Cancer High-Jacked My Identity-How I Found A New Perspective

A serious diagnosis is life-altering in a way no one can adequately put into words. First, there is the shock that overcomes you entirely. When that wears off, attack mode kicks in. Sometime after that short-lived euphoric-esque feeling, the feeling of helplessness arrives as the treatment plan begins. It’s the helplessness that pushed me into wanting to do something – anything – to mask that feeling.

I turned to advocacy even though I didn’t realize it at the time.

If I Don’t Think About It, Is It Really Happening?

I lent my voice to a chorus of others who understood this cluster of feelings. Having the same diagnosis, there is a kinship with folks in a similar situation who have the same outrage. It felt good to belong to something after having my career and life as I knew it ripped away. I attended conferences to gain as much knowledge as I could and jumped into any opportunity that filled that gaping hole in my life.

Immersing myself in advocacy made living with MBC more palatable (if that’s possible). I was doing something that had to do with cancer almost every day but wasn’t focused on ME and cancer. There was always something else to concentrate on for or with other people.

I was traveling more than I ever had before – for an event or a conference. or a campaign. I still had medical appointments, scans, and tests, but I ate, breathed, and slept advocacy. It became who I was, not what I did.

Who Am I and Where Did I Go?

About four or five years after diving into the advocacy ocean, some people recognized me as my blog name or as the co-founder of The Underbelly. I wasn’t Susan anymore. I’m pretty sure I even called myself ‘Stickit2Stage4’ a few times when I introduced myself to others. Before I knew it, I was almost nine years into advocacy and all things MBC.

The 2020 lockdown was a major turning point. All in-person events stopped.

I began to realize that I had lost sight of who I was at my core. The lines between what I was doing and who I was were extremely blurred. I had allowed cancer and MBC to take over who I was – it became my identity and a crutch. If I wasn’t doing something having to do with advocacy, I didn’t know what to do with myself.

Getting To Know Me Again

But that’s not who I REALLY am. I am a Mom, a Wife, a Daughter, a Sister, an Aunt, and a Grandmother. I love to bake, watch movies, and binge-watch my favorite shows. Now, I am doing those things again and even discovered digital arts, teaching myself how to use different apps. Digital arts and creating is my new favorite alone-time activity.

The traveling I do now is for pleasure. Visiting family and friends. Even going on a day trip because there is nothing going on on a random Tuesday. Spending time with my granddaughter is a joy I never knew existed.

Some of the experiences that had been afforded to me were quite memorable. Others I could have done without; regardless, I’m very grateful for meeting countless people who befriended, accepted, taught, and even argued with me over the years. I am a better person for all of it.

Advocacy will always have a place in my life, however, now I know there needs to be a healthy balance.

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.

Pumpkin Spice & Everything Else

All things Pumpkin spice is a popular flavor in our household so I felt compelled to make pumpkin cookies. But is it just me or do Pumpkin Spice Lattes make their appearance earlier each year? I’ve even seen Halloween candy on store shelves last month. August. WOAH! SLOW DOWN!

My Beauty

The most amazing happened this past Tuesday. I was to watch my beautiful granddaughter for an hour or two. Right before my daughter-in-law left, while My Beauty was in my arms, she said Da-Da! Her first word! I thought my heart would burst. It was even captured on video by my daughter-in-law. I will have it anytime I want to see it. I wanted to cry, but I didn’t want to scare My Beauty.

When my son said his first word, I missed it. I was at work and he was with my mom. I will never forget the disappointment I felt because I wasn’t there. There are so many firsts and as parents we want to be there for all of them. Being with My Beauty when she said her first word more than made up for the disappointment I felt all those years ago. It’s cliche to say, but I truly feel blessed for having this moment. Never in my wildest dreams did I imagine I would be here to hear it.

Scan Day

Friday, I’m having a PET/CT. The scans I had in June were questionable so now three months later this scan should give a clear picture of what, if anything, is going on inside my body. I’m just a little nervous this time around because there are a lot of questions that will be answered. I’m not sure I’m ready for some of them.

In preparation, I have created a new playlist to listen to while I sit and wait for the radioactive tracer to make it’s way through my body. When I figure out a way to share it here, I will. Tomorrow, (24 hrs before my scan) I have to eliminate any and all carbs. I cannot chew gum, have candy, drink soda or (worst of all) caffeine. I also am restricted from any kind of exercise, heavy lifting or other strenuous activities. That means I cannot leave my apartment. We have been taking the stairs due to an issue with the elevator. Six flights up and down. Since last January. Unfortunately for me, it’s done nothing for me weight loss wise. Figures.

One thing I haven’t mentioned is that a slow-growing new primary cancer was discovered last November. Renal Cell Carcinoma is the medical term. Broken down, I have a tumor in my kidney. It was small then and because of the location, a biopsy was not possible. It may never interfere with the treatment for MBC. As long as it stays small (less than a centimeter) it won’t be a concern. Truth be told, that little bugger is the least of my concerns.

Also, I’ve updated my website again. If there are any glitches encountered, (and I think there are) shoot me an email or comment on this post to let me know.

Does music help you find your zen the way it does for me? Let me know what some of your favorites are. Until next time……

Let’s Talk About Labels

It seems as though we are obsessed with slapping a label on things associated with illnesses. These labels, regardless of stage, can be isolating to some extent, even off-putting. Other people closely identify with them.

I will be the first person to tell you that cancer is difficult. One size does not fit all, and living through it can fundamentally change a person. While it makes perfect sense to want to celebrate being done with it all and putting it in the review mirror, is it essential to identify with a specific label that constantly reminds you of that experience? And what happens if cancer returns? Does “survivor” still resonate?

So, when did this start, and why has it changed over the years to incorporate a whole month and a specific day dedicated to survivors & survivorship?

To Be Or Not To Be

The term “cancer survivor” was introduced by a US physician Fitzhugh Mullan which appeared in New England Journal of Medicine in 1985. He suggested that survivors included people from diagnosis to the end of life. Distinguishing them from others with a worse prognosis.

Margaret I Fitch, RN, Ph.D, Editor in Chief, Canadian Oncology Nursing Journal wrote an article entitled “Take Care When you use the word survivor in 2019. Fitch acknowledges that there are several ways in which to define the word survivor and that none are universally accepted.

“The word itself likely grew out of the declaration of ‘the war on cancer’, and is connected with a notion of ‘winning a battle’

Margaret Fitch, RN, PhD

Additionally, a small study was conducted in the UK focused on 20 young women (between 18 & 44 yrs of age) that were 1 – 10 yrs post diagnosis. The study acknowledges 23 previous studies that explored how individuals who have had cancer view the word survivor.

The conclusion of this particular study was not unlike the others in that 

“…not all individuals living beyond cancer identify as survivors and that this language may indeed be alienating and harmful for the well‐being of many”

Let’s Try Something New

It’s clear the term survivor does not resonate with everyone who has had a lived experience with cancer. Even those who are no evidence of disease years after completing successful treatment. So, why is it still used? Why can’t we adopt something new that doesn’t alienate anyone while being truthful to everyone’s experiences?

I challenge everyone to stop using survivor and instead say: “lived with” or “living with” cancer. Cancer isn’t who we were or what we are. It’s something that, for whatever reason, happened. W are all doing the best we can to live through or with it.

How do you feel about the term survivor? Let me know in the comments.