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Let’s Talk About Labels

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It seems as though we are obsessed with slapping a label on things associated with illnesses. These labels, regardless of stage, can be isolating to some extent, even off-putting. Other people closely identify with them.

I will be the first person to tell you that cancer is difficult. One size does not fit all, and living through it can fundamentally change a person. While it makes perfect sense to want to celebrate being done with it all and putting it in the review mirror, is it essential to identify with a specific label that constantly reminds you of that experience? And what happens if cancer returns? Does “survivor” still resonate?

So, when did this start, and why has it changed over the years to incorporate a whole month and a specific day dedicated to survivors & survivorship?

To Be Or Not To Be

The term “cancer survivor” was introduced by a US physician Fitzhugh Mullan which appeared in New England Journal of Medicine in 1985. He suggested that survivors included people from diagnosis to the end of life. Distinguishing them from others with a worse prognosis.

Margaret I Fitch, RN, Ph.D, Editor in Chief, Canadian Oncology Nursing Journal wrote an article entitled “Take Care When you use the word survivor in 2019. Fitch acknowledges that there are several ways in which to define the word survivor and that none are universally accepted.

“The word itself likely grew out of the declaration of ‘the war on cancer’, and is connected with a notion of ‘winning a battle’

Margaret Fitch, RN, PhD

Additionally, a small study was conducted in the UK focused on 20 young women (between 18 & 44 yrs of age) that were 1 – 10 yrs post diagnosis. The study acknowledges 23 previous studies that explored how individuals who have had cancer view the word survivor.

The conclusion of this particular study was not unlike the others in that 

“…not all individuals living beyond cancer identify as survivors and that this language may indeed be alienating and harmful for the well‐being of many”

Let’s Try Something New

It’s clear the term survivor does not resonate with everyone who has had a lived experience with cancer. Even those who are no evidence of disease years after completing successful treatment. So, why is it still used? Why can’t we adopt something new that doesn’t alienate anyone while being truthful to everyone’s experiences?

I challenge everyone to stop using survivor and instead say: “lived with” or “living with” cancer. Cancer isn’t who we were or what we are. It’s something that, for whatever reason, happened. W are all doing the best we can to live through or with it.

How do you feel about the term survivor? Let me know in the comments.

Dear Advocacy, It’s Not You; It’s Me

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At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.

I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.

I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.

Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.

It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”

In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.

I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.

Miss Minnie in charge of the gender reveal!

Wildfire Magazine Shines a Light on Changemakers

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Wildfire Magazine is the very first magazine by and for young women with breast cancer. Editor April Stearns published their February/March issue this past Saturday, February 1st. Each issue comes with a different theme as well as their regular issue features such as Reader Stories, Yoga & Recipes, and Tell Your Story. This issue shines a spotlight on the Changemakers within the breast cancer arena. These are women who have realized an unmet need through their individual cancer experiences and are doing some incredible things about it. They tell their story in this issue in their own words.

Rebecca Timlin-Scalera was one of the chosen Changemakers to be featured in this issue. Unfortunately, she passed before she was able to write her story. It was my great privilege to honor Rebecca in this issue. I wanted the focus of my piece to highlight how hands-on Rebecca was running The Cancer Couch. If you would like to read the entire issue, you can get a digital or print copy HERE.  Subscription options can be found HERE.

 

Remembering Rebecca

 

It is so easy to get pulled down into the yuck that surrounds you when the words “it’s cancer” are said to you. I should say it’s so easy to stay there when pulled down into it. Metastatic cancer is a whole other elephant (see what I did there?), and it’s even harder to pull yourself out of the yuck when facing that diagnosis. I know very few people that have glanced at the yuck, said, ‘Oh hell no!’ and went on to do what no other volunteer patient run non-profit has ever done for metastatic breast cancer (MBC) research.

The Cancer Couch

It sounds like an odd name for a metastatic breast cancer non-profit: The Cancer Couch Foundation. The irony wasn’t lost; it makes perfect sense. Professionally, Dr. Rebecca Timlin-Scalera was a neuropsychologist. That conjures up images of patients lying on couches as they talk about their childhood. While Rebecca was recovering from the effects of chemo, she was where most folks hang out – on her couch. Rebecca went from sitting in front of the couch to recovering ON the couch.

Rebecca saw the need for change. She recognized that those who have breast cancer that metastasized, they would essentially be left behind due to the lack of necessary funding. Rebecca didn’t wish for change; she didn’t hope for change. Rebecca CREATED change. She did it all with grace, humor, and dignity.

