Five Years Cancer Free
Five Years in Remission and I Can Finally Breathe - 3.12.23
Normally when March hits, I hit an emotional wall. I burn out easily. I know the month is coming. I feel reclusive and sad. I think about 2018 and how I lost my leg to cancer and how my whole world changed. I think about the depression, despair and how trapped I felt in my own body. I think about how I had hit the ultimate rock bottom emotionally. Looking back, I don’t know how my friends and family handled me because I was in such a dark place. I was not even the same person. I remember being afraid I was going to die. I remember wondering if I would walk again, let alone run.
I had NO IDEA what my life would look like as an amputee. I did not know if my cancer would return. The hope was that it wouldn’t by taking extreme measures to eliminate the source, however, as I have learned over the years from meeting other sarcoma survivors, amputation does not guarantee a cancer-free outcome. Sometimes amputation is a way to buy time. In 2018, I did not know if I was buying time or saving my life.
When I was originally diagnosed in 2014, I had a one-year-old daughter and an eight-week-old son. I only made it three years before my cancer came back.
During my original surgery, we did not know we were doing a “cancer surgery” because my biopsies came back benign. Clearly, we did not get all the microscopic cells and I remember when it came back on year three, I was so blind-sided because it came back so differently. I will never forget the horror and heaviness of that appointment. I felt like I couldn’t breathe. I felt like my lungs were trapped. My whole body was hot. I remember not being able to get my words out. I remember wanting to RUN out of that appointment because I felt like I was going to suffocate if I sat another moment in that office.
I remember getting to my car and hyperventilating. I went to my scan alone because I felt confident that I was in the clear. However, I wasn't in the clear. I was on my way to losing a limb to save my life and I could not process that this was happening to me. I cried and cried and cried. I was on the highest dose of antianxiety and antidepressant medications that my doctors would prescribe just to be able to function. Just to be able to get out of bed and face my kids. It was the most horrendous feeling I have ever felt.
The worst part? I kept thinking I was on borrowed time and wondering when I was going to die. It was awful. I remember constantly asking my mom and husband to take pictures of me with our kids because I was terrified they were only going to have pictures of me left. I completely lost myself.
Fast forward to my amputation surgery and the world heard my request to “Move Because You Can” and hundreds of people from all over the world -all ages, races, genders - got out and MOVED on my behalf. I remember waking up from from surgery and the flood of support from people who knew me and didn’t came pouring in. It was the most unreal, humbling experience. It also helped pull me out of the horrific headspace I was in. Your messages and support literally saved me. I never knew that many people could care. It was the most beautiful showing of humanity that I have ever experienced.
Each year when March would come, I would feel a glimpse of that negative headspace. It took me a little time and self-work to realize that I experience medical PTSD a few times a year. I remember in 2021 when year three hit the second-round post amputation and I was holding my breath for good results. I was so scared because I did not make it through three years the first time without a recurrence. Thankfully, I did.
This year marks FIVE YEARS NED (no evidence of disease) and it feels different for the first time.
Part of me has a sense of survivor’s guilt. I think a lot of it has to do with the work I do through MFJ. I mentor so many people with sarcoma. Some go through amputation, others do not. I wonder sometimes how I got lucky that I still get to be here, but others along the way that I have met do not.
The other side of me feels like I can FINALLY breathe.
Five years NED is a big deal in the cancer world. It means statistically, my survival rate drastically increases, and my recurrence rate drastically drops. I have waited to be five years CANCER FREE for eight and a half years and this is the FIRST March I have experienced since my kids were born and my initial diagnosis where the month of March did not make me feel sad.
March 1 hit this year and I smiled and exhaled the breath I have held for eight and a half years.
Going forward, my next scans will be at seven years and a final scan at 10 years. I will still visit with my favorite doctor (my oncologist) annually. I know I will still experience medical PTSD from time to time and when these final two scans roll around. Those feelings are valid and I know that. But for now, I am celebrating that I survived and that I am still here. I am celebrating that I am doing everything I said I was going to do when I did not know what life would look like.
I am LIVING, loving, MOVING and still to this day, trying my best to use my story to help others. The Move For Jenn Foundation has raised almost $1 MILLION DOLLARS since the inception and I could not be prouder of the grassroots foundation we have created.
The way our community has supported me and our nonprofit, I will never be able to accurately show the amount of gratitude I have. Thank you for supporting me through the hardest times of my life and thank you for helping support my mission to pay that support forward to others who need us.
In honor of five years cancer free and doing what we do best, we have a CALL TO ACTION that we need your help with!
We are setting a goal to raise $10,000 to help a 15-year-old girl named Annabel Remmer. With these funds, we will be purchasing a specialized socket, sports knee, liners, and a running blade to help her get back to the sports she loves most - soccer and running! Whether you donate $5, $50 or $500, every dollar counts to make a difference. Help us change this young girl’s life!
Learn more about Annabel below by reading the grant request her mom submitted:
Hello to all the team at Move For Jenn
This was the original video I sent Jenn back in May when our worlds were so dark and despairing.
Jenn’s support, your website and reading the grant recipient stories, really brought some hope back into our lives.
As you can see from the video, my daughter Annabel was an active 13-year-old. She played soccer for Burntwood Phoenix – 5 times county cup champions and was a member of all her school’s sports teams.
In Feb last year a horror so unimaginable hit our family and we’ve been trying to survive – quite literally for Annabel – ever since.
Her treatment is now thankfully over, and she is learning to walk on her new prosthesis, but her real dream is to run again, to feel the wind in her hair and the sun on her face as she tries to salvage what’s left of her childhood.
The world of prosthetics is completely foreign to me but her team at Dorset Orthopedic have put together a letter and quote for the sports leg they think will give Annabel her life back. (Please see attached letter and quotes.)
Annabel, this week, launched her new website. She wants to show people that there’s nothing to gain from letting your heart shatter. She wants to inspire others to get back up when life knocks you down.
I know that Annabel could be such a wonderful ambassador for Move For Jenn and would do everything she could to raise awareness for your foundation.
I am 100% sure that Annabel will become a hugely successful amputee athlete, but the first step is accessing a sports leg and aside from Move For Jenn I have no clue where to turn.
I understand if there are many more deserving recipients, I am just so thankful for the support I have already received from Jenn.
Sally Remmer – Annabel’s mum
Help us give Annabel the gift of movement and make your donation here!
--I recognize that not everyone reading this blog is at the same milestone marker as myself. If that is you, I want to leave you with some encouraging words. Someone I was mentoring recently asked me when they get to call themselves a survivor. Regardless if you hit five years NED (no evidence of disease), you are fighting to be here. That makes you a survivor. If you choose life, you are a survivor. If you are LIVING despite your diagnosis, you are a survivor. If you are in the thick of it, you are a survivor. If your mental health is taking a toll, you are a survivor. If you are thriving now, you are a survivor. If you only have the capacity for the basic day to day, you are a survivor. You and your life are worth fighting for and you can do hard things. YOU are a SURVIVOR. Don’t give up.