Chordoma Foundation

Heather’s Uncommon Story: This challenge helped me become even more of who I could be

Heather uncommon chordoma story

My name is Heather and I am a Chordoma Survivor. Never did I think that, just over a year ago, I would be starting my cancer warrior journey. In October of 2012, I woke up with severe pain in my lower back and in my glutes. These episodes required painkillers to get through and usually a few days to recover. I finally went to see my doctor. He thought it might be piriformis pain and sent me to see an orthopedic surgeon. The orthopedic doctor too wondered if this was just muscle pain that I needed physical therapy for. The next step in my journey would be the turning point to discovering the cancer. An unrelated illness caused me to end up in the ER with a small intestinal blockage. The doctors did a CT scan on my abdomen and pelvis. The blockage cleared within 24 hours but shortly after my hospital stay, the doctor caring for me asked me to come into his office. He’d found something, they asked me to have an MRI. I was terrified but knew I had to find out what was going on. For me, faith was an integral part of staying calm as I did a lot, I mean a lot, of waiting.

I recall the surreal feeling of visiting my oncologist’s office the first time. Surrounded by the beauty of Seattle, this building was filled with people with in their own cancer story. I even recall the hospital band being placed on my arm. I felt marked, and it felt ominous. When we finally sat down with my oncologist, he said that the MRI results indicate a cancer called Chordoma. I had no idea what that really was. I had done some researched but had decided to take what I learned one step at a time. Next, I was sent for a biopsy in order to get a more definitive diagnosis. The week of waiting seemed like an eternity. I considered this journey and prayed a lot and talked a lot and tried to process the potential diagnosis that could change my world. What will I become after this? I even thought that I might be preparing to fight a battle that would also be my end in this world.

Heather Stackhouse

The day finally arrived and we waited, nervously, but with a strange peace, to hear what this THING that was growing in my body is. The answer came. “Heather, you have Chordoma.” I said very calmly, “Ok, what do we do?” My doctor informed me that I would need surgery to remove the part of my spine that had been invaded by this unwelcome visitor. “What does this mean, what is going to happen to my body, how will I be when it is done?” The questions swirled in my head and I spent a lot of time writing down my questions and asked them and noted the answers. I was determined to be as prepared as I could be. As I prepared for the surgery, I thought about who I wanted to be during this fight. I wanted me to shine through no matter what and remain true to myself and that faith and strength and courage would carry me!

One of the most heart-wrenching parts of this battle was sharing this diagnosis with my family and friends. This proved to be what would help me be brave. My husband and son were my primary support system here, and my daughter, who lives in another state, could not be here but sent love and support that I needed. My friends and family created a Facebook page for me where they would send messages of and love and support. The messages gave me courage and helped me remain me, not just a woman who has cancer. I didn’t want to be labeled or hold the cancer diagnosis too close. It would be something I would come through and not stay in.

Surgery day came and I felt more peace than ever and was ready to face this challenge. I was very blessed to have my husband stay by my side through it all. My brave teenage son held down the home front and cared for our dogs while I was in the hospital. My very best girlfriend came to stay with me in the hospital too and helped me keep my sense of humor as I learned what this surgery had done to my body. The doctors were confident that the surgery had accomplished what they had hoped – clean margins and no evidence of cancer! Part of my sacrum was gone- S3 down to my tailbone. I woke up from that surgery delighted that everything seemed to work and move well!

I discovered that I was able to keep laughing, keep believing that I could beat this cancer and come out a better more true self. It took a long 4 months for my surgery wound to heal, but all the while I knew that I could and would get through this.  Starting in late January, I began 32 treatments of IMRT radiation. I gained strength even just walking from my car to my appointment. I came to love my team who helped me through this part of my cancer experience. Laughter, smiles, and lots of gentleness kept me going. I found an invincible part of me could help me stay true to me and this challenge helped me become even more of who I could be. Ringing that bell at the end of radiation treatment seemed to release me back to life. I have grown stronger and more determined to take each day as it comes and beat this cancer. If I can do it, anyone who is visited by this cancer can do it!



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