Returning to Port
My life has changed forever because of cancer. I have lost my leg. My uterus. My ovaries. My appendix. Part of my colon. My mother and father. At times, my hope and joy. I have lost so much. I have even lost my way. You would think someone who travels as frequently as I do would have this navigation thing down – but I have come to realize just how lost I was while on a month long sojourn to Washington D.C., Florida, and Virginia.
My trip began with a visit to the National Cancer Institute for my quarterly scans. I thought I was headed in for a routine visit and was focused on the next “leg” (haha) of my journey – Florida, where I would be having a new leg made due to the rapidly changing morphology of my stump.
So you can imagine my surprise, after three years of shrinking and stability, to see the long faces of the physicians in their white lab coats enter the room after my scans. We were all surprised and disappointed to discover that my hip and pelvis tumor had grown slightly, along with its little friend, the smaller tumor in the distal end of my stump. This was utter DEVASTATION. Not only was this not the news we were expecting, I was ALONE.
More than three years into the clinical trial and countless visits to the National Cancer Institute, where we had always received great news, we fell complacent. I had encouraged my husband to stay at home; I could manage this part on my own and would much rather spend the money for his travel on something exciting we could do together. Except, you have to be alive to go on the vacation, and I have forgotten all about my role in surviving.
Over the past several months, you have seen me write about how difficult my journey has become. I have wrestled with sadness, depression, and loss of hope. I have wondered, “Am I on the right path? What is happening? Why is my mobility decreasing over time as the size of my stump continues to shrink?” It’s as if I’m losing my panache to use my prosthetic leg. My brain and my body won’t connect. And the harder I try, the more difficult the effort becomes and the more fruitless the outcome.
So when I heard that the tumors had grown, I figured I had my answer. The slow, but steady decline to the end had initiated and I was witnessing the death of my vessel. I knew this day would come, but I just wasn’t ready for it. I don’t think you can mentally prepare yourself for the moment you know the end has begun.
But had it?
The same struggle of disconnect between my body ensued – except this time in reverse. My body was telling me it was over, but my mind could not reconcile with this reality. It was like a foreign language I could not understand, and I was unwilling to find the translation to make it my reality. Being the Never Give Up girl, I just felt lost. I didn’t really have time to process the news, as Winter Storm Stella was knocking on the door of the D.C. area and if I wanted to make it to Florida, I had to leave immediately and not the day after as I had planned. So I raced to the airport, boarded my plane, and showed up at my prosthetic clinic the next day with my news.
When I shared the new growth dilemma, my certainty that this was the reason behind our struggles, and admitted surrender to the inevitable decline, my team would hear none of it. Dan, my prosthetist, coach and mentor simply said, “No problem. We will work around it. YOU WILL WALK.”
And so we embarked upon our three week, intensive leg-making project. We ended up making three legs, and I’m currently wearing the third one. It’s the smallest leg I’ve ever had – and regardless of the new tumor growth, my team and Dan assured me I was on the right