breast cancer awareness

The Couch That Love Built

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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.

The Best Alternative To Pinktober EVER

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As most of you know, this week began Breast Cancer Awareness Month. I’m quite sure many of you have already witnessed at least one display of pink products that have absolutely nothing to do with Breast Cancer or benefiting someone with Breast Cancer other than it’s pink. In fact, if you actually look at some of these products you can’t even find where the money will actually end up going, but I digress and this isn’t the point of this blog post.

I am about to share with you the most fun way to participate in Breast Cancer Awareness Month EVER – and it involves COOKIES & BAKED GOODS!!! Everything is better with cookies, am I right??

Some background….

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The Sisters & Their Mom Judy
Bake It Happen is a fundraising website that was created by two sisters, Shari & Stacy who lost their Mother to Metastatic Breast Cancer. This campaign honors Judy’s legacy who was a talented baker/cook while raising much needed funds for Breast Cancer Research. Now in it’s 5th year, the sisters have successfully achieved their goal of making this a national campaign and have raised do date, over $60,000 for Breast Cancer Research. This year, however, the recipient of the funds is The Cancer Couch Foundation.

The Cancer Couch Foundation holds a special place in my heart as I’ve collaborated with Founder, Rebecca Timlin-Scalara with previous events and my Son held one of her fundraiser’s at his High School last October that benefited her foundation.

Here’s how this works….

Go to the Bake It Happen website or if you’re super lazy just click here.  Sign up to get the available recipes and then check your email inbox. (You do NOT have to buy ANYTHING). Then, have fun baking the yummy treats!! When you’re all done do the following:

  • Take some pictures of your amazing baked goods – either hot out of the oven, while you’re eating them or serving them to your family
  • Post them online to the following Bake It Happen Social Media with the following hashtag or Email then directly!

 Facebook:      @ubakeithappen   #bakeithappen

 Instagram:     @bakeithappen00    #bakeithappen

 Email:              ubakeithappen@gmail.com

For every photo posted, $5 will be donated directly to The Cancer Couch Foundation and for those that don’t know 100% of that $5 goes directly to meaningful Metastatic Breast Cancer Research and the hospitals that the Foundation supports matches each donation so that $5 or (if you post FOUR photos) that $20 gets DOUBLED!!

It literally couldn’t be any easier. But – I’m about to make it easier for those that don’t like to bake or it’s just not your thing. Bake It Happen has a donate button on their site, so if you would rather just donate $5, $10 or whatever amount you’d like you are more than welcome to do that and your donation goes directly to The Cancer Couch Foundation thanks to the magic of the interwebs! You can click that button here.

I’m going to ask one TINY little thing – super tiny – since you’ll be posting or emailing these pictures anyway, if those of you that are participating would also tag me so I know that your yummy cookies came from came from this blog (@stickit2stage4 – it’s the same for Facebook and Instagram). I’ll also know who to ask for yummy treats from too!!! KIDDING!!! I’m just kidding!!!

So, this is your mission, if you choose to accept it and I hope that you do because homemade treats are absolutely better than a pink pen that will eventually run out of ink or pink pair of socks with even pinker ribbons.

Before You Post That Meme….

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​We’ve barely had time to dip our collective toe into September and the just like the Christmas decorations we see way ahead of schedule, it seems the Pink ooze that is October has already begun.

To be perfectly honest, I feel like asking for my high blood pressure meds back (that I finally got off of) until November arrives.

Breast cancer is the ONLY disease that is sexualized and trivialize. It’s the ONLY illness that is treated like a sorority, where you’re literally welcomed in by others. Do men go around wearing a jock on the outside of their clothes in the name of ‘awareness’ for testicular cancer? Do they wear a strap on to to bring awareness to the CAUSE of penile cancer? Nope…because it’s ridiculous.

So, why sexualize cancer of the breast? What’s the point of a cryptic Facebook post, really? How is a selfie going to help anyone in actual need? What is going without a bra truly going to do for anyone? And who is going to know you’re doing it unless you either go topless or wear a thin white t-shirt to show your bare breasts – which again is only sexualizing a deadly disease….a disease that kills 113 women in the U.S. every day. A disease that I will die from because we still don’t have a cure for.

