She May Be Gone But She Never Really Left Me

It’s almost been a year since I said goodbye to my hero. Tori was more than just my friend. She was like a sister even though she was young enough that she could have been my daughter. That was something we always joked about. In the short time Tori was in my life, we managed to create a lifetime of the best memories together.Wether it was sharing a Starbucks at a convention, letting our inner tequila monster out on a flight or making a video of the hilarious way Benedryl affected Tori there was always side-splitting laughter to the point of tears. It’s been challenging doing life without out daily phone calls.

The Last Bestie Selfie

Friends Are The Family We Choose

More than just being able to see me one last time. Tori wanted to make sure she connected three people she loved dearly. Dan, Elaine and me. We all had our own special friendship with her. Dan and Elaine knowing her longer than me but she had wanted us all to get together. Under different circumstances of course but Cancer waits for no one. I finally met the two people Tori always talked about in her hospice suite.

Dan was kind enough to scoop me up at the airport and bring me to where Tori was. I could see the pain in his eyes. He made me feel welcome – like family. I has already “met” Elain over FaceTime this past September but this was the first time we all were in the same room. It was oddly comforting being with them; an extension of Tori.

Me & Tori at Starbucks, San Antonio, TX

The Missing Scissors

Tori always said she would tell me she was still around after she was gone. She’s made good on her promise. At least, that’s my interpretation.

I have a nasty habit of trimming my bangs. It usually doesn’t end well. Tori has always strongly discouraged me from reaching for the scissors. Well, she fixed my wagon the last time I went for them. They . have . vanished. I know she’s behind it. I kept them in the same spot. I used them in the same place. There is no other reasonable explanation. Now I look like Cousin It from the Adams Family when my hair is down.

There’s also the Ohio State hooded sweatshirt we found in a spot that was not accessible to the public. Don’t tell me that’s a coincidence. Ohio State is her alma mater, and she was a HUGE fan of their football team.

I Know She Hears Me

It may sound odd, but I talk to Tori. Not always out loud, and I don’t carry on a conversation or anything. A few times, I did get caught saying something out loud to her. I explained I was talking to my dog Bella because everyone talks to dogs. It was also easier than admitting I was talking to my bestie in heaven.

So, if I am reticent the next few days or don’t seem present, you’ll know why. I’m Ok. I’ll just be looking for my scissors while talking to Tori with a shot of tequila in my hand.

Fifty Years of Gratitude

Today I am grateful. I’m grateful every day, really, but today I am especially thankful. The people responsible for my gratitude should be acknowledged and adequately thanked, so I dedicate this blog to all of them.

The Early Years

I am grateful for my parents and that romantic night they had (I’m taking some creative liberties here, but you get where I was going) that resulted in me.

I was fortunate to have had a privileged childhood because my father worked his ass off, and my mom ran the house and raised my brother and me. We were monsters.

I am grateful to have had a close relationship with my mother’s parents growing up. I learned an innumerable cornucopia of life lessons that could have only come from them.

I’m grateful I was raised with all of the traditions of my Italian heritage of cooking, holidays, always using my hands when speaking, and swearing.

I’m fortunate to have an older brother. No, I am.
Even though he teased me relentlessly when we were growing up, we did have some fun times, and he’s there when it matters. He and my sister-in-law have given me two nephews I am super proud of.

Nephews – The Early Years

I’m grateful to my dad for bringing a puppy home to us kids knowing full well he was the one that was going to need a dog house. While my mom was none too happy for a long time, Pepper survived four homes, two states, and getting hit by a car. 13 long years in all.

I am grateful to all of the friends I had growing up. I couldn’t tell you where most of them are or what they’re doing, but each one played a part, even a small part in shaping who I am now. I also have some cool memories. I don’t know how I didn’t get arrested with some of them.

I’m grateful for having had piano lessons as a kid. On my ninth birthday, my folks bought me a piano. Remember, I said I had a privileged childhood? I took lessons on and off through high school. I can’t play much now. Sorry, mom & dad, that was an expensive piece of furniture to display framed photos.

