retention, and return to work with appropriate accommodations. It’s the right thing to do, and it’s good for the economy, society, and humanity.

If you’ve experienced workplace discrimination based on your status as a cancer patient/survivor, click here for information about your rights and what you can do to protect them.

*Story Time

You’d think being a cancer researcher who works at an academic institution dedicated to cancer care, research, and saving and improving the lives of those diagnosed with cancer, I’d be immune to the bullshit discussed above.

In many ways, I am. Thanks to a supportive Department Chair and Division Chief (both female), I was granted an extension on my tenure clock, additional discretionary funds, and professional/personal support from my (largely female) colleagues. To these individuals, I see you. I appreciate you. I love you.

Then there are the (largely male) colleagues who have made my experience working while undergoing cancer treatment and returning to work after the Covid-19 shutdown and a (very short) medical leave a lot shittier. My passion for breast cancer researcher didn’t diminish when I was diagnosed. I became MORE passionate! I worked through radiation treatments, horrible systemic therapies while trying to find one I could live with for 10 years, and after surgeries when I remained swollen, sore, fatigued, and mentally struggling with all of the emotional fallout associated with cancer.

And yet…a peer reviewer for a grant I submitted felt the need to make the following comment in his (I’m 99.999999% certain it’s a dude) review summary: “Dr. Brantley-Sieders is an Assistant Professor of Medicine…who completed her Postdoctoral fellowship in 2003. A concern is her lack of productivity, with only a single first or last author publication since 2017, and only 4 in total since 2012. That said, as noted in her letter of support by [DEPARTMENT CHAIR], she is a breast cancer survivor and there may be circumstances that underlie her less than optimal extent of productivity.”

First of all, it’s not true. I had and have more first/senior author publications since 2017 and 2012. In fact, I have published over 55 papers in high tier journals, which demonstrates my highly collaborative approach to science. Secondly, WHAT THE ACTUAL FUCK??? This reviewer thought it was okay to weaponize my own breast cancer diagnosis on a grant I submitted to a BREAST CANCER RESEARCH ORGANIZATION in the presence of other BREAST CANCER SURVIVORS serving as consumer reviewers. But, since my application wasn’t de-identified, and with my hyphenated last name (for which I’ve received inappropriate feedback about), this reviewer felt entitled to pose this outrageous and untrue criticism on an application by a female scientist.

Rather than hiding in a corner to lick my wounds, I reported this to the organization starting with leadership. Was it a risk? Of course! Backlash and retaliation are always a risk, especially for women who dare to speak out. But, if I stayed silent, I would have become part of the problem. I refuse to do that. I’ll be part of the solution.

I’m in the middle of another situation with a colleague I once trusted (my mistake) that centers around perceived shortcomings related to how I am balancing my work and ongoing treatments. What started as a communication issue is rapidly escalating into something more serious. At best, it’s a problematic situation. At worst, it may represent a serious violation of policy. I hope to resolve it in a way that is fair and satisfactory to both parties, but the damage is done in terms of trust and my perceived value to the project. Again, I could just sit quietly and accept it, but I’m not going to be part of the problem. I’m a fighter. I’m a damned good researcher who has made and will continue to make valuable contributions to science, and I’m worth it.

$hit You Shouldn’t Say To Cancer Patients Or Survivors: Part 1

(Filched from my personal FaceBook Page. It’s not plagiarism if it’s mine)

Some thoughts on people who think my cancer wasn’t “that bad,” was “baby cancer,” and wasn’t such a “big deal.”

Yes, people have said that to me.

People have also asked me why I think I got cancer. I could go into a lengthy discussion of the Central Dogma of Molecular Biology, random mutations and failed/imperfect DNA repair, etc., or I can just get pissed off because I KNOW they’re asking if I got breast cancer because I’m fat and every now and then I like a nice juicy steak or cheeseburger. From now on, I think I’m going to just use this as a reply:

Photo credit somewhere on FaceBook – TinEye results were vague and I have NO idea who came up with the text. But it’s pretty fucking awesome! If it’s yours, tell me so I can give you credit.

