Community

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

Sometimes It Takes A Village

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There are certain times in our lives when we can’t do it all on our own. It can be very frightening, especially when your life is literally on the line. What started out as dire situation last Friday afternoon, for my friend Amy, ended up being a testament to how people can pull together and help their fellow man (or in this case – WOman) simply because their story was shared through social networks.

Here’s what happened…..

Last Friday afternoon, I received a text from my friend (and fellow MBC sister from another mister) Amy. After a bit of texting/venting, the situation was this: Amy had been accepted into a clinical trial at Weil Cornell in Manhattan – which is fantastic because Amy’s breast cancer had now progressed to her brain and there are few if ANY clinical trials for cancer patients with metastisis to the brain, let alone trials specifically for MBC patients with brain metastisis – so this was a BIG fucking deal. The issue at hand was that she had just been informed she had to return to Cornell that following Monday (2 days) to begin the trial and she had to stay for five days.

It’s December. It’s the week before Christmas. In Manhattan. Do the math.

:Breathe:

Amy had already called the American Cancer Society. The Hope Lodge was not an option as they needed more than 2 days notice & they were full. That’s helpful, right? I suggested she call back and inquire about another program they have called Keys of Hope and while she did that I would check on a ‘few things’. I may have lied – a little. What I actually did was the only thing that I felt was going to give Amy the best possible chance of finding someone anyone that had a suggestion, a link, an idea or something:  I made a video and posted it on Facebook. If you know me – really know me – you’d know that I am not comfortable making ‘impromtu videos’ for social media. Public speaking and interviews, sure – IF I am prepared. Off the cuff videos, not so much. But this was important and not about my comfort level. ugh  video

It wasn’t long before friends were sharing the video on their pages, in groups, and tagging friends that might be able to offer suggestions or even help. As much as social media can be a detriment it can also bring out the very best in people – all working together because someone is in need. This was one of those times.

Angels Do Live Among Us

Not thirty minutes after posting my plea for help, I was put in touch with Tracy Milgram thru METUP Board member, Abigail Johnston. Tracy is the founder of BRCAstrong,  a non-profit organization that supports and educates Previvors and Survivors. Tracy’s organization recently partnered with PALS – Patient Airlift Services. PALS, is a non-profit that provides free air transportation to medical treatments/appointments to those patients in need. Tracy was confident that through PALS, Amy would be able to get transportation to her clinical trial and have one less thing to worry about.

WHAT?? I immediately started texting Amy while I was messaging Tracy on Facebook. Multi-tasking! Soon Amy was talking to Tracy and working out the details of her flight.

I went back to Facebook to check notifications, comments and suggestions about lodging for Amy. Everyone was being so helpful. There were attachments with lists and websites, names of other people to contact AND THEN…….

Almost at the same time, I received a message via Facebook and a text. The text was telling me that someone was trying to reach me and the message on Facebook was from that person trying to reach me asking me to call her. I called Sara (I am changing her name per her request). Sara is someone I know in real life. I met her this past summer. I can’t say enough about her – love her to pieces. As Sara and I were talking she told me she saw the video and she couldn’t not help. I told her Amy has transportation secured thanks to Tracy and PALS and the only thing we were working on was lodging.

Then Sara said this…..

I want to pay for Amy’s hotel

OHMYGOD!! I cried. Amy was all set. She was going to be at her clinical trial on Monday.

I hung up with Sara and called Amy. I will never forget the sound of joy in Amy’s voice when I told Amy she had to call Sara immediately and why. It was a combination of surprise, tears, relief and laughter. It was the absolute best sound ever.

There was only one thing left to do.  ugh.

(And now you know why I don’t make videos. Can you say “Hot Mess”??)

It was a long afternoon. It was a stressful afternoon. But it is true, sometimes it does take a village. On December 14th, that village rallied for Amy and took care of one of it’s own. I am happy to report that Amy has spent this past week in NYC getting the treatment she needs in the clinical trial that will eliminate the little bastards in her brain and keep them from returning.

Thank you to everyone that shared the initial video, tagged friends, sent me messages and offered suggestions. This is the power of community and how the connections we make, the people we meet; we never know how important they may become or how big of a role each of us could play in one another’s lives. Those of us with metastatic cancer knows how much time we have; using that time to help where you can and work together is so much more fulfilling. I especially want to express a heartfelt, huge thank you to: Tracy Milgram, BRCAStrong, PALS and Sara or as I collectively call them angles on earth without whom none of this would have been possible. 