I was fortunate to have been afforded the opportunity of a good education. My parents chose private schools for most of our education. They weren’t uppity boarding school private schools (no offense to boarding school alum). I’m talking about Catholic school. Yes, the rumors are true, BUT that doesn’t include me. I was a nerd.

I’m grateful for my parents teaching me that life isn’t a series of handouts. If you want something, you work for it. There were chores to do, then babysitting until I was old enough to get a” real” job. A MALL JOB. Every sixteen-year-olds dream job. Mine was to work at Baskin and Robin; sadly, I ended up at Macy’s.

I didn’t know it at the time, and I sure didn’t feel it; however, I am grateful now that my family and I moved across the country when I was 17. California to NY. It was devastating then, but it had a massive impact on pulling me out of my shell and shaping the course of my life.

 

Adulting

There are no words for the gratitude I have for whatever power or force is responsible for trusting me with the outspoken and stubborn child I have. I mean that in the most loving way, only a mother could. Raising a child on your own is challenging. When that child is (at times) smarter than you (and knows it), make sure you have wine available. The moment I knew I was doing a rockstar job as a mom was when my son shouted those three little words and went stomping into his room,” I hate you!” I Love you too, kiddo.

I am grateful for all of the amazingly fantastic teachers my son had throughout the years. Most memorable to me are Mrs. Moore in PreK, Sr Pat in 3rd Grade, and Mrs. Feller, who taught him four years of Latin. I know there are so many more. I don’t mean to leave anyone out. These three are the teachers I immediately recall; however, I do mean all of you. Except one. Who shall be known as Voldemort. Don’t ask, please. I’m serious.

I am so fortunate to know some outstanding individuals who I keep within my inner circle. I met Jennifer as a senior in my” new” high school in NY. She was spunky, sarcastic, witty, and smart AF. She still is, but imagine all of those qualities the way fine wine will age to perfection, and that’s Jennifer now. One little reason why I adore her so goes back to that August in 2013. The night before my first ever PET scan, I received a call that the machine was down. I had to be rescheduled; they don’t know when. Jennifer wasn’t having any of that. She pulled all the strings she had, made calls, and went straight to the top. The top of what, I have no idea, but it worked. I was the first person in that machine the next morning. I adore Jennifer.

Duran Duran Fans 4 Life

I’m grateful for my pup, Bella. She’s a source of comfort, she’s my snuggle buddy, my secret keeper, snack taster, walking partner, and little spoon to my big spoon every night.

 

I am grateful for my extended family, my in-laws. They are supportive. They call to check on us, are always available at the drop of a hat, and generous to a fault. My step-sons are a trip. They put on a tough exterior, so you don’t see how much they care. Most recently, the youngest wouldn’t book a trip he was looking forward to taking until my scan results came back. He would only go if the news were good. It was, and he went. I LOVE my sister-in-law. She’s my comic relief; every family function is even better.

BREAKING NEWS!!

I am grateful for my FUTURE DAUGHTER IN LAW! That’s right. My son asked, and she said yes!! I am so happy for both of them. She has a generous heart, and she’s hard-working. She loves Adam and makes him happy. I can’t ask for more than that. Bring on 2021!

 

The Hard Stuff

I am grateful beyond words for my Primary Care Physician. Without her keen attention to the results of my tests; the clues she found could have otherwise been overlooked, I certainly would be dead and wouldn’t be writing this blog. While this may seem contradictory considering my current diagnosis, Dr. P saved my life in 2013.

I am grateful to have access to excellent medical care, especially at Memorial Sloan Kettering Cancer Center in NYC. My oncologist there, Dr. Modi, is the best. She listens, she’s calming, she’s honest but not scary. I love seeing her. I shouldn’t because – cancer, but I do.

It’s not always roses and rainbows even in the best of marriages. Throw in a serious illness and you’ve just upped the stress factor by about 100 levels. Anyone who says otherwise is a damn liar. Most of our marriage has been in the shadow of cancer. It’s been trying at times but my hubs has always made sure even after that final diagnosis that the best medical care was available to me. He never complained, in fact, he insisted we travel to Manhatten so I could become a patient at Sloan Kettering. He still found time for us to get away when we could (still does) and he always tried to make me laugh even when I REALLY don’t want to. His sister asks me all the time how I ‘put up with him’ but really he puts up with me most of the time. I am grateful for him every day.