I had breast cancer. I didn’t have to have chemo. I’m lucky and benefited from decades of biomedical research that made OncoType DX testing possible (I WILL get around to blogging about this test eventually, I swear), and I happened to have a low score.

I still had cancer. I’ve had three surgeries (and I’m not done), radiation, and I’ve got a ten year sentence with estrogen blockers and medically induced menopause. I’m still lucky. I know and understand that. Very well.

Photo credit Snarky Cancer – Seriously, check out their site and their merch. I’m going to order about 5 totally snarkalicious T-shirts!

I still had cancer. When someone in or out of the survivor club (it’s always worse when it’s another survivor) tells me I had “baby cancer” or “good cancer,” I get a special kind of homicidal that will probably get me locked up someday when I finally lose my 💩.

Never, ever, EVVVVVVVVVER say that to someone who has had cancer. It’s not a contest. It’s a suck fest and no one, not even fellow survivors, should not presume to understand the level of suffering endured by cancer patients and survivors.

Don’t be a dick.

Thank you for coming to my TED talk.

Surgery Made Me An A-hole

First off, I’m doing GREAT nine days after autologous (fancy term for my surgeon using my own fat and tissue to build a new boob) breast reconstruction! The procedure went very well, and the graft took. My amazing surgeon, Dr. Galen Perdikis (and his team, including the surgeon who assisted with the microvascular attachment work), took muscle and tissue from my right thigh and made a very nice left breast by grafting it under the skin he saved following my mastectomy back in May. The official medical lingo for this type of reconstruction is diagonal upper gracilis (DUG) flap reconstruction. I’ll blog more about the specifics and the experience later, but right now, I want to talk about something else.

I want to talk about a bit of an epiphany I had.

Disclaimer – I have NO scientific or medical data to back me up on this, partly because I couldn’t FIND IT on Google or PubMed. This could be a search strategy issue (the closest thing I did find was Post Intensive Care Syndrome, PICS), and I hope it is, because I’ll be super disappointed if no one has studied the phenomenon I’m experiencing right this very moment—a phenomenon that I’ve decided to call Wounded Animal Asshole Syndrome, or WAAS.

This should TOTALLY be included in the DSM. And I fully expect credit for it.

Here’s the deal. The first time I left the house on my own after surgery, which was yesterday, I was, for lack of a better word, a RAGING asshole. Now anyone who knows me will tell you that I can be a Grade A asshole on any given day under the right set of circumstances, but this was something else. Something visceral and deeply animalistic. I was angry, suspicious, and viewed every other human around me as a potential threat. Like a wounded animal, I gave off a heavy dose of don’t-fuck-with-me vibes that fell just short of low, guttural growls.

By the time I reached the Breast Center for my appointment, I was a little worried about the safety of those around me.

Photo by Aleksandr Burzinskij on Pexels.com

Then, it hit me. I am—quite literally—a wounded animal. Yes, I volunteered to undergo the procedure that left me with the healing surgical incisions I was subconsciously guarding. Yes, my rational mind knew that the arguably weird man in Walgreens wasn’t out to snatch me and throw me in his trunk. And yet, I was experiencing the same level of heightened awareness and suspicion of strangers around me that I felt shortly after the birth of each of my children—a time during which I was still sore, bleeding, and physically vulnerable.

That fed into the horrible postpartum depression (PPD) episodes I experienced, but that’s a story for another time…

I have no idea if this is a common thing or a me thing (I suspect it’s a common thing because I’m not special, no matter what my mom told me growing up), but it is both fascinating and disturbing. It happened again today when I took my son to the zoo and we encountered a crowd at the entrance. In addition to generalized COVID anxiety (note: the Nashville Zoo is SUPER cautious, mandates masks, and limits the number of daily visitors like a responsible organization), I was freaked the fuck out and felt the urge to turn in a circle and hiss to keep people away from me and my cub, er, I mean, son. It was weird. It doesn’t happen when I’m out with my mate (husband) or when I’m in in a small herd (of socially distanced friends)—only when I’m alone or with a child (who is almost as tall as me, which makes it weirder).