My dearest friend Amy ~ I love you so much and when you get back home….                   you owe me lunch.

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brcastrong
BRCAStrong – #UnBRCAble

 

San Antonio & Setting Goals

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I have so many thoughts swirling around. It’s been a minute since I’ve written. Every time I’ve tried to carve out time, something else takes my attention.

When I started writing this I was on a plane. In the middle seat. I loathe the middle seat. I have claustrophobia issues. I was on my way home from a week in San Antonio; attending The San Antonio Breast Cancer Symposium. I had been trying to get there for 2 years. This conference is the largest conference dedicated to all things Breast Cancer. Researchers and Oncologists from 90 countries present results of trials, studies, data they’ve worked and collaborated on. You name it – they were probably talking about it. It’s basically a “who’s who” in the Breast Cancer space. Five days – from 7am until 10pm.

This being my first year at SABCS, it was also my first time representing METUP in my official capacity as President at a conference. METUP has been going to this conference for the last three years. Each year included a silent protest where signs are held outside the most attended session of the conference which happens to be where the Komen Research Award winners are presenting. This year would be no different.

The signs always conveyed a clear and concise message directed at researchers. Previous messages were: “Cancer Doesn’t Discriminate Neither Should You” “Help Us Help You” “Metastatic Research Now” “Silence = Death”

This year we had two messages. Our signs had a message on both sides: “We Need Years, Not Months” “Do What’s Right, Not What’s Easy”

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METUP Protest – SABCS18

We received so much positive reinforcement & feedback. We even had one person join in and hold a sign with us. Afterwards, I was told by one person they disagreed in our choice of timing for our protest. That’s why it’s called a protest. History has shown, however, that change doesn’t come from waiting for it to happen. Change occurs when you take action to make it so. It’s especially important when my life is on the line – even yours.

I’m extremely proud of what METUP has accomplished since I’ve come back to the organization. We held our 4th and the most successful Die-In in Washington D. C. this past October. We’ve added a Diversity Coordinator & a Compliance Coordinator to our team and we closed the year with a protest that grabbed the attention of some impressive people in the medical community.

Aside from all the fascinating information learned from brilliant individuals from all over the globe, it’s the best opportunity to meet “IRL” and catch up with the friends you’ve made on social media platforms – most notably Twitter. (#BCSM shout out!)

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#BCSM Live

Many great connections were made. Constructive dialogue took place all week; with the anticipation of fostering new ideas into action.

As a new advocate to the symposium and not a grant recipient from the Alamo Foundation, there was a glaring absence in access to information. If you want to attend general sessions, exhibits or posters – all of that information is clearly available either online or in a downloadable app. What’s not available, is information for sessions designed specifically for patient advocates, “hot topics” or panels. Invitations that come via email don’t go to all patient advocates. It all ends up being conveyed by word of mouth once we’re there. IF we’re lucky.

So, San Antonio Breast Cancer Symposium – if you’re reading this, I have some suggestions to make the conference more “Patient Advocate Friendly”:

  1.  Update the Advocate button on your app with actual information about conference events instead of the Advocate webpage which is useless.

  2.  Have a room for Patient Advocates where we can take a breather if we need to. These are long days. Metastatic Patients, Patients out of treatment get tired and we don’t all stay close by. Finding a place to sit is very challenging. This would be so helpful. Especially if the shuttle busses aren’t going to run all day.

  3.  If you’re going to send email invites that are for ALL patient advocates – send them to everyone. Don’t send them to some and ask them to finish your job by “passing them on” it’s not always going to happen. People will feel left out.

  4.  Currently, there are Hot Topic dinner meetings, which is great. Perhaps, add Lunch & Learn topics (in that Advocacy Lounge I suggested in #2) for those that just can’t stay until 5/6pm.

Just my two and half cents. Think about it.

It was extremely bittersweet at the end of the week. Saying goodbye to friends always sucks after spending so much meaningful time together. It’s much harder when you know the following year, not everyone will be returning and (not to be a wet blanket) it could very well be me. With that in mind, your friends hug you a little harder and a little longer and you both cry a little; while insisting each of you will be back to do the whole thing again next year. Hopefully. Maybe.

METUP has some lofty goals for 2019 that will be sure to raise eyebrows and get some attention but with our team, a growing base of volunteers and a lot of fundraising, nothing is impossible.

“You may never know what results come of your actions, but if you do nothing, there will be no results.”
― Mahatma Gandhi

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