Some of these ‘fun and games’ in the name of awareness even hijack the one and only day dedicated to the Breast Cancer that kills – Metastatic Breast Cancer Awareness Day  (October 13th). You’d think that out of 31 days MBC would get more than one day of recognition. After all 40,450 Men and Women will die in 2016 because of Metastatic Breast Cancer. Don’t they deserve more than one day?

I’ve been accused of being angry and insensitive because isn’t any awareness good for the cause? I make no apologies for my strong opinions about my emphatic objections to the way Breast Cancer has been reduced to a cute, sexy marketing campaign and not the serious and potentially deadly disease that kills so many YOUNG women as well as men every day/every year.

If raising awareness is important to you personally, it would seem to me that actually doing something that would have a direct impact on folks with Breast Cancer or helping to educate those that could benefit from it would be the better option than just choosing to do something that you could do any other day of the week.

The day I stop being angry and pissed off about how the public views and treats Breast Cancer will be the day the landscape changes or more realistically, the day I die from MetastaticBreast Cancer.

We Are Literally Dying For A Cure

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Originally posted on June 19, 2015: Reposted on 10/1/2020.

Before Cancer, my Twitter and Facebook feed was filled with friends complaining about the inconveniences in their life. People who got cut off in traffic, others spilled coffee on their clothes on the way to work, and many voicing displeasures about the weather being too hot or too cold.  Now there isn’t a day that goes by that I can say, “Wow, no one died today.”  There is always someone letting a group know of another life lost to Breast Cancer or a family member updating their loved one’s page, letting friends know they are finally at peace and no longer in pain. Each time there is news of a death, it’s devastating. Each time the consistent thought running through my mind is, “This didn’t have to happen.”

The numbers and statistics are staggering. Those of us in this life that is Metastatic Cancer know them all too well.  They aren’t numbers we makeup. They are fact.  As frustrating as these numbers are, what is even more frustrating is that there are people that don’t want to acknowledge or hear about Metastatic Breast Cancer. I get that talking about a terminal illness can be depressing but not talking about it and pretending it isn’t happening while men and women are dying every day is irresponsible.

There have been articles and news of possible new breakthroughs and treatments for specific Breast Cancer types, but we still keep dying. There are new trials, new drug combinations, but WE ARE DYING.  People keep participating in races and buying into the ‘Pink Propaganda,’ but WE . ARE . DYING.

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I feel like it’s time to take the gloves off and really rattle cages to make people hear us. It feels like our voices are just echoing into the abyss and not really heard. An upsetting statistic from the Metastatic Breast Cancer Alliance is that:

“7% of the 15 Billion invested into Breast Cancer research from 2000-2013 by the major government and non-profit funders in the United States and UK was spent on Metastatic funded research.”

Let that sink in, 7% for the 155,000 people in the US living with terminal Breast Cancer*. That’s part of the reason that 117 women & men die every single day.  Even medical researchers admit that there is a lack of funding, making it very hard for them to do their jobs.  Add to that, Senator John McCain (R-AZ) is offering an amendment to the National Defense Authorization Act (NDAA) on the Senate floor which would do irreparable damage to the Department of Defense Breast Cancer Research Program.  Many of us have been Tweeting and calling our local State Senators to implore them to vote against this amendment. Clearly, the US Government is also unaware of the staggering numbers of men and women dying every year.  Or maybe because it’s Breast Cancer. That it’s not looked upon as a serious matter.

It’s so frustrating when I try to educate or inform folks that of the truths and implications of what precisely a diagnosis of Breast Cancer really means and could mean for their future. It is most often met with denial and hostility. Women have been led to believe that Breast Cancer is the lesser of all other evils. Still, the cold hard truth is that ALL Breast Cancer is potentially terminal if it isn’t found early enough, and even when it is, there is up to a 30% chance that it will end up in an organ or bones when it becomes terminal. It’s criminal that women are not told this information at the time of diagnosis. Instead, women are force-fed information and brainwashed into thinking if they follow their surgery, chemo, and radiation (not necessarily in that order), they will be good as new.

10/1/2020 Update: Last month, on Twitter, I put out a thread of 5 tweets. In this thread, I ‘busted’ four popular breast cancer ‘myths’ (or what I like to call myths). Unsurprisingly, there were some unhappy people that disagreed. Not only did they disagree; they called ME angry and bitter. I am not shocked by these words at all. I have been called those and worse and I owned it. I was. I used to be. I was shocked that the women that came at me were metastatic breast cancer patients. This is not a joke. Even after five years, which is when this blog was originally written, there is still a great divide. There is an urgent need for factual and truthful education around breast cancer, all of its implications, and metastatic disease.

