Dear Advocacy, It’s Not You; It’s Me

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

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

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

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

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

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

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

Miss Minnie in charge of the gender reveal!

The Quiet Time

Most mornings, I am the first one awake. I like that. I have a routine that I follow. I go into the kitchen, turn on the Keurig, put hazelnut creamer in my coffee mug, and while the coffee is brewing, I prepare Bella’s breakfast. The first of her several small meals throughout the day. I grab my coffee, my meds, an “after breakfast” cookie for Bella, and head for the couch. While I check my phone to see what I missed overnight, Bella & her full belly snuggles up next to me & falls asleep.

Morning puggle snuggles

This quiet time is my favorite time of the day. The only sounds that I hear are the clock’s ticking on the dining room wall, the soft whooshing of the traffic below us & Bella snoring. It’s peaceful & relaxing. My Twitter feed is full of tweets about what’s going on in the world & updates from friends sprinkled in between them.

It’s ironic how the brain triggers the memory of events that happened in the past. Songs, smells, places, reading a book, or specific dates. It happens even when we don’t mean to or even want to, depending on the memory it triggers. That happened to me this morning. Not just one memory, but two.

These memories are both exceptional, each in its own way. They are separated by fifteen years. I can recall every last detail of each memory. When I think of them, it’s as if I am back in that moment again. I hear the sounds, what was happening around me, and who was there with me. I even experience the feeling as if it’s happening for the first time. I don’t always remember them in the order in which they occurred. However, one always triggers the other. It’s like being in a time machine but without the “Back to the Future” Delorean. Does this happen to everyone?

This morning it happened backward. My memory placed me back in one of the many waiting rooms at Memorial Sloan Kettering in Manhattan. I was waiting for the nurse to call me for the first of four scans I was having. I was sitting in an armless chair; the bright sun came through the windows on my left. Above me, in the corner of the room, the TV was on. Good Morning America was on. A couple won a contest to be married, live on their show. The hook was that John Legend would also be there to serenade them with his wildly popular love song: “All of Me.” Later that afternoon, I would be in the exam room sitting next to my Oncologist and, on the other, my husband. She read the results of my PET scan. It was the first one I had after I started treatment and the first time I heard: No Evidence of Disease. I was confused. My doctor put her hand on mine, looked me dead in the eyes, and said, “The cancer is not detectable. The Aromatase Inhibitor is working. This is the best possible news.” It took a minute to sink in. I cried & laughed at the same time. That was seven years ago.

GMA 2014, Courtesy of ABC News

I will always be grateful for that memory. It’s probably the only positive, happy experience I’ve had living with cancer. I had hope again. Hope that cancer had taken from me. That feeling is what triggers my next significant memory. It was a snowy day in 1999. I had the ultrasound that every expectant parent looks forward to. I saw my son, for the first time, cramped in my belly. He looked so chill. The tech pointed out his tiny little finger buds, his spine, his legs. She was reassuring that all was well. Did I want her to tell me the sex? she asked me, YES, I wanted to know. She moved the wand back and forth over my stomach. “There it is,” she said. “You’re having a boy” The rest of the story can be read Here

As I sit here remembering these two events, I think about what’s to come this month. My son & future daughter-in-law are graduating from college. They will have commencement ceremonies this year. While the No Visitor policy is still in place, I’ll be watching the live feeds. The following week I will have fully realize a dream I never imagined I would have the honor to attend; my son’s wedding. I am so looking forward to watching his bride walk down the aisle to exchange their vows.

I adore these two

I’m still trying to wrap my brain around all of this. When did he grow up? Most parents who get to this point in their children’s lives want to turn back time to when their kids were little. I honestly don’t. I cherish this time right now as he builds his life with his soon-to-be wife. They both have accomplished a lot in the last four years. I couldn’t have imagined a better future for my little pup.

My lil pup

At the last minute, I chose to have my PET scan last Friday. I wasn’t going to do any significant medical stuff this month as I didn’t want anything to put a cloud over these monuments occasions, but in the end, I knowledge is power. I didn’t post anything about it or the “look at me; I’m having a scan” picture on social media. Many of my friends are dealing with their health that it just didn’t feel right. I realize it shouldn’t stop me from talking about what’s happening with my own health. It’s separate, but I guess I’m becoming more empathetic now that I’m in my 50’s. Is this what happened to the Grinch?

May 2021 will be the most fantastic month. I am going to take in every second & enjoy it to the fullest. I feel so, so fortunate, and I thank the universe for keeping me No Evidence of Disease for now.

We Are Literally Dying For A Cure

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.

pinkisnotacure2

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.

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.