The only reason I can think of for this bizarre behavior is that it is a throwback from ancestral human days when we were running from cave lions, saber toothed cats, and wooly rhinos. Hide pain, conceal wounds, show no weakness, and act so aggressive that the big scary predator won’t bother with you and will instead seek an easier meal.

Maybe it’s a manifestation of generalized anxiety disorder (GAD), but honestly, I’ve been managing that very nicely with medication and therapy—or so I thought.

Anyone else out there have this? Drop me a note in the comments. We’ll call it an informal survey.

Reconstruction Surgery and Resilience

With so much uncertainty in the world, it’s nice to be fairly certain about one thing: tomorrow, I will get a new left breast. It’s a mixed bag of emotions for me, but the strongest are relief and hope.

When I wake up tomorrow afternoon from anesthesia, Covid will still be ravaging the planet. We may or may not know who will be the next president of the United States. I have no idea whether or not my latest research grant will be funded, nor do I know what will happen to my quest for tenure in 2021. But, if all goes well, cancer’s reshaping of my body will end.

A wise friend once told me that the only certainty in life is uncertainty. I’ve found that to be true in my almost forty eight years of living. For someone who suffers from anxiety, it is a difficult truth to face. I’m the type of person who thrives on stability, on knowing what to expect, and on consistency. There has been precious little of those comforts for me since April 19, 2018, and especially since February 2020. Discovering that I still had residual disease in the form of a 6 mm tumor remaining in my left breast pulled the rug out from under me and stole my illusion of safety.

That’s one lesson I learned from cancer—there is no such thing as safety or certainty.

So how do I cope? How can we as survivors cope? Building Resilience.

Diagram of Resilience

For me, one strategy has been to let go of the illusion of control. Or, to really refine the concept, I’ve been working hard to catalog the things I can control, like staying as healthy as possible with diet, exercise, regular health screenings, medication, and yoga/meditation. These measures may or may not prevent a recurrence, but they will help me live a better, healthier life. There’s no downside.

Other things I can control include the effort I put into taking care of my family. I can love them, feed them, create special moments and memories that nothing can take away, not even cancer. I can take pleasure in the small, daily moments that I used to take for granted. For example, I spent about thirty minutes this morning watching birds at my feeders. We have so many birds, from tit mice (snort) to a red-bellied woodpeckers, and chickadees to sparrows! I’ve always found solace in nature. Other small moments like a cup of tea enjoyed sitting on my deck with a chill in the air and the sun caressing my face bring me joy. I’ve had the BEST time cooking with my kids. Potstickers with my daughter and meat and rice bowls with my son have sustained us physically and emotionally. Again, there’s no downside to savoring the small moments of joy in everyday life.

I cannot control whether funding agencies select my research grants for support, but I can control the quality and integrity of my research. Funding is even more uncertain today than when I entered the field, but it is still an exciting and hopeful time to be a scientist! There are many exciting avenues of breast cancer research open for me to pursue, and if I have to leave the field (or, more likely, switch from tenure track to research track) in a few years, I’ll leave behind a body of work that I can take pride in, and I can and will continue to work in other avenues, like education and outreach. I can control how I adapt to career challenges.

The best I or any of us can do is to live every single day to the fullest. We can choose kindness, positivity, and follow our paths to making the world a better place, starting with ourselves and our community. Every day is a gift, and tomorrow’s gifts are yet unknown but so inviting. I look forward to being physically whole. I look forward to getting back to regularly scheduled life with a newly restored body, building strength and resilience.

I look forward to hope, which is something I can rely on.

I don’t feel pretty, and that’s okay

Ugly witch – disguise – I kinda want one for Halloween!