The First Fundraiser

Rebecca created and organized her first fundraiser shortly after the foundation was an official 50c3 in 2016. An ingenious idea that involved teams of local school kids eating as much ice cream as possible in front of the local ice cream parlor. Teams were required to raise a minimum amount with an ambitious overall goal of $18K. The owner of Saugatuck Sweets generously donated the use of his store and staff for the event, while behind the scenes, the distributer donated all the ice cream. Over $20K had been raised that June afternoon. Due to its success, the Scoops Challenge is popular at other schools in different cities all over the country, with the funds raised going to metastatic breast cancer research.

The Cancer Beat

If a rock concert and a live auction had a baby, it would be The Cancer Beat. This gala benefit held in Rebecca’s home town of Fairfield, CT, is the party of the year. Musical guests have included: The English Beat, Howard Jones, G Love, and The Special Sauce and this past September The Wailers. I was excited to be there for the first annual Cancer Beat. I had no idea what to expect. In true Rebecca fashion, there was a blue couch (with the high heel shoes next to one end) where Rebecca was taking photos with each guest. We were all dressed in our rock star chic. While we all knew why we were there, how important it was to raise money for MBC research, the whole night was fun, exciting and, memorable. We all partied like we were rock stars.

Joining Talents

Rebecca made connections. She liked to work with other people and organizations. Begining in 2017, Rebecca enlisted the help of bloggers for a new partnership with New York-based marketing consultant, Shari Brooks, who’s mother Judy (an avid baker) died from MBC. Imagine raising money without selling, asking for, or collecting and money. Choose one of Judy’s recipes to bake and post a photo using the hashtag #BakeItHappen! Each shared and tagged photo raises money for MBC research. ($200K to date)

Her foundation joined together with Twisted Pink and Hope Scarves to create the Metastatic Breast Cancer Collective in 2017. Altogether they raised $60,000, which was matched, bringing the total to $1.2 Million. That money funded two specific projects, one in each of the labs supported by the Cancer Couch.

#Reason4FreezinMBC

This past spring, Rebecca introduced a viral challenge on The Today Show. Hundreds of people made videos of themselves, friends, and family eating anything cold – the catch? It had to be done hands-free. Not as easy as you’d think. Afterward, people uploaded the video with #Reason4FreezinMBC and encouraged others to do the same as well as donate to MBC research. In the first week of the challenge, $25K was raised.

One of Rebecca’s last public interviews was this past October. She was featured on ESPN’s Outside The Lines to talk about her foundation for Breast Cancer Awareness Month and her days as a D1 college soccer player!

From the Scoops Challenge, #Reason4FreezinMBC viral challenge, to their most significant annual event – The Cancer Beat, all of the fundraisers for the Cancer Couch raised thousands of dollars for MBC. Each year has been more successful than the last.

Educating the public was just as important to Rebecca. In every article, interview, podcast, or conversation where she shared her story, Rebecca had a way of making you want to hear more even if what she was saying was sad or didn’t have a happy ending. She was engaging and had a way of drawing you in.

So, where is the money going?

Two leading scientists working on the most promising research at the top cancer centers in the US were chosen. That kind of science requires big money. Big money is what they are getting due to Rebecca’s tenacity and the overwhelming support from her immediate family, her Fairfield family, and the community at large.

Sadly, Rebecca passed away this past December 2019. But also, at the end of 2019, a staggering 3M dollars went into those Cancer Couch Foundation selected labs dedicated to Metastatic Breast Cancer Research. Three groundbreaking papers have come from being funded by Rebecca’s foundation thus far. Rebecca’s legacy and the work of the Cancer Couch Foundation will live on.

“Some people want it to happen; some wish it would happen; others make it happen.”
– Michael Jordan

 

I lost track of the number of times I thanked April for thinking of me to write about the amazing accomplishments Rebecca made in such a painfully short time to help improve and lengthen the lives of those impacted by metastatic breast cancer. It was truly an honor. However, I would be remiss if I didn’t also acknowledge April Stearns and the Wildfire team for being significant changemakers in their own right. Not only does April produce a beautiful publication, but Wildfire also gives back. Since 2017, a portion of new and renewed subscriptions are donated to the Cancer Couch Foundation and Metavivor. 

