It’s Not Just Broken, it’s Fractured

When I first learned of my diagnosis, it was essential to my husband and me that we consider a cancer center that would offer cutting-edge research and clinical trials. We wanted to make sure that I would have every treatment option available. That’s why I am also a patient at Memorial Sloan Kettering. At my first meeting with my oncologist there, we discussed clinical trials. I had even asked if there was one I could get into immediately. That’s how important I felt they were. Now, I’m not as confident as I was then.

Research Matters

While I didn’t know a lot about cancer research, I knew that research would be my only hope to keep on living. I counted on whatever clinicians were currently working on would be FDA approved and for my specific pathology before I exhausted my options. In the beginning, doctors told me I might have 2-3 yrs with the current standard of treatment. I wanted longer – a lot longer. I wasn’t going to accept what was “my fate,” and I became a vocal advocate for metastatic research. I was disgusted with how little money was going to metastatic breast cancer research. Large non-profits known for bringing awareness to breast cancer were mainly focused on preventing and treating early-stage disease. That’s great, but where does that leave me and others like me? It left us forgotten and ignored. We were the misfit toys on the island far out at sea.

After all, we are dying, and research typically moves at a snail’s pace. Doctors were treating us and keeping us as comfortable as possible. Another organization bluntly stated that metastatic breast cancer is just too complicated for research to focus on. Prevention was the key to save future generations, and we should accept that because it was too late for us. Whelp, the joke is on them. Shortly after my diagnosis, in 2014/2015, the first CDK4/6 inhibitor was on the market. Ibrance was the game-changer for estrogen-driven breast cancer. Maybe research wasn’t as slow as I thought. Little did I know.

There Is A Process

Over the last eight years, I have had extensive education in all things MBC. If one wants to create change, one must learn all about what needs to be changed. What I learned was disturbing. Clinical trials are a complicated process. There are four main phases each new drug must go through before getting acceptance from the FDA. Here is the cliff notes version for those that aren’t familiar with them. 

 Phase 1 is for figuring out what dosage is enough without being toxic and whether or not the drug effectively treats cancer in humans.

Phase 2 takes that dosage Phase 1 resulted in and monitors the drug’s safety and possibly pair it with existing drugs. 

Phase 3 tests against the current standard of care. Patients are usually randomized, so clinicians can assess patients by which group they are in. 

Phase 4 tests drugs that the FDA approves. These people are monitored to get better data on side effects previously seen in earlier phases. 

This entire process can take YEARS—five to ten years in some cases. 

Before ANY of that can happen, clinicians need people to qualify for the trials. It’s not just a matter of identifying people with a particular kind of illness. If it were, every clinical trial would be full. Patients must meet a laundry list of qualifications & parameters set by drug companies. The number of inclusionary criteria can be (and usually are) in the double digits. There are also exclusionary criteria that can deem you as not acceptable. That list can be just as long or longer, including previous biologic (cytotoxic) chemotherapy, having brain mets, prior radiation, etc. Scans have to be done, forms have to be filled out, and patients must adhere to a washout period. Patients can not have any trace of treatment drugs in their system before starting a trial. However, this “period” can be as long as six weeks or, in some cases, even longer. Think about that for a moment. Do you know how fast metastatic cancer can progress in six weeks? When the cancer is already active, not being on any treatment can make it progress exponentially quicker. Some patients die during this washout period. Next time you hear there aren’t enough people for clinical trials, remember that washout period.

What I find unacceptable is when clinical trial parameters don’t/won’t make reasonable accommodations for patients who have common and real-world contraindications because “it’s how other locations are doing it.” Even something as simple as how the stability of disease is measured can add another layer of anxiety to a patient participating in a clinical trial. Imagine a patient whose PET scans have previously been monitored due to a common iodine allergy to CT dye unable to have contrast in scan required to monitor the patient in the study. The only way they will monitor if the trial drug is working is with a CT WITHOUT contrast. PET scans are not allowed because the other locations/countries involved don’t do PET scans. Having a scan without contrast is similar to being in a room with the lights off and trying to get around. Something is bound to be overlooked. Even things as simple as blood work for the trial can require the patient to travel to the trial’s location weekly, or in some cases even more, JUST to get a basic CBC Blood test that is common enough to be run at home. What could be a local trip now requires commuter patients to potentially drive hours or find a flight to have a basic lab draw. Sure it’s good and convenient for the trial, but it can be utterly prohibitive for the patients, even if it’s their last hope.

The High Cost of Trials

Not all trials are local to where patients live. They often require regular travel, extended stays in the city the clinical trial is in, which means money for food. The clinical trial doesn’t always cover all of these expenses, so there is a component of financial toxicity that can be very overwhelming on top of everything else. Hotels haven’t gotten cheaper during the pandemic. Many of the free or reduced lodging programs through major cancer centers have stopped during the pandemic making it nearly impossible to find free or deeply discounted lodging for the patient. You would think by now we would be in a place where people could participate in a trial from their home base and have doctors communicate with each other. 

