What Survivorship Means To Me

While everyone is looking to "forget" or "cancel" 2020, I simply can't allow that to happen. Because 2020 is the year I thought I'd never see. It is, universe willing, the year I turn 50 (September 17th) and achieve five year remission (October) from stage IV colorectal cancer; two of the biggest milestones I could've ever hoped for. Today, on National Cancer Survivors Day in this momentous year, I want to reflect on just how much this really means to me.

From Day 1, I considered myself a survivor. I didn't give myself a choice otherwise. I tried not to think about the fact that cancer was in my body across 27 places in my rectum, liver, both lungs, and lymph nodes. I tried not to think about the doctor not answering me when I asked him what my chances were. I didn't look at the glaring "Stage IV" on my radiology reports or the statistics on the internet. I just kept telling my friends, as my knees buckled, "Someone has to be the 14%, right? Why can't it be me?"

Stage IV colon cancer has a relative 5-year survival rate of about 14%. This means that about 14% of people with stage IV colon cancer are likely to still be alive 5 years after they are diagnosed.

I absolutely had to find a way to beat cancer. Everyone has their reasons. One reason was wrapping me up "like a taco", he sweetly told me, in a blanket on the couch as I lay sick from chemo. The other one was being diapered, fed, lifted, medicated, and stabilized in the other room. They were my two sons - age 10 (Griffin) and 8 (Emmett) at the time. My younger son has multiple disabilities and special needs due to a chromosome abnormality that impair him to the level of a 6 month old infant - he cannot function for himself nor communicate in any way. He is dependent on my husband and me for his very existence. When Griffin looked at me through his tears and asked me, "Mom, are you going to die?", I hugged him and watched helplessly as my husband did everything that I was supposed to share in the overwhelming caregiving for Emmett. I solemnly declared, "There is NO WAY I'm going anywhere."

I was diagnosed in 2014, underwent 13 chemotherapies until my surgeries in April, 2015 (a second emergency surgery was required for a medical accident which caused internal bleeding and cardiac arrest), continued 42 more maintenance chemotherapies, had radiation on my lung in October, 2015, and have had clear scans ever since. I was very fortunate that I had an "unprecedented" response to treatment. People always ask me how I did it. I committed to a plant based diet, exercise, positivity, humor, and faith. I have an outstanding medical team - but even they will tell you that it was luck. I do think that my 100% Polish stubbornness and my competitive "refuse to lose" attitude for our special son's sake had a lot to do with it. I blocked out nausea, fatigue, and pain much of the time as I was consumed with his needs. As I look back, I have no idea how I managed all of Emmett's care AND beat stage IV cancer. Each task in itself is overwhemingly daunting; but I don't know where I found the strength to do both at the same time. It took an absolute village of support from people to whom I will be indefinitely indebted.

Survivor guilt is tough. As I began doing well, I emerged as a figure of hope and advocacy within the colorectal (and general) cancer world. I formed a treasured friendship with a patient who reached out to me for help, Jim Huber. Jim was diagnosed at Stage III and saw the same doctor I saw who wouldn't give me my odds to beat this. He told Jim he had an 70-80% chance of survival. Jim and I became so close that he lovingly referred to me as his "cancer wife." Unfortunately, Jim's battle went the other way and he passed away last July. I think about patients like Jim all the time. Why am I here but they are not? I don't know, but the least I can do to honor their memory is to use my survivorship for a purpose - to fight tirelessly for those affected by cancer; to get patients second opinions, to leverage technology for better care, to help them navigate the system, and to ultimately try to find a way for them to beat cancer like me. It won't bring Jim back. But I know he (and his family) are so proud of me every time I deliver a punch to cancer for someone.

It's not like you're "back to normal" after cancer, particularly stage IV cancer. It leaves behind a trail of destruction; mentally, emotionally, and physically. There are a lot of disabilities - many of which you can't see and that we survivors don't talk about. As a result of colorectal cancer, one of the conditions I suffer with is LARS (lower anterior resection syndrome) that affects how and when I have bowel movements due to my reconstructed rectum. I've had to leave important dinner events because of flares of my LARS. In layperson terms, I could poop my pants at any unpredictable moment. I know, sexy. I'm also very open about my struggles with PTSD and panic attacks due to flashbacks to my illness. I suffered a broken rib last November due to "radiation recall" on my lung. I had gum graft surgery due to recession from chemo. And surveillance scans are always stressful as I "wait for the other shoe to drop" and cancer rear its ugly head again. Once you are a stage IV cancer patient, you are a cancer patient for life, since stage IV likes to remind you once in a while how angry it is that you defied its odds...

Despite all of this, you try to find the normal. A normal family life. Normal friendships. Normal activities. A normal career. For me, the career part is still shaking out. Between my son's and my care, it's taken me this long to even entertain what that may look like. After my surgeries, I set two goals for myself. At three years survival, I wanted to design a website to give people hope by reading my story and for companies to find me for motivational speaking and consulting opportunities. I accomplished that. At five years, I wanted to start writing my memoir about these and a few other adversities I've faced, plus a few funny stories thrown in. My now 16 year old son urges me daily, "Mom, please write the book. No one will even believe what all you've been through."

So, survivorship for me is everything. It's my whole life I fight so hard for; for me, for my family, for those who love me, and for other patients who depend on me. This new buzz term "patient experience" should not be taken lightly. I AM the patient experience. I've been been poked, prodded, probed, and pricked more times than I can count and can tell you what the patient experience should feel like. Respectfully, any examination of a patient experience without a patient's input lacks the necessary empathy and perspective to qualify as authentic. Today, I embrace Cancer Survivors Day with all of my fellow survivors, both in and out of treatment. I appreciate every single person who has made my survivorship possible. And how will I celebrate? Here at home with my awesome husband and precious sons. But the sky will be a little bluer, the sun a little brighter, and my smile a little wider (if that's possible). Because being a survivor is simply the pure joy and gratitude of waking up today and every day after a cancer diagnosis.

Stacy Hurt, M.H.A., M.B.A. is an award-winning 20+ year healthcare executive, special needs mom, and stage IV cancer survivor. She has voluntarily served as a patient advocate for thousands around the world.  Stacy was selected as one of ten #HIMSS20 "Digital Influencers" and is a member of the 2020 National Cancer Survivors Day Speakers Bureau. Connect with Stacy on Instagram Facebook Twitter or Her Website. She resides in Pittsburgh, PA.