Writers Block is Real

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Nine months. I have been relatively silent for the past nine months. Even now, as I begin, the words are difficult to find. So for record-keeping purposes today is Tuesday, November 26, 2019. It’s 2:16 PM.

The Circle of Life is a Never-Ending Tail-Spin

Death is a part of life, and over the last 6 yrs, I have experienced more of my fair share; a lot more. That part of my emotions should be numb like a hardened callous by now from being overworked. It would be SO much easier, but what is it they say? If it were easy, everyone would do it. I chose to get involved in advocacy, and in doing so, I’ve had the honor of meeting some fantastic people. Some were a significant part of my life, albeit a short time. I wouldn’t change that, but dammit, ENOUGH ALREADY!

My circle has gotten smaller. Partly for self-preservation, the other part from death. A small circle means the losses are much more challenging to overcome; to get one’s head back into the game. All I want to do is save my friends when they start to slip into the metastatic quicksand that’s trying to swallow them as their treatments stop working. It makes me furious that I can’t and feeling defeated that after everything I’ve been attempting to accomplish, participated in, I don’t see the needle moving. Not as fast as it should, as it needs to.

In Memory of Social Graces

Social media has become a dreadful place that I now avoid. When there aren’t posts of shitty news regarding someone’s health, others are doling out bad medical advice, or there will be hundreds of comments under posts for the intention of instigating a verbal beat down. The worst are self-righteous soapbox posts scolding everyone or instructing us how to act. HARDFUCKINGPASS.

This advocacy world I live in isn’t the same anymore. (Please take note: I specifically avoided the term “cancerland” because people don’t use it to reference the work that Champagne busted her ass for; it’s cheapened to sounds like a fucking amusement park). It used to be a place where we could all count on each other. When we had to rally the troops (virtually) – they came. No question. People just showed up. We had chat groups where we shared information and strategized. It’s different now; It makes me sad. The goal hasn’t changed. Our mission is the same. The atmosphere is more of a “too many cooks in the kitchen.” We all may not have always agreed, but there was a basic level of understanding. Now you can expect to be treated as an exiled pariah or begrudgingly called out in public. Issues don’t get handled by two people at that moment who disagree but are drawn out into lengthy grudges that people feel they have to gain strength in numbers like a schoolyard confrontation. It just leads to more animosity, divisiveness, and people getting canceled because they don’t fall in line with what one person’s idea of what this “community” should be.

There is no privacy or loyalty to those that are outside of individual social cliques (which often congregate in small private groups or chats) even to the point where advocates have been through character assassination publicly. Things they have asked to stay private have been spread outside of private groups (where people assume a false sense of safety and privacy) to enhance gossip and drama. And for what?

We used to have movie nights where, at a set time, we would watch a movie; we’d start it at the same time and hang. People who couldn’t get out of bed were still part of us, and it helped us remember why we were doing this, not for self-glory or fame, but to save the lives of people who became a community from our shared experience. Unfortunately, we aren’t a community anymore; we’re becoming only individuals. There are groups of friends and advocates, but they function much more like high school cliques with their relative queen bees who decide where they are focusing and can swiftly scold or cancel anyone who falls out of line. The vibe is no longer grown adults working together for a common goal, and it’s hurting all of us in the long run.

You Can’t Do It All – Stop Trying

When you find out your time has been significantly cut short, the desire to make an impact on the world becomes more important. You want to leave a legacy behind your family can be proud of. One problem with that is it’s impossible to do everything. I know, I tried. At one point, I had to step away from METUP, of which I am currently active again because trying to be everything to everyone in all of my advocacy roles became wearing. More importantly, be proud of what you hitch your wagon to or rather your name. If you’re keeping the things you’re doing off of your social media (and those things aren’t tied to a confidentiality agreement), maybe reconsider your choices. Otherwise, own your shit.

Advocacy isn’t about elevating yourself to be the lofty and look down at people who may not be doing things your way. Or filling your Facebook Friends List to the brim with people you’ve never met; it’s about representation and speaking up for yourself and using platforms whenever they are given to you to further your cause – not yourself. Advocacy isn’t about celebrity; it’s about philanthropy and making sure our collective voices are being heard.

While I’m sad and disheartened right now, I am thankful for the connections I have made; the people I know who are honestly great advocates. I don’t know if we will ever get back to where we were or if it’s even possible. I do know one thing, we would be a much bigger force if we could.

It’s now Wednesday, November 27, 2019, 12:13, PM.

Happy Thanksgiving