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!

Thoughts on My Upcoming Mastectomy

First off, apologies for the long absence. Between working from home, homeschooling, gardening (I’ve got a CRAPTON of veggie plants and flowers that I love, pet, kiss, and call my green babies), bread baking (while the yeast lasted), quilting (I’m seriously turning into my grandmother), I’ve been a little busy in quarantine.

We’re all just trying to get by here

Busy is good. Busy has kept me from wallowing and perseverating over my upcoming mastectomy. Two years after oncoplastic surgery to remove the tumor in my left breast and reconstruction involving a breast reduction and lift, we found residual disease. My left breast has to go.

Thanks to Covid-19, my reconstruction will be delayed. That’s not super unusual, as women who opt for implants normally get expanders to stretch their skin prior to permanent placement of the implant. But it’s still stressful. I’ll be lopsided for a while, but I opted to keep the right breast to preserve sensation on at least one side. You knew you lose ALL sensation following mastectomy, right? The new boobs look fantastic and do you no good from an intimacy standpoint.

More on that in a later post.

This post is about perspective, looking ahead to tomorrow, the next few weeks, the next few months, and how to move forward. I received the following message from a Facebook friend, and it is perfect. I’d like to share it with all of you:

“Happy Mother’s Day, Dana. The most Hallmarkesque of the Hallmark Holidays. I trust that Patrick and the brood are making a fuss over you today, and every day.

Patrick has spilled the beans about tomorrow. I imagine that you must be both determined and more than a little whacked out and scared. If you weren’t, I’d be more worried about you.

Surgery is a big deal, and you wonder what life will be like on the other side. At least I did as I prepared for mine last year, when I was blindsided by news that my prostate had to go. I’ll spare you the gory details, but I am delighted that you will be spared the indignity of having a rubber tube jammed up your wee wee for 2 weeks.

I can report that almost a year later, life is still good. Turns out that my masculinity had virtually nothing to do with the operational status of Mr Happy. Your femininity has nothing to do with your hooters, to use the most inoffensive yet funny term I can think of. Bazooms ran a close second.

The most attractive part of a woman to me is her brain. I pray that with the surgery behind you, your brain can be free from worry, and that you can fill it with more good, tranquil and beautiful thoughts.

Your family loves you, especially that bizarre Dutch guy. We are all pulling for you, and send healing thoughts, love and joy.”

Thank you, Survivor Brother. That’s exactly what I needed.

Staying Mentally, Physically, and Spiritually Healthy During Shelter-At-Home

As much of America (not enough, but we’re getting there) and the world at large continue to shelter-at-home, self (or mandatory) quarantine, and take other measures to flatten the Covid-19 curve (In epidemiology, the curve refers to the projected number of new cases over a period of time), we’re facing many new challenges. We’re worried about our finances, job security, food security and the supply chain, medical supplies, and the economy, of course. We’re worried about our families, friends, communities, and the long-term impact of this pandemic. We’re worried about our childrens’ education, which like most of the rest of societal norms, has been put on hold. We’re worried about how and when the pandemic will end, and what we can do to prepare for the next one.

There will be a next pandemic. It’s inevitable.

For many of us who are classified as non-essential workers, we have more time to worry as we remain isolated from friends, family, and other social supports. It’s the perfect storm for anxiety and depression to thrive, and it’s a problem. Maintaining mental well-being, as well as physical and spiritual, can be a struggle in these difficult times. But it is essential if all of us are going to get through this.

I’m fortunate to have access to Telehealth services – hell, let’s be real: I’m fortunate to have access to healthcare and coverage in this nation, something we should ALL HAVE. I’ve been receiving tips from my wonderful therapist (and my son’s therapist, too), and I’d love to share this advice with all y’all. I hope it helps.

Keep a Regular Schedule

Link to source.

Keeping a routine is beneficial for health and well-being. You don’t have to be super rigid about it – flexibility is key. For us, weekdays consist of a regular wakeup time at 8:00 a.m., a loose homeschool schedule, regular healthy meals, free time in the evening, and a regular bedtime. Small steps, but they are sanity savers in uncertain times. We don’t know what’s coming tomorrow in the wider world, but we know what we need to do for the hours in the day. This is especially good for children.