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There have been Social Media campaigns on Twitter and Facebook with hashtags to create noise and get people talking about Metastatic disease. They started out strong, and we were all excited to post till our fingers bled. But it isn’t enough.

Last week there was a video that came out by Holley Kitchen, a woman with Metastatic Breast Cancer. She had all the right statistics, pictures of her precious children and set it all to a fantastic song that everyone could relate to. It went viral. She got a lot of press and was even featured on Good Morning America. It was a huge step for those of us that are dying to be heard. But soon, the hype will quiet down, and Metastatic disease will once again fade into the background where everyone wants it to be.

10/01/2020 Update: Holley died from MBC on January 12, 2016. Seven months after she published her viral video. She was No Evidence of Disease when she made the video that is now part of her legacy.

Tonight I saw part of the movie, The Normal Heart. The funeral scene where the actor Jim Parson’s gives the eulogy resonated with me. Although it’s about the death of a man who had AIDS, the words ring true for those of us with Metastatic Breast Cancer:

“In Closing, I’m just going to say I’m mad. I’m fuckin’ mad.

I keep screaming inside: Why are they letting us die? Why is no one helping us?

And here is the truth – the answer – they just don’t like us.”

 

METUP

 

* Statistical facts have been updated to reflect the current numbers as of 10/1/2020.

A Little Bit of Everything

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Its been almost two weeks since I met with my local oncologist and we discussed my latest PET/CT scan. For the most part it was good news. Cancer is stable, however one thing that struck me and I brought it up with my Dr, is that I now have 5 liver ‘cysts’. I use the air quotes because I’ve had scans before with negative results only to find out something was missed. Significant something’s. So, my faith in scans being 100% accurate has wavered. Not only do I have 5 little bastards but the one that was first identified has grown to 3cm. Add to that the pain I’ve had in the area of my liver for almost a year now and my red flags are flying high.  My Dr assured me she would go back to the radiologist and ask for a second look.  My gut tells me to have the big one biopsied. I’m not the type of person to look for things to be wrong but I don’t want to wait another 6 months only to find out its really more metastasis. (Mental note to email Dr today).

For those of you that don’t know I have a Facebook page of the same name where my mission above all is to try to help change 30 yrs of ‘awareness brainwashing’ to a focus on research. I share facts, what other organizations that focus on metastatic breast cancer are doing, news regarding others living with cancer and of course updates on me. Some days I feel I’ll never get anywhere and that folks will continue to bow down to the pink ribbon and blindly purchase anything pink in the name of ‘awareness’.

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(Pic from an ad at a liquor store. I find this sexually exploitive and downright inappropriate)

But this week something wonderful happened.  I received an instant message from one of the women that follow my page and she thanked me. I almost fell over. She totally understood what I am trying to accomplish and why and she thanked me. Wow. How awesome. She even said to keep doing what I’m doing. I was blown away. I needed to hear that. I thanked Jordanna and told her how much I appreciated her kind words. And I meant it. I’m keeping that message probably forever.

Unfortunately, I’ve had an increase in pain in my ribs. Specifically where I had radiation to my 9th rib where I had a tumor. The PET did show thickening of soft tissue covering the sclerotic rib. It feels like its growing and that soon it’s going to poke thru the skin.

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That bump just under my shirt is what I’m talking about. If it gets any bigger I’m going to have to name it and charge it rent. Twisting, turning and touching it hurts. I almost wish the soft tissue could be scraped off.

Hubs and I have finalized our February recess vacation plans. We are driving to Orlando and visiting Universal studios, Sea World and Cape Canaveral. The boys are excited as am I. Today I will be buying tickets to go behind the scenes of the Antarctica exhibit at Sea World. 45 minutes of getting an up close and personal view of penguins!! I love penguins. Another item to cross off my bucket list. I cannot guarantee I won’t stuff one of those suckers down my shirt and leave with it. Y’all have bail money should I need it, right??

Well, its time for me to snuggle with my pup. She’s laying on my lap while I type and I could really use a nap. Until next time….remember:

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(Image borrowed from: http://www.cafepress.com/jellykins)