There Is No Guidebook for Life With Cancer

This year will mark 10 years since my IDC (invasive ductal carcinoma), stage 1, triple-negative breast cancer diagnosis. I wish I had a slew of lessons to share although truthfully, it took me a very long time to understand, process, work through and appreciate it all — especially survivorship, which is something I am continuing to navigate.

Prior to my diagnosis, and at the behest of her former OB/GYN, my mom underwent genetic testing and ultimately tested positive for the BRCA1 genetic mutation. While breast and ovarian cancer had always been lingering somewhere in my mind given my substantial family history including my maternal grandmother and two aunts who all faced similar diagnoses and passed away in their early 40s, I was acutely and blissfully unaware how it would play out for me.

After testing positive for the BRCA1 mutation myself, my course of action at the time was surveillance until a routine MRI presented the image of a tumor, confirmed by a core biopsy taken shortly thereafter.

Without going into the detail of my treatment and surgeries, which involved a double mastectomy with DIEP flap reconstruction (which is threatening to be taken away as a reconstruction option), and chemotherapy, I have substantially struggled in the aftermath of it all. I took steps regarding family planning at the suggestion of my medical team and underwent fertility treatment and egg preservation prior to chemo. I later had a preventative salpingo-oopherectomy, a surgery where I had my ovaries and fallopian tubes removed considering the BRCA1 genetic mutation also effected ovarian cancer. I still didn’t have a handle on all of it, not mentally or emotionally anyway.

What I knew then and what I know now: You will find your people and you will find where you are meant to be and what you are meant to do — your purpose. I had my people (I’m grateful for them every single day) and found even more of my people who just got it without me having to say a word.

But boy, was I in the wrong place. I didn’t realize it until much later, although the professional environment I was in was fueling my anxiety and depression. Here, I had been through this massively personal, life-threatening, mind fu*k of an experience and then was expected to go back to “normal” or the way things were. What did that even mean?

While I was not able to fully understand or articulate the depth or meaning of this chasm at the time, I was drowning. I felt like I was watching someone else’s life and it was honestly sad. It took everything I had to get up, get out of bed and even show up for work, never mind complete each task with the utmost precision, fervor and passion.

No one really got it. No one really understood. Some were empathetic although also realized my dilemma — how much of this can I share? Was I willing to risk telling them how cancer and undergoing chemotherapy treatment had impacted some of my cognitive functions, that I am most likely in a deep depression, and it is taking every ounce of energy I have to be present?

As I did my best to make sense of what I was thinking and feeling and how it was changing everything I had known, I was hoping it would be received with support and accommodation. I was wrong. I am not sure the term “gaslighting” existed at the time, although that is what I ultimately endured. I wasn’t making excuses; I needed help finding a solution. I needed help, period. Given how mental health is currently a more commonplace and frequent topic of conversation, I am hopeful that if this happened today, it would be met with a much more sincere approach and understanding.

What I’ve learned:

• The rules are there are no rules. There are no guidebooks or manuals to tell you what to do and how to do it. There are support groups and communities, yes — and that is where you will get a tremendous sense of understanding, support, and hopefully, feel like you are not alone. While each person may have varying degrees of differences in their experience — from diagnoses, surgeries, and treatment plans, there is an unspoken connection and tangible feeling of being understood. Personally, this allowed me the ability to express how I was feeling and what I was thinking even if it made zero sense because I felt safe. This community is here for me to lean on – for guidance, support, encouragement, information, and so much more.
• Accept that not everyone will understand and appreciate what you’re going through, and that is OK. Not everyone needs to get it, as long as you acknowledge and attempt to work through it.
• Appreciate those who show up for you although respect that they may be emotionally and mentally spent too.
• Life looks at bit different than I thought it would although I am here. I am grateful. I am alive. And that is truly something.

This post was written and submitted by Carrie Kreiswirth. The article reflects the views of Carrie Kreiswirth and not of CURE®. This is also not supposed to be intended as medical advice.

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