So I’m 5 months out from my mastectomy, waiting for reconstruction of my left breast, and I feel fugly. Not just ugly, but the kind of grotesque that can only come from looking in the mirror and STILL being shocked to see one nipple hanging significantly higher than the other. When I’m clothed it’s slightly better. I can shove my fake boob into my bra and sort of look balanced.

I say “sort of” because the damned insert moves around and is slightly bigger than my intact right boob, so I have to stuff the other freakin’ side with inserts from sports bras, which also move around, and I swear I can tell that I’m lopsided when I look at recent photos.

My family assures me that no one else notices, and maybe they’re right, but I notice, and it makes me self-conscious. It sucks. I also feel old. I’m coming up on my 48th birthday, which technically means I’m still middle-aged. But between the breast cancer diagnosis three years ago, two surgeries, radiation, and three years in medically-induced menopause plus estrogen suppression, I swear I’ve aged ten years.

Am I grateful to be alive? You bet! Do I feel lucky that my prognosis is great? Of course! Is every day a gift? Abso-fucking-lutely! But there are days when cancer and all that comes with it crashes down on me and I get sad, tired, and pissed off about what the big C has done to me.

I’m not alone. If you’re out there feeling the same way, you aren’t alone. We are strong. We are survivors. But we are also human and we will have bad days. And that’s okay. We can’t avoid them, and we have to endure them, but we don’t have to get sucked into the pit of despair. Here are some coping strategies I’ve found helpful. Maybe they’ll help you.

Put on some cute clothes

Happy plus size women shopping – I grabbed this one from Deposit Photos for the description alone!

Fall is here, and that means it’s time to pull out those fuzzy sweaters, leggings, boots, and cute scarves. I’m self conscious about my neck and my cleavage, so scarves have REALLY helped. I’m not going out as much thanks to Covid, but I’ve made it a point, at least once a week, to put on real clothes (instead of the athleisure wear I’ve been rocking since work-from-home became a thing). I choose colors that make me feel bright and shiny, and select from outfits that I’ve been complimented on before. It helps! Those are the days when I can focus more on what I like about my body and face rather than what I don’t like. Have fun, wear what makes YOU feel beautiful, and don’t worry about the folks who say women of a certain age/weight/body type shouldn’t wear certain clothing. The only thing a woman should NEVER wear is the weight of other people’s expectations.

Have Fun with Makeup

My amazing teen and me with makeup!

I’ve always been pretty basic when it comes to makeup. Foundation, blush, concealer on the blemishes, and boom – done! Fortunately, I have a teen who is super creative, into cosplay, and LOVES makeup. Thanks to her, I’ve upped my makeup game and it has helped me feel pretty. A lovely sales associate at Sephora taught me how to contour, another fantastic salesperson at Ulta recommended primer and an eyeshadow pallet that I LOVE – dramatic eyes really work in the era of masks – and my teen routinely helps me out with the eye makeup game. The old barn does look better with some fresh paint!

Simple Self Care

Anything from drugstore face masks to bathbombs to nice-smelling lotion can be cheap ways to pamper yourself when you’re feeling like a wart on the ass end of a troll. Have a soak, wash your hair (especially if it’s been daaaaaaaaays), brush your teeth, put on some perfume, and treat yourself like the absolute fucking QUEEN you are. You are worth it.

Take a Freakin’ Selfie and Send it To Your Friends

I stole this one from “Everything is Awful and I’m Not Okay,” which I totally recommend you print out and post to your bedroom door. Take a selfie, send it to your friends and/or put it on social media – Facebook, Instagram, Snapchat, hell, make a TikTok video. Speaking of TikTok, get on there and find yourself some support from Your Fairy Godmother @starr_mcqeen_, Your Non Binary Uncle @thaddeusshafer, and the aggressively supportive @angryreactions. They don’t think you are pretty, precious, loved, and worthy, and awesome, they KNOW it and they’ll tell you. Your friends and social contacts will tell you you’re pretty, and you’ll believe them and feel better.

Send ME a selfie and I’ll tell you how pretty you are!

Got any other tips? Let me know. I can use all the help I can get, and I’ll share the love!