There is no guide to living with cancer

This year will mark 10 years since my IDC (invasive ductal carcinoma), stage 1, diagnosis of triple negative breast cancer. I wish I had a whole host of lessons to share, although truth be told it took me a long time to understand, process, work through and enjoy all of this – especially survival, which is something I continue to navigate.

Prior to my diagnosis, and at the request of her former OB/GYN, my mother underwent genetic testing and ultimately tested positive for the BRC1 genetic mutation. Although breast and ovarian cancer have always lingered somewhere in my mind given my extensive family history including my maternal grandmother and two aunts who all faced similar diagnoses and died early 40s, I was blissfully unaware of how it would turn out for me.

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

Without going into detail about my treatment and surgeries, which involved a double mastectomy with DIEP flap reconstruction (which is threatening to be removed as a reconstruction option) and chemotherapy, I’ve struggled a lot following everything that. I took steps regarding family planning at the suggestion of my medical team and underwent fertility and egg conservation treatment prior to chemo. Later, I underwent preventive salpingo-oophorectomy, a surgery in which my ovaries and fallopian tubes were removed since the BRCA1 genetic mutation also affected ovarian cancer. I still didn’t have it all under control, not mentally or emotionally anyway.

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

But boy, was I in the wrong place. I didn’t realize this until much later, even though the work environment I was in fueled my anxiety and depression. Here, I had had this massively personal, life-threatening mental experience, and was expected to go back to “normal” or the way things were. What did that mean?

While I was unable to fully comprehend or articulate the depth or significance of this sinkhole at the time, I was drowning. I felt like I was watching someone else’s life and it was really sad. It took everything I had to get up, out of bed, and even show up for work, not to mention completing each task with the utmost precision, fervor, and passion.

Nobody really understood. Nobody really understood. Some were empathetic although they also realized my dilemma – how much of this can I share? Was I willing to take the risk of telling them how cancer and chemotherapy treatment had impacted some of my cognitive functions, that I’m most likely in deep depression and it’s taking every ounce of energy I have. have to be present?

As I tried my best to make sense of what I was thinking and feeling and how it changed everything I had experienced, I hoped it would be received with support and accommodation. I was wrong. I’m not sure the term “gaslighting” existed back then, although that’s what I eventually endured. I wasn’t making excuses; I need help finding a solution. I needed a period of help. Since mental health is now a more common and frequent topic of conversation, I hope that if it happened today, it would be much more sincerely approached and understood.

What I learned :

• The rules are that there are no rules. There are no guides or manuals to tell you what to do and how to do it. There are support groups and communities, yes – and that’s where you’ll get a tremendous sense of understanding, support, and hopefully that you’re not alone. Although each person may have varying degrees of difference in their experience – diagnoses, surgeries and treatment plans, there is an unspoken connection and a tangible sense of being understood. Personally, it allowed me to express what I felt and what I thought even if it didn’t make sense because I felt safe. This community is there for me to lean on – for advice, support, encouragement, information and so much more.
• Accept that not everyone understands and appreciates what you’re going through, and that’s okay. Not everyone needs to get it, as long as you recognize it and try to solve it.
• Appreciate those who show up for you, while respecting the fact that they may also be emotionally and mentally drained.
• Life is a little different from what I thought, even though I’m here. I am grateful. I am alive. And that’s really something.

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

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