I am thankful for my friends that stayed. The friends that didn’t leave or ghost me after cancer became part of the dialogue. There’s a huge adjustment that happens when you are dealing with a serious illness. An even bigger one when that illness isn’t ever going to go away. No one realizes that until it happens to them or it’s happening around you. Just like marriage or babies- there aren’t “how-to” step by step manuals. “What to Expect When You’re Expecting” does NOT count. That’s crap too. It glosses. I digress. I’m trying to say that I wasn’t the easiest person to be around that first year. Thank you for sticking it out.

36 years of Friendship

I am grateful for the radiation oncologist that treated my bone metastasis. Instead of putting me through a month’s worth of treatments, the plan was five days for each spot after careful mapping and tattoo placement.

I am tremendously grateful to the first oncologist I had locally (I’m on my third one, not by choice) that not only listened to me but also HEARD me when I kept pushing for breast surgery to remove the tumor that was still present. I was not a candidate because I’m Stage 4. Ultimately I met with an angel of a surgeon who understood my logic and worked out a compromise. I had the surgery and am very thankful to Dr. O.

I’m thankful for my Gastroenterologist. Even though every single test came back negative and had no explanation for why I felt so shitty or why I kept losing weight, he referred me to a surgeon who removed my gallbladder. While it appeared normal on all the tests, it was acutely inflamed. That was the problem all along.

I am so grateful to have met and gotten to know so many extraordinary and remarkable people from all over the country and the world. Please understand, I am not now nor will ever be thankful for cancer. I’d give that shit back in a hot minute. I consider the men and women I have met along the way being gifts for the shit hand life forced onto me. They have all changed my life for the better. Far too many to mention by name.

All of the advocacy opportunities have been unlike anything else. It makes me feel like I am doing something to make all of this not so shitty for the next person. Going to conferences, taking part in protests, lobbying, and even organizing a social media blitz – it all makes me feel productive. I am so grateful for that.

 

This is the longest blog ever. Hopefully, you’ve made it this far and not fallen asleep. I’m just about done.

I am the most grateful and overwhelmed that I am celebrating my 50th birthday tomorrow, even though it’s during this pandemic and most things are still closed. My birthday falls on a Thursday this year. I bring up the day of the week because I was born on a Thursday, and I think that my 50th falling on the same day of the week as I was born is pretty neat. I used to have a mug that had the “Mondays Child” Nursery Rhyme on it. I loved that mug. It was then I learned that I was a Thursday’s child, and I had far to go. It’s not so corny anymore.

It’s a little bit poetic when you think about it; I should be dead. I should have died in 2016 according to the statistics. That’s IF you believe statistics. I’m not special. I’m not doing anything different than anyone else has done. It’s 75% luck. The other 25% is because of the treatment plan I’m on that has been working for the last 5 yrs. I wouldn’t be taking these medications if it hadn’t been for the researchers working to find the CDK/4 Inhibitor who then ran the clinical trials that resulted in Ibrance. That 25% is saving my life right now. It shouldn’t be. It should have stopped working, but it’s still saving my life.

Remember gratitude; always be grateful.

I’m leaving this song from Sia “Saved My Life” that inspired this blog below. Sia is and always will be my music God.

 

January 2020

This is where I am supposed to say I am #sorrynotsorry to see 2019 come to an end. Don’t get me wrong, I am. Quite a few shitty things happened that impacted many people. Notwithstanding some of the fun stuff. Traveling to Cancun in January with my ride or die Tori by invitation of Michelle and Robert. Epic trip! (Thank you both again so much for inviting us!) Followed by a pit stop in Orlando to attend the Metavivor Metsquerade in February.