So, what if you’re in a trial that’s located at a different hospital? Who is responsible for your care above and beyond the clinical trial? If you develop a problem while you’re home, do you go to your doctor? I would assume it to be yes. I found that it’s not that simple. Clinical trials can complicate things. If you need a medication for a separate issue, will it kick you out of the clinical trial? Maybe.

In one situation, a patient currently in a clinical trial has all but been dropped by her local medical team. When she called her oncologist about a new infection that is not a side effect of the trial, her doctor told her to let the people overseeing the clinical trial know or go to urgent care. As far as they are concerned, she’s now under the care of the clinical trial 4 hrs away. The clinical trial folks instruct her to see her regular doctors. Palliative care has all but been stripped from her. Imagine having breathing issues with oxygen levels that don’t even reach in the ’90s, and NO ONE is monitoring you. She’s now in cancer limbo. You’d be OK with that. No, no, you would not.

Now when I hear there’s “not enough people for clinical trials,” I think, no shit. Why would anyone enroll? The burden on us patients is too high a cost -financially, physically, and emotionally. It outweighs the benefits. Becoming a human hot potato tossed back and forth between doctors while they cry “not it” is very unappealing.

It’s not a secret that the clinical trial process is broken. Those involved in advocacy have been trying to make changes with clinical trials – making them more inclusionary, basing the washout period on the most recent drug the patient has been on (they don’t require the same amount of time to leave the body). From my perspective, it’s not only broken; it’s fractured. In order to remedy this, drug companies must make clinical trials easier on the patients they need. After all – the goal is to help extend the lives of people, right? Maybe by allowing for basic accommodations, we can reiterate that the data points in studies all have faces, families, and stories that shouldn’t include extra barriers beyond their diagnosis to survive. The following MUST be part of the clinical trial protocol:

  • Provide a clear understanding of the financial toxicity in and outside the clinic to participate in the trial and were to apply for grants or assistance if the clinical trial doesn’t help pay these costs.
  • Make reasonable testing accommodations. 
  • Regular communication between the patient’s medical team to ensure proper care is provided.
  • Have palliative care continue or be available to those that need it.
  • Assign a navigator that patients can address questions or concerns.

I still support funding research; howthefuckever, something has to give for the clinical trials themselves. We are people who are sick that want more time. We do not need to be spending the extra time we are gaining, falling into crippling debt, or pushing to have our humanity acknowledged. 

We deserve better.

Wildfire Magazine Shines a Light on Changemakers

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. 

The Couch That Love Built

If you’re a regular reader here, you know I’ve talked about The Cancer Couch, and it’s founder, Rebecca Timlin-Scalara. In case a refresher is needed, Rebecca started a nonprofit as she was recovering from treatments she was receiving for breast cancer. The irony in her choosing the name of her foundation comes from the fact that she, a neuropsychologist, literally went from one side of the couch to the other.

Rebecca initially was told she had Stage 4, metastatic breast cancer, but after having additional scans, it was determined she was Stage 3C. When her doctor told her she had a chance at a cure (being 3C), she decided then and there she had to do something about the fact that MBC is woefully underfunded. She wasn’t going to leave those of us dying behind.

Rebecca and I met and began working together in the summer of 2016. We had a “small world” family connection that Italian families are known for. It wouldn’t surprise me if our “ancestries DNA” held similar leaves on some of the same branches of our family trees too but I digress.

Rebecca could hustle. She formed relationships with just about everyone she met and if there was a way to partner up to raise money for her foundation, which meant MBC research – she made it happen. Fun Fact: There are only two organizations that are focused 100% on MBC research; however, every single donation gets matched, which makes volunteer-run TCCF unique. That’s right – MATCHED – Dollar for Dollar.

Cancer is a sonofabitch. It doesn’t care who you are; it doesn’t discriminate. A sobering statistic I have mentioned here before is that up to 30% of those successfully treated for breast cancer will recur with metastatic disease. It may not happen immediately; it could be up to 15-20 yrs later. When Rebecca found out hers had spread, it didn’t slow her down. As I write this TCCF has funded over 3 Million Dollars for MBC Research.

This incredible woman, this champion for metastatic breast cancer patients, my friend, died on Saturday, December 14th. Please keep Rebecca’s family and friends; especially her husband and children during this unimaginable time.

Below is Rebecca’s obituary, as written by her husband, Tom. As much as I hate that it had to be written, it’s the most magnificent tribute that encompasses the essence of who she was.

Dr. Rebecca M. Timlin Scalera
August 20, 1972 – December 14, 2019

The Radiant:

A Radiant Mother, Wife, Daughter, Sister, Aunt, Friend, Neuropsychologist, Breast Cancer Activist, Division 1 Athlete, Coach, Captain, Comedienne, Traveler and Writer. A True Force of Nature and A Whole-Hearted Lover of Everybody and Everything in this Life.

The Angels:

A beautiful blue-eyed angel was made on December 14, 2019. Dr. Rebecca (Reb) Timlin Scalera was the wife of the incredibly lucky (she wanted me to write that), Tom Scalera, and the loving mother of her amazing children on this earth, Bella and Luca, that are a daily reflection of their Mom’s radiant energy, beauty, and intense love for them. We are all comforted to know that she will now be with our heavenly son, Angel.