Tune Out The Noise – News and Social Media

Link to source.

The media is a double-edged sword and has been for a long time. It’s important to keep abreast of local, national, and international news in a time of crisis, but too much apocalyptic doomsday speculation, news of tragedy, talking heads arguing back and forth, and watching our leaders at their worst isn’t healthy. Social media is much the same. Take a break. My therapist suggested having a designated 30 minute to 1 hour slot for checking in with the news and “unplugging” for the rest of the day. News is one thing, but I’m a social media addict! I love FaceBook, Twitter, and Insta, and these tools can be useful in terms of feeling connected with people during the isolation period. But avoid fights, don’t use social media as a gateway for too much bad news coverage to seep in, and don’t fall into the rabbit hole of 3 hours in TikTok land. That’s just not healthy.

Healthy Eating and Exercise – Essentials of Self-Care

Link to source.

This one’s been a challenge for me – eating healthy is hard when you love to bake and have time. But there are no downsides to healthy eating and exercise, and many of us have time now! The Internet is full of amazing recipes, which is especially useful when you’re working with a limited supply of ingredients. Check out this site for tools to help you plan meals based on what’s in your fridge and pantry. If you’re having trouble feeding yourself or your family, check with your school system (MNPS is continuing weekday meal service for students and families), food banks (find one near you here), and for state and local programs in your area.

For exercise, something as simple as stretches, sit ups, jumping jacks, and leg lifts are always a good choice. I’m working on strength and flexibility to manage side effects of tamoxifen and prepare for my mastectomy, so yoga is my go-to. Yoga with Adrienne is my online go-to. Walking through your neighborhood (while maintaining social distancing) is another great option, as is yard work, housework, and games like Just Dance and video game fitness options. Move your body several times a day in whatever way works for you.

Need to unwind? Warm baths and showers with extra pampering time are fantastic. Deep condition your hair, massage your scalp, practice mindfulness as you take care of your body. Whatever spiritual path you follow, rituals work to calm, heal, and comfort in difficult times. Use them, but do it safely. No mass gatherings!

Find Connections When and Where You Can

Remember when I said to avoid social media? While avoiding the negativity on social media is a great thing, using it as a tool to connect with people you cannot see in person is a beautiful thing. I’m appreciating all of the amazing talents on display in FaceBook, Twitter, and Insta videos, which is even more fun with people I know! Have an IM chat. Call a friend or family member. Use Zoom, Skype, or FaceTime if you’re so inclined and are willing to put on a bra (pants optional). Human connection, even for introverts like me, is essential.

You might consider creating content to share during quarantine. I’ve done my part with this dramatic reading of “Does It Fart” to educate and entertain the public with the subject of animal flatulence.

Don’t Drink, Sleep, or Work Too Much: Moderation

It’s tempting to use this shelter-at-home thing as an excuse to over indulge. If you’re drinking or using drugs to self-medicate, though, please stop! You’re risking your life, health, and emergency medical services are already strained due to the pandemic. Get help! You are important, you matter, and we can’t lose you!

Getting rest is a good thing, but too much sleep isn’t healthy. See above – keep a routine, including a normal sleep routine, for health and sanity.

It’s tempting to use this time to dig deep into work-related projects, as many of us feel the pressure to catch up, not get behind, and are worried about career and job security in this difficult time. But, as noted above, routine is key. Work, take regular breaks, and STOP each day. This is therapist-recommended!

Have fun and Be Weird

My photo – I’m the soure!

You’re at home with family, pets, or possibly on your own.

Embrace your weirdness and have fun with it!

In my house, we have Bob, the Halloween skeleton who we’ve decided is (a) not just for Halloween, (b) gender fluid, and (c) a being for all seasons. Bob likes to dress for the season, so he’s sporting one of my favorite sundresses, a lovely cap, and is striking a sassy pose with flowers. That’s my weird (one of them, anyway).