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That’s where my 2019 peaked. It all went to shit after that. Don’t worry, I’m not going to rehash all the negativity and make this a pity party. No one wants to read that, and quite frankly, I don’t feel like writing about it. That’s what therapy is for. (Thank you, very much Whitney)

I have to say, though, I am not super impressed with 2020 so far. I am hopeful though, after all, it’s still January. Barely. That said, I am going to try something a bit unusual for me and see where it takes me. It’s been said that what you put out into the universe, you will get back from the universe. I know it sounds hokey. I almost feel foolish writing it as it sounds like those platitudes I cannot stand. Please don’t ask me who said it, I have no idea. But I know I heard it or read it somewhere, so I’m putting it to the test.

 

Here we go, my hopes for 2020 are as follows:

 

     1. Everyone has stable scans (yes, everyone)

 

      2. My friends who are struggling catch a big break

 

      3. I get back to writing regularly

 

     4. Spring arrives soon & Summer sticks around

 

     5. NYS passes the Medical Aid in Dying Act

 

     6. I actually get to see the big 5-0 without any crazy medical issues

 

     7. I give myself more self-care and grace

 

     8. More options & better treatments become available to extend our lives

 

     9. There will be more good news than bad

 

     10. The country gets its shit together

 

Ok. #1 and #10 are BIG asks, but it can’t hurt. Fingers crossed! That’s my list.

 

Now it’s your turn. What are your hopes for 2020?

 

 

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.

Writers Block is Real

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

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

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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Let’s Talk About Bucket Lists

Bucket lists.

They’ve always made me itch. From time to time I’ll hear friends talk about making their list or they will post pictures with a lead in of “Well, I checked this (whatever ‘this’ is) off my bucket list.” I immediately think about what happens when they finish the list or worse; they don’t get to finish because their health suddenly takes “that turn” no one wants to happen. Because of that, I’ve associated bucket lists with bad karma and never really put one together. I’m already living on borrowed time, why would I wag my finger in the face of fate just begging to get a clap back?? Ask anyone, I can be a pain in the ass with the whole – “no one’s going to tell me what to do, if I want to do it, it’s happening” but this is a whole other animal and I don’t think I’m ready to poke that chupacabra. Know what I mean?

All that being said. I still don’t have a formal list. Not even a Post-It note. However….

There has always been one thing, just one, that I’ve wanted to do. Even before cancer became my dark passenger. I had even kind of resigned myself to the fact that it wasn’t going to happen.

Then . (holy shit) . It . Happened.

What I consider a once in a lifetime opportunity landed in my lap to go home. Well, not where I grew up, but close enough. San Francisco, California. This was huge. I haven’t been home in 25 yrs. I truly believed I was going to die from this hideous disease without ever going back. The ironic thing is the way it worked out, I missed my 30th High School class reunion by four days but that was OK. Totally, absolutely, 100% fine.

This past Wednesday, two days ago Wednesday, I got on a plane and flew west. It was surreal. It really didn’t hit me until the plane touched down. As the plane taxied in and as I looked out the window, the familiar mountains in the horizon was like a hug to my senses. I cried. I cried the same way I am now typing this on the plane back (looking absolutely ridiculous to anyone that may catch a glimpse of me. I need a damn Xanax)

Oh those mountains

San Francisco Neighborhoods are Awesome

I only told one person I was coming home. There was only one person that was important enough to occupy the precious time I had. I only wish it could have been two. Both classmates. One from elementary/junior high and the other from high school. Unfortunately, Laurie, my dear friend from elementary school tragically died in 2011. That will always be my biggest regret, not coming back in time to see her.

I was able to give the biggest hug to Melanie. She’s no slouch giving hugs back! We had the best time catching up and hanging out. It was like I’d never left. Kind of. We ended up at at a casual neighborhood pub that made the evening even more memorable. We had no idea we walked in on trivia night. We opted out which lent to even better comedy. (We were compared to the old men on the muppet show but in a good way – I swear).

Our “30th Reunion”

It was the most amazing trip. I cannot emphasize this enough. This was everything.

I still don’t have a bucket list. After this week, I honestly don’t need one because I completed it without ever needing to make one.

To those that made this all possible (the whole thing), I could spend the rest of my days thanking you and it truly wouldn’t be enough.

Seriously, Thank you.