The Magical Days:

Reb was born August 20, 1972 and grew up in Windsor Connecticut. But there was even more family magic on that date…33 Years later she birthed her beautiful cosmic twin, Bella, on the very same day and (wait for it)…the same minute. It is a day of miracles in our family and it shows how uniquely and freakishly strong Reb’s connections have always been and will always be to her children. She also continues to have a life-long connection to her special childhood friends from Windsor that have been faithful traveling companions through every stage of life with her.

The Smarty Pants:

Reb was insanely intelligent, that rare combination of IQ and EQ – yes she had it all and she had the lighting-quick processing speed to use it. So not only did Miss Smarty pants get a B.A. in Psychology from Fairfield University, she went on to Fordham University to get her Ph.D. in Counseling Psychology and then added on a Professional Diploma in School Psychology from Fordham University for good measure. She made neuropsychology her career choice and ultimately became a partner at Neuropsychology Consultants in Norwalk, CT because her spirit could not bear to see anyone in pain (store that one for later). Reb was born inside out, her soul was on the outside, you could immediately feel it when you were in her presence. A brutal 4 year war with Breast Cancer ravaged her body, but her Mind and Soul just grew stronger and more magnificent every day. She lived a daily life of passionate enjoyment – to Reb everything was amazing. And while she did not have very much time on this earth in this form, she enjoyed it twice as long and twice as hard as anyone I know.

The FU:

Going back to our beginning, it was at a Fairfield University beach party (just 10 houses away from the dream home we just built), that we first met and fell in love. She said she was hit by a lightning bolt and immediately knew we were soul-mates (remember soul on the outside). Some of her other amazing memories and accomplishments from the Fairfield University days included being named All Scholar Athlete on the Women’s Division 1 Soccer Team, experiencing a life changing semester abroad in Spain, engaging in a decent amount of partying and forging life-long friendships and connections within the amazing Fairfield University Community.

The Couch:

So after a dream vacation in August 2015, Reb was diagnosed with Breast Cancer and the long battle officially started. She, like so many others, thought that all breast cancer is curable, but she quickly learned that it is not. It is not! So she directed her energy, passion and intellect to increase funding for cutting edge research for Metastatic Breast Cancer – the one that ultimately takes 42,000 lives a year in the US alone. So the former psychologist started the 100% volunteer managed Cancer Couch Foundation from her own recovery couch. In just 4 short years, the Cancer Couch has funded over $3 million in research at Dana Farber and Memorial Sloan Kettering. She proudly represented the Foundation on ESPN, the NBC Today Show and countless other news and radio broadcasts. The Foundation also hosted 4 of the best party fundraisers in Fairfield County – Reb made sure that everyone had a crazy blast while combating this deadly disease – that’s how she rolled. While there is much more work still to be done, we are so very thankful to the thousands of supporters of the Couch’s mission all around the world.

The Reb:

Rebecca constantly amazed the many, many people who loved her with her boundless energy, optimism, smarts, and thoughtfulness. She made devoted friends in every stage of life, and kept them, always one to reach out and bring people together with great warmth, humor and enthusiasm. She had many interests and talents that she pursued passionately, often inspiring those around her to pursue them as well. Among her many loves were the sea (she was the Lady S Captain, not me), the beach, traveling, writing, blogging, raising millions, live music, reading, tons of movie popcorn, watching shows and snuggling. She was notoriously the last one to the party and the last one to leave – she never wanted to fun to stop. As exciting and accomplished as she was, there was no one better in the world to do absolutely nothing with.

The Family:

Reb is survived by the incredible Tom and Rosalie Timlin, her three indomitable siblings: Vivian Ciampi, Sean Timlin, Paula Cunningham; her 4 super-cool siblings-in-law: Marc Ciampi, Jim Cunningham and Nicholas Vasquez Scalera and Carolyn Vasquez Scalera. She will remain a constant presence in the lives of her 8 adorable nieces and nephews: Zachary, Carina and Colby Ciampi; James, Makayla, Thomas and Kendall Cunningham; Briana Timlin and Amelie Scalera. The Family would like to thank the countless, nurses, doctors and support staff that lovingly cared for her and often received a personalized rap song as a gift of her appreciation (yes that really happened often). And we’d like to extend a very special thank you to Dr. Andy Seidman, Reb’s Rock-star oncologist and trusted friend and her dream team of researchers at Sloan led by Dr. Sarat Chandarlapaty and at Dana by Dr. Nikhil Wagle. The Family would also like to thank the extensive and highly capable network of family and friends for the countless acts of kindness and love shown to us all in so many ways.

Those wishing to make a donation in her memory to her foundation can click HERE.

Rebecca established an Angel Fund at The Pluta Cancer Center in Rochester, NY (where I go locally) for metastatic breast cancer patients in financial need. Those who would like to make a donation in Rebecca’s memory to that fund can click the link above and scroll to the bottom of the page until you see my photo.

Sometimes It Takes A Village

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.

IMG_5585

 

brcastrong
BRCAStrong#UnBRCAble

 

San Antonio & Setting Goals

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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