A Passion with a Purpose
First, a little update…
In March 2020, just before Team Ladybird was poised to run in the NYC Half Marathon, the world stopped spinning…or at least that’s what it felt like…and the run was canceled. This year, in March 2022, Team Ladybird finally ran for Fred’s Team in the NYC Half Marathon and they raised over $20,000! What an honor it was to be a part of their run…there are no words to express my gratitude to Nina and Sasha for their kindness and generosity. You guys are my ladybirds for life!
And now, to the present…
As I have written before breast cancer has changed my life in a lot of ways. There has been a lot of collateral damage from five years of diagnosis’, treatments and surgeries, but I like to think that it has also pushed me to grow as a person, to try to grab on to what matters the most and let go of the rest. As Breast Cancer Awareness Month winds down I wanted to share a little bit more about my journey. It has taken me a lot of time to be comfortable writing some of these words on paper…as open as I am about my life with cancer, I am equally uncomfortable with the fact that I am a cancer patient. Please bear with me if this is a rambling post!
When I was first diagnosed I would lay in bed at night thinking about my children and how I was passing this terrible cancer gene to them. It was all I could think about. I felt so guilty that my future generations will be at risk of breast cancer and will need screening their entire lives. I was expressing this depressing realization to my children’s pediatrician (a fellow breast cancer warrior) one day. She literally stopped me mid-sentence and said, “Kiley, you can’t fight the genetic cards you have been dealt and there is no sense in crying over what you can’t change. The good news is that we know they need screening, and the even better news is that new breakthroughs are being made everyday. Who knows what will even be possible by the time they are adults.”
She was right. Over the course of the past 5+ years I have been the recipient of some of these groundbreaking discoveries in the fight against cancer. I thank God every single day for the researchers, scientists, doctors and nurses who have dedicated their lives to saving lives. They are attacking cancer head on, chipping away at the power it once held. And thanks to these men and women, one day cancer will lose once and for all. New radiation techniques, scanning technologies, and tumor sequencing have all found their place in my treatment plan along with immunotherapy and enzyme inhibitors…I could go on and on. The amazing thing? Most of these new treatments and tools have been approved for use since my original diagnosis in 2017.
A bit about my diagnosis…
I was originally diagnosed with breast cancer when I was 36 years old. Our son was five and our new daughter was three months old. It was a trying time to say the least but I had no idea what was ahead for me. Before I had even finished treatment for my original breast cancer diagnosis we discovered a walnut sized tumor in my brain that required immediate surgery. A few smaller tumors would later be discovered…fortunately they did not require surgery but each one would require a very precise radiation technique that is known as Stereotactic Radiosurgery.
A year later it felt like life was finally normalizing a little bit. I had gone almost a year without another brain tumor and I was able to take a short break in treatment so that my husband and I could take a little vacation. It really seemed like we were in the clear, but after the trip I was not feeling well. This time we discovered that the cancer had returned and it had chosen my cerebral spinal fluid as its new home. I was diagnosed with a very rare metastatic disease called Leptomeningeal Disease (LMD). There was nothing we could do. We were going to try to slow the spread but there is no treatment. LMD is terminal and the prognosis is usually just months. I had a two year old and a seven year old. I was 38 years old and chances were I wasn’t going to see 39. After crying until I literally ran out of tears I picked myself up, and with the help of my incredibly supportive family and friends decided to fight this thing head on. In October 2019 my husband and I met with various doctors and researchers all over the country, searching for anything that might change my very poor prognosis. We finally settled on a treatment plan that wasn’t guaranteed by any stretch of the imagination but my entire medical team agreed that it had a shot. Three months later I celebrated my 39th birthday and shortly after that we received the miraculous news that the LMD was not visible in my latest MRIs.
For anyone who is sick or consumed with worry or struggling in any way whatsoever, hear me when I say this: Miracles can and do happen! And they can happen to you!
Three years later we have still managed to keep the LMD at bay. It has not been perfect…I had another cancer removed in 2021 from my left side and after five years of surgeries, procedures and treatments I have been on the receiving end of quite a number of side effects, each one requiring its own treatment. I remain on chemotherapy to this day and will be on one therapy or another indefinitely.
It’s definitely not perfect…there is no pretty ribbon to tie up the ends of this story. I’m fighting every day with all of my heart and plenty of my days are not easy. But I do find it perfectly wonderful to be surviving, and I thank God everyday for the gift of this messy, complicated, unpredictable life I am still living!
As I wrote earlier I have used my cancer journey to realign and focus my energy on the things that matter most to me. One of those things is cancer research and care for everyone. I have been so blessed to have the most incredible care team and access to all types of treatment, maintenance therapy and screening. I am here because of it all, and I knew that at some point I wanted to find a way to honor not just my breast cancer journey but the journey of millions of other breast cancer patients, past, present and future.
I decided at the beginning of 2022 to give the proceeds from all of my creative and artistic endeavors to breast cancer research and outreach charities. Not just in October but all year long. My passion for art and design has kept me going during my battle with breast cancer. It has been a bright spot in an otherwise difficult time in my life, and I truly believe my passion has finally found its purpose.
Our pediatrician was right…it’s not the cards we’re dealt but how we choose to play them, and this is one of the ways that I’m playing my hand. It is a small thing that I can do to pay forward the amazing care that I have received over the past several years and hopefully help others receive the care they need. Maybe one day in the future cancer will finally lose the war and our future generations won’t even know the battle.
But until then Game On cancer!
xo…
ki
If you are interested in learning more, here are a few of my favorite resources for breast cancer research, care and education:
