Today Is The Day I Never Dreamed I Would See – Now What?

I was wondering how today would hit me. Although I forced myself not to think about it. It’s just another Friday. How is anyone supposed to feel on the anniversary they had their world blow up in their face? It’s a slope I can never seem to navigate comfortably. 

I Don’t Know What To Call Today – Does It Need A Name?


Ten years is a long time to survive in the world of metastatic cancer. This particular year is such a mixed bag of emotions. So many friends are gone, a few are really struggling, and another I’ve known almost as long as I’ve been in these circles and have the utmost respect for will be entering hospice. While I know this is how it all goes, I have conflicting feelings about celebrating my longevity. 
I can count on one hand the people I know who are living double-digit years with MBC. A few, like me, have reached the elusive 10 yr mark. Are there more? No doubt, but I can only go by who I know. Am I grateful? Absolutely, yes. However, I didn’t do anything unique or different than anyone else has or will. 


I wrote about this in an article featured on Health Union’s AdvancedBreastCancer’s website earlier this year. Now that this day is here, I relive that particular day as I do each year. Groundhog day, if you will.


Hour by hour. 


Minute by minute. 


Each action, conversation, and phone call that happened that day is engraved in my memories and replays like a D-list horror movie, whether I want it to or not.

What I Wish I Knew Then And Burden Of Loss


I wish I could go back and tell that frightened and angry younger me that while the doctors meant well, they would be wrong about my prognosis. I would tell her this ride won’t be all pink glitter and sunshine but that she would meet people and have experiences that would fundamentally change her. I would say to her it’s OK to feel all the feelings, that a perpetual smile won’t help or cure her no matter how many insist that positivity is the key. 


Since Tori died, things don’t seem to hit the same way for me. Her humor, her wisdom, and her understanding of all of this was such a comfort. It hasn’t gotten easier. It never will. I have to learn to live without her. I hold on to our conversations, shenanigans, and the other close friends she introduced me to. I know she would be so that we talk regularly and have helped each other.

The Bright Sunshine Burning Away The Gloom


The day is half over, but not the worst part. That comes at 5:30 p.m. That’s when I received THE call. That’s when I finally understood the gravity of those words. When my brain began to swim, I felt like I was drowning. The oxygen left my lungs as I thought of how I had to tell my loved ones and my then 14-year-old son what I knew.


As the clock ticks down to that hour, I will focus on my beautiful granddaughter, Piper, and my second granddaughter, arriving in October. Piper has been the gift I never dared imagine I would know. Her sister, Sophie, will be another blessing in my life. It’s those girls that I will be focusing on.


I don’t know what the scans in November will show, and right now, I choose not to think about that. I know that whatever the results are, I will continue to live a life my granddaughters can be proud of.

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.

This slideshow requires JavaScript.

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?