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Rainbow Connection

By Rethink Contributor October 10 2019

Rethink is honoured to be the guest editor for Wildfire Magazine’s MBC: Young and Stage IV October issue, which is dedicated to highlighting the voices of those with Metastatic Breast Cancer. Here is Renee’s story.

 

The last words she messaged me were:

“Thanks Renee! Day by day as we well know. I can feel myself edging slowly towards a bit of improvement. Just gotta keep going!”

Three weeks later, she died.

Metastatic Breast Cancer killed her.

When I was initially diagnosed with early stage breast cancer at 33, I sought out a community. A community of others who were young just like me, and who had had their lives interrupted by a horrible stranger taking up residence in their bodies—cancer.

It wasn’t one community, either. I found numerous communities and connected with a variety of cancer patients and thrivers through Facebook groups, Instagram, Twitter and in person activities. Finding a community has always been important to me, wherever I go. As a social person, sharing experiences with others, getting advice, and being able to connect on a deeper level with others who just “get it” speaks to me.

With early stage breast cancer, those who I connected with during treatment got the “go ahead” from their oncologists to pick up the pieces of their lives post treatment and start to move on. And they did. I did, too. Our conversations that once focused on the crappy side effects of chemo, surgery and radiation now focused on figuring out who we are now as we slowly moved on from the wrath of being a cancer patient.

I was never comfortable with labelling myself in remission. I called myself a survivor as I survived six rounds of chemo, a bilateral mastectomy and 25 sessions of radiation. My plan was to be on Tamoxifen for 10 years.

Until it was again interrupted

I was diagnosed with Stage IV Metastatic Breast Cancer. Terminal, incurable breast cancer. It’s the only cancer that kills as there is no cure. Three out of every 10 patients with early stage breast cancer will progress and become stage 4 patients. There is no rhyme or reason. It just happens.

And it happened to me

I was told my prognosis. My oncologist even wrote it on a Post-It note when I asked him to fill out paper work. My life, my future and my everything was reduced to a few years.

I again sought out community. It was important for me to connect with fellow thrivers who like me have to stare death in the face daily while trying to balance living. Even though I craved these connections, I did so this time with trepidation. The community I’m now part of is marked by advocacy to be seen and acknowledged, riding the highs of stability, the lows of progression and ultimately death. It’s a very supportive community but in two years, I’ve noticed a pattern of sadness and devastating loss.

I’ve mainly connected with those who share my reality online and a few in person. They too look to connect with others just like me. We celebrate good scans. We question medical decisions but overall, we celebrate living! Then they share their progression. They might go quiet on social media for a while. In those times of silence, I often send a note letting them know I’m thinking of them. Sometimes I get a response. Sometimes not. Either are fine because when they become quiet, they are focusing their energy on themselves, their family and what they need to do to get through a day. Keeping everyone in the loop is often just too exhausting. I want to remind them that they are loved and thought about.

This year as the snow melted and the days became longer, what felt like a new, fresh start with spring around the corner, was marked by so much loss in my community. I never know when I’m going to login online and see the devastating news that another person in the Mets community has died from this horrible disease. My heart drops and I feel deep sadness. That another person in my community has been killed by this awful disease. Some days it’s too much. Some days it ignites a fire within me to advocate harder. And then the messages from the breast cancer community and their loved ones start rolling in. The impact that that one person had on others and how much they inspired those near and far is astounding.

But I know the reality is that one day, that will be me.

So, I remember those who have gone before me and think about those who live it daily. And I remember the words that my friend sent me before she passed away:

“I’m not giving up yet.”

-By Renee Kaiman


Click here to read more stories from Wildfire Magazine’s MBC: Young and Stage IV issue.