Photo Story: Previvor, Trust Without Borders Pt. 2
"There are moments which mark your life; when you realize nothing will ever be the same and time is divided into two parts: before and after this. "
If you didn’t read the first installment to this series, you can here. But to quickly catch you up, Kaysie’s son has had multiple medical issues in his short two years on this earth. In an investigative effort, Lincoln’s doctors suggested genetic testing of both Lincoln and his parents. This is when Kaysie discovered she tested positive for BRCA2. This is a genetic mutation that predisposes people to breast cancer and ovarian cancer with a percentage 85% chance! After making the hard call to Seattle Cancer Care Alliance, getting screened, and finding out there were already cancerous cells forming in her milk ducts, Kaysie decided to have a bilateral prophylactic double mastectomy. This lowers her risk of getting breast cancer from 85% to a 1-5% and completely removes the cancerous cells that were formed already. You can read more about these genetic tests and Kaysie’s process on her blog. She underlined that she would not have known about this genetic mutation had it not been for her son, and aptly titled it Saved By Lincoln.
The first time we met about doing this photo story following her diagnosis was like old friends reuniting over our shared love for white peony tea. We laughed and when the topic at hand came up, although we both understood the seriousness, there was a lightness. Since we are both photographers I think there was a mutual understanding of the importance of documenting this pivotal turn in her & her family’s story. Kaysie and I had spent little time together beyond this meeting. We met briefly at a mutual friend’s fourth of July BBQ where she practically hired me on the spot for a family session. I met her and her beautiful family on the shores of Semiamhoo bay for a short mini session and then the phone call about her results. What I have learned from this friendship so far is that she’s stronger than her 5”4 petite frame would have you believe. The internal strength within is something that can’t be mustered up or created from nothing. This woman has weathered some storms and come out the other side somehow softer instead of hard, thankful for life instead of bitter, open to love instead of recoiling from heartbreak.
Kaysie’s surgery is next week and we both thought it important to do a boudoir session of sorts as a reminder to herself of her pre-double mastectomy & reconstruction body. The same body that birthed life three times and the breasts that nourished that life. Strong and courageous seem to pale in their definition of this woman.
I am fairly young to be having a double Mastectomy so one of my hopes in sharing this journey is for another to find it and not feel so alone.
What caused you to want to share this journey? I am open about Lincoln’s journey. [Who has been diagnosed with Ichthyosis, Hydrocephalus & Ehlers Danlos Syndrome.] At first his blog felt too personal to share, especially the pictures of his skin condition when he was first born. [But] for me to have his journey to look back on has showed me the ups and downs, how we have always gotten through it. If I had never shared his journey I don’t know that I would have the strength to share mine. I’ve read women’s stories, finding out about the BRCA gene because of a strong family history but haven’t read anything about finding out via their children’s genetic testing. Lincoln saved my life. And just like Lincoln’s blog, someday I will read back and see the pain, celebrations, photos, the hurt and the courage.
I am fairly young to be having a double Mastectomy so one of my hopes in sharing this journey is for another to find it and not feel so alone. That it encourages women and men to get tested for BRCA. I also want Ruthie, my 5 year old girl, to have my story to hold onto. Especially if she tests positive for the mutated BRCA gene. My saying “I went through this Ruthie, you’re going to be okay” holds more weight if she has this raw documented story to look back on, to see how I was feeling, to see photos of my journey, she may feel that in fact our stories are more similar than “I had that gene too” can convey.
What has it been like for your partner in this journey? Adam- My rock. These days have been hard on him. Its not the fact that his wife will have different looking breasts. The pain, the pain of recovery from yet another surgery, he loves me fiercely. Its the lost, numb look he has. He doesn't know what to say because he's grieving too, but he doesn't want to make this any harder with his feelings of loss. I know he aches [because of] the memories of me walking down the aisle in my wedding gown, breasts that fill out the dress perfectly, in God's image. The nights we have held each other, feeling so natural and real. The decade of flirting and wearing his t-shirt bare without even a thought. This is his loss too, this is his pain, I imagine he is missing what used to be already. I see him silently crying. A husband would naturally feel sad, not because the loss of the body image his wife has had but because such surgery is so visible. So many memories, intimate moments, cherished physicality. Sometimes I think such raw grief hurts more because it often goes unspoken.
You identify as a "previvor". Could you unpack this? Being a previvor to me, is me having a choice. It's surviving something by way of being able to and choosing to be proactive.
Being a young mother of 3, given the choices presented, a double mastectomy was the choice I made. I wanted to be a previvor before I had to become a survivor.
I often think of analogies to go along with my story and being proactive about my genetics. Imagine having a small fishing boat and getting ready to go out in the ocean to catch some seafood. Your friend says, hey I notice something is wrong with your boat, if you don't fix it, you will have an 85% chance that it will sink, you will be left stranded and potentially die. Yes, the fix will take some time but with patience and hard work we can fix it and your risk of your boat sinking will be next to 1%.
The thought of this surgery was scary for sure but it was scarier to think I could leave Adam a widower and my children motherless. In a way it wasn't a choice at all.
You are just days away from your surgery, one that's been an abstract choice, a date set in the future. As you've moved closer and closer what are some thoughts that have come up? As I was organizing my house in preparation for the long recovery, I found an old night dress that I use to nurse all three of [my kids] in, it still smelt like milk. I was flooded with memories of nursing and closeness.
This is one of the things I am mourning, the loss of the natural snuggles and forever open arms policy. I know it will only be 6 weeks, but mommy-snuggles will never feel the same. I'm fearful of what im going to feel when I wake up from surgery. when I look down at a flat chest and begin the process of healing. And I keep thinking of this quote: "There are moments which mark your life; when you realize nothing will ever be the same and time is divided into two parts: before and after this." -John Hobbes
Please be sending prayers & thoughts to Kaysie and her family this week and the recovery journey. If you'd also like to practically give, a family member has set up a gofundme here: Kaysie's Double Mastectomy at 27