Breast Cancer

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

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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.

Piper and Nanna Today
Piper and Nonna Today

Angry Lungs Make It Hard To Breathe

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In my last post, I mentioned my blood pressure was unusually high. Since that post, my breathing has become more labored, and my fatigue has been off the charts. My chest was also beginning to hurt. It’s like a cramping feeling with pressure. My heart was OK. Was something wrong with my lungs?

At my Pulmonary appointment, the NP suggested we walk around the office while she monitored my blood oxygen levels. On starting our second lap, the pain in my chest began to feel worse, and I had a hard time catching my breath. My oxygen level plummeted to 89%. I was on the cusp of reaching the point where they would suggest oxygen.

Instead, I was scheduled to have a CT Angio. I was not in any way anxious about this scan. There’s no way I had a blood clot in my lungs. As I left the radiology office, I half expected to see a notification that test results were ready to view – meaning nothing was wrong.

Lungs, Why Are You Betraying Me?

It wasn’t long after I got home that my phone rang. Still not concerned. It was my Pulmonologist. She called to tell me I had several small blood clots in the left lingular subsegmental pulmonary arteries. I had to start a blood thinner immediately.

Lung
Anatomy of Lungs

I was floored. This was not how I expected the day to go. Definitely not that call or those results. BUT – at least there was an actual reason for why I had all these symptoms.

Answers Lead To More Questions

Now all I can think about is, why? What caused this? Both of the medications I take for the cancer have a possible side effect of pleural effusions. Is it a fair assumption that this would happen after seven years on the same meds?

Could the cancer have woken up and become active again? OR is it as simple as I previously had a DVT when I was first diagnosed, and I’m at a higher risk? Regardless, I would like to know why or what caused this, but I may never know.

As for now, scans will be in March. Hoping to have a very UNeventful February.

Oxygen is going UP!

Vaccines, Shots and Scan Results

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When I scheduled my COVID booster, I didn’t look at the calendar. I always check my calendar—this time, I did not. I checked with my oncologist to see if I could get the vaccine before a PET/CT. You can’t, by the way. So when I scheduled my COVID booster, I didn’t know it was the day before my Faslodex shots. I will never make that mistake again. I historically have a complete immune response that includes high fever, muscle pain, bone pain, chills, and headaches. To add insult to injury, I also had them give me the flu vaccine because why not feel the absolute worst I can possibly feel at one time.

I did try to change my vaccine appointment, but it would have pushed it out to the middle of October. I wasn’t comfortable with that. Onward. As expected, I had all the side effects. I also didn’t sleep because of them. I shivered and sweated while watching my new favorite show: Bones. How did I miss it when it was on? My fever reached 102.5, and I contemplated canceling my Faslodex appointment more than once. Hourly, in fact.
When Tuesday morning arrived, I choked down some Tylenol with some very strong coffee and slowly got ready for my appointment.

An Unexpected Surprise

It turns out this wasn’t going to be a normal Faslodex appointment. It was also time to get my Xgeva shot. Xgeva helps keep my bones strong-ish. It’s a small subcutaneous injection but really packs a punch. I get it every three months. Let’s not forget the port draw I wasn’t expecting. Honestly, that is typically the least painful even without numbing cream. We did the Faslodex first. The alcohol they swab your behind with didn’t dry completely. I knew this as soon as they jabbed the needles into me because it burned something awful. The sensation went all the way down my legs. That always makes it feel like the shots last FOR-EVER.

My angry port.

The port draw was next. The nurse jammed the large thumbtack-like needle into my port. She fidgeted with it and told me to turn my head to the left (my port is on the right). She wasn’t getting a blood return. The nurse raised the foot on the reclining chair I was in and released the back, so I was lying down in this chair. Still no blood. The nurse explained she needed to use a medication called Alteplase which would break up the small clot preventing the blood from coming thru my port. I had to sit while the Alteplase did its thing. Thirty minutes later, the nurse could get blood return and draw my labs. Finally, she administered the Xgeva, and I was free to go.

Scan Results

Good news. There were no new metastasis seen and my new friend in my kidney is still too small to be seen. I’m thankful my oncologist agreed to the PET after my previous scans. It makes me nervous to think if she had gone with the June scans, and the inconsistencies, and decided to change my treatment how that would have gone. We agreed to scan again in March.

Dear Cancer, Kiss This!

Let’s Talk About Labels

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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.