What’s yours?

Resources for pandemic: Ready.gov, Benefits.gov (resources for unemployment, healthcare coverage, food), GrantSpace.org (links to resources for bill pay assistance, grants, etc.)

DIY Therapy for A Geek

I’ve come to terms with the fact that I’m not done with breast cancer yet. But I don’t have to like it, and I don’t have to pretend that I’m entirely okay. I need help. Still in therapy, meeting with my care team on Thursday to come up with a game plan to get rid of this stupid little 6 mm bastard of a tumor, and then meeting with the plastic surgeon the following Monday to discuss Tits 3.0.

It’s a lot. What’s keeping me sane right now, aside from my family, Netflix Comedy Specials, and cat videos on Facebook, is my work. Y’all, I get to kill breast cancer cells ALL THE TIME in the lab. It’s so cathartic and gratifying. I wish with all my heart it was as easy to kill cancer cells in patients as it is in little plastic dishes. It’s not, but what we discover in little plastic dishes could eventually lead to the next cancer therapy.

The message is clear – DIE BITCH ASS CANCER CELLS!

My amazing student, who’s working with cancer cells that are similar to mine (hormone receptor positive), saved a plate for me. Not only did she save a plate, she decorated it with an adorkable “destroy me” tag that made me giggle snort.

I adore her.

Naturally, we decided to video me killing cancer cells.

Videography credit Kalin Wilson

As noted in the video, please for the love of your health, do NOT drink hydrogen peroxide to kill you tumor. It’s #toxic and not in a way that will target your cancer. But, as you can (hopefully) see, it stresses out the cells in the dish, overwhelming their defenses against oxidative stress to the point of death.

But, having the power to kill tumor cells that are similar to those growing in my body helped me on a psychological level. And if any patients or survivors want me to kill cancer cells like yours in the lab, I’m down! Hit me up. I can use chemo drugs, approved and experimental cancer drugs, peroxide, detergents, soda (it totally works), you name it. Let’s get creative!

Scanxiety: My Left Boob Just Won’t *&^#ing Behave!

Warning: This post is full of swears. It’s been a total shit day.

Getting “normal” annual mammograms after breast cancer is nerve wracking. I get that. Literally. Today was my second routine mammogram after completing surgical and radiation treatments. What (I’d hoped) would be an hour long visit followed by an, “All clear! Go, and live happy,” turned into a 3 1/2 hour long ordeal that consisted of FOUR FUCKING IMAGING sessions, an ultrasound, and scheduling another biopsy.

This is fucking bullshit.

Link to source.

For those of you who’ve been there, done that, bought the T-shirt (that reads, “Of Course They’re Fake – The Real Ones Tried to Kill Me”), you get it. I’ve had several survivors in my circle offer support, well-wishes, and cat memes, and I’m grateful. For those of you who haven’t been there (and I hope you never are), let me give you some background. At the time of this blog post I’ve had:

Six biopsies (last time was a charm with the Big C)

Two lumpectomies (one to remove a benign papilloma and the other to remove cancer – followed by oncoplastic reconstruction involving a reduction and lift)

Implantation of TWO Savi Scout devices to mark my tumors (this was mammography assisted, meaning I was in fucking compression while two GINORMOUS needles the size of small screw drivers were stuck into my left boob and I actually saw the tip of one come out the other side)

Twenty-eight rounds of radiation on my left boob – crispy bacon, anyone?

And a partridge in a pear treeeeeeee!

Link to source.

You’d think that would be enough. Seriously. But, alas, not for me. Whenever I go in for routine checks, I get the extra imaging, the call backs, the ultrasounds, and the biopsies. My breast are pincushions. It’s not fun.

Today’s visit started out well enough. I went into the room with my lovely robe, wiped off the deodorant I’d put on (because I forgot that I wasn’t supposed to use any), flopped out one boob, then the other, let the nice nurse get to second base while positioning my boobs, had my (first) mammogram scans and returned to the waiting room. Aside from being a bit sore (the left boob, cancer boob, is harder than the right thanks to radiation and it’s pretty uncomfortable in the old squeezy squeezy machine), I was content. I texted the lab to tell them I hoped I’d be in soon and then enjoyed some Facebook and Twitter time while waiting. I also had in-room entertainment in the form of a brash and bawdy lady who was Skyping – loudly – and having the kind of inappropriate conversation that you kind of want to film because it’s disturbingly awesome and no one will believe you unless you record it. All in all, not too shabby.

Link to source.

Then, they called me back. Just need a few more images, they told me. Nothing to be concerned about. I groaned, but was still okay. Considering my normal experiences with mammograms, this was a drop in the boob bucket. I got squished, got sore, and was escorted back to the waiting room filled with other women in those high fashion robes you get when you have to get your boobies squished. My entertainment was gone, and I missed her terribly, but I was slightly more concerned with the passage of time.

I mean, I did have work to do.

They called me back again. This time, the nurse (BTW, they’re all wonderful and I don’t fault them for any of this) explained that they’d found a spot. It was of concern because they hadn’t seen it on my previous post-treatment scans. They hadn’t seen it, because apparently this time the nurse was so good that she got images closer to the chest wall and they were seeing new areas for the first time. On the one hand, go nurse! Great technique!

On the other hand, WTF is the spot? Is it something I should worry about? We don’t know how old/new it is because we haven’t seen it before. Seriously, I’m two years out. I shouldn’t have a recurrence.

They needed another set of scans to make sure it was real, especially since they’d seen it only in one image/plane. So, for the third time, back in the boob vise for a trip to fuck that hurts land.

Link to source.

I go back to the waiting room. And…I’m called back for – I shit you not – ANOTHER round of images. This time they let me stay in the room with the owie machine while I wait for the radiologist to have a peek. Shortly thereafter, they tell me, as I predicted by this point, it was ultrasound time!

I’ve had plenty of ultrasounds.

As is my standard practice, I asked if I could see the screen, explaining that I’m a breast cancer researcher. Yeah, I got breast cancer, too, the irony isn’t lost on me. Yes, I’ve become more passionate about my research and am getting into advocacy, too. Sure, I’d love to see the mammogram image of the spot in question. Interesting (i.e. I have no idea if what I’m seeing is bad or not – then again, neither does anyone else or I wouldn’t be here).

I flopped out my left boob, the one I’d called a pain in my ass during my 4th time in the booby squeeze machine (and made the nurse giggle snort), put my left hand over my head, got the ultrasound goo smeared over my bad boob, and then the nurse commenced with the scavenger hunt via wand. And she wanded. And she wanded. And she wanded.

Link to source.

My arm was getting a little numb, and I was a bit concerned that she wasn’t taking pictures, but I just chilled. Then, she told me she wasn’t sure anything she was seeing matched the spot on the mammogram. So she grabbed the radiologist, who came in, goo-ed me up, and wanded. And wanded. And wanded.

The radiologist laid it out for me. They’d seen this spot, which was uniform in shape, an oval, and was most likely nothing to be concerned about – fat necrosis, an artefact of scarring, or a benign lesion. Given that it was in my bad cancer boob, she recommended a biopsy. And since they couldn’t find it by ultrasound, I would need a mammogram guided biopsy.

That’s exactly as sucktastic as it sounds. I will be put in (terribly uncomfortable) mammogram compression and stay there while someone jabs a fucking biopsy needle into my boob. Yes, I’ll have lidocaine, but that’s not going to help with the squeezy squeezy or the HORROR!

Link to source.

And, while I wait 9 days for the biopsy and another 5-7 days for the results, I’ll be stressed out. This is the reality for survivors. We’re ALWAYS nervous with scans, and it’s compounded when extra examinations are needed. It’s terrifying. Yes, rationally I understand that the odds of finding another tumor are extremely low, but the fear is visceral and always there. I’m worried it always will be. Most days, I’m upbeat and snarkily positive, but not today.

Some days, the best you can do is just hope for better tomorrow.

Don’t Be A Hero – See A Therapist!

Living with cancer (even post diagnosis, treatment, and in remission, once you’ve had cancer, you’re always living with it) is weird. One minute I’m going about my day and not thinking about my body, my janky scars, and what’s left of my boobs (which I’m soooooooooo grateful to still have). Then, at strange, random moments, I’ll suddenly stop and think, “Fuck, I had cancer! I might still have cancer. What if it’s still there? What if it’s hiding out in my body and lurking, getting ready to say ‘Boo!’ two, five, ten, twenty years down the road?”

That shit will keep you up at night, give you panic attacks, make you hypervigilant (i.e. your lizard brain starts looking for threats around every corner), and make you tough to live with – even for you. I’d been down that road before with two bouts of postpartum depression (PPD) after the birth of each of my children. I recognized the symptoms once I slowed down and stopped using my favorite unhealthy coping mechanism – avoidance. Shortly after my diagnosis, I worked to the point of exhaustion in the lab, at home, and on my side gig, staying up late in the name of productivity and maximizing creativity, but I wasn’t fooling anyone.

I was fucking terrified.

After a year and a half of ups and downs – with a short stint of therapy before I learned I wouldn’t need chemotherapy – I gave myself a cosmic kick in the ass, acknowledged that I was not fine, and that I needed help. I’d tried using the Cognitive Behavioral Therapy (CBT) techniques I’d learned while in treatment for PPD, and I’ve been on anti-depressant medication for years (and make no apologies for it – if you can’t make your own neurotransmitters, store bought is fine), but I was still losing sleep and spending so much time worrying about if/when the cancer might come back that I wasn’t fully enjoying the life I was lucky to have.

I stopped, took a deep breath, and (finally) pondered what I’d been through with cancer – the shock and terror of the diagnosis; the fog of uncertainty while waiting for pathology reports, blood work; weighing the pros and cons of each surgical options; the needles for biopsies and implantation of SAVI SCOUT devices; waking up to a new body after surgery; finding out I had a positive lymph node; the burn of that tender healing flesh during and after radiation therapy; the indignities of hormone suppression therapy; loss of time with family, loss of work, loss of my life as I knew it and coming to terms with a new life.

I was alive, I’d been able to skip chemotherapy, and my prognosis was great, and yet, I was still broken. Looking at the list from above, it seems like a no-brainer. Of COURSE I was broken. But my biggest blindspot was and is me. It took a while, but I finally understood that I couldn’t process this on my own. I needed help so I could be the best version of myself for my family, my friends, my colleagues, my community, and myself.

So I got myself back in therapy, got a refresher on CBT along with adding mindfulness meditation, breathing exercises beyond the standard inhale for four beats and exhale for four beats to stave off anxiety (inhaling for four beats and exhaling for seven worked wonders for my sleep cycle), and the COOOLEST of all new (to me) techniques – postponed worrying! This has been a game-changer for me. I’m a scheduler – working mom with two side gigs and a husband who’s out of town half the week. I’m also a worrier. The simple act of taking time to sit down and devote my attention to my worries (writing them down and, using CBT techniques, identifying and fighting cognitive distortions) for a set amount of time has helped me NOT dwell on those worries for the rest of the day.

There are no downsides to taking care of your mental health, and plenty of benefits. The best part? In addition to helping you live your best, quality life, taking care of your mental health can be beneficial to outcomes like decreased recurrence and longer survival. References here and here.

Will there still be hard days? Absolutely. And it’s okay to go down into the well of despair. What therapy can do is give you the tools you need to climb out of that well and get back to your regularly scheduled life.

Looking for mental health care resources, or maybe support groups? Here are some places to start: American Cancer Society, American Association for Cancer Research, Susan G. Komen, Cancer Support Helpline. Gilda’s Club is also a fantastic resource for cancer patients, survivors, and their families!

Special note – this post is by no means an endorsement of “the power of positive thinking” and toxic positivity (that’s a thing – people who tell you to just shut out natural, negative emotions associated with trauma are dickwagons and you should walk away from them. You have to process your emotions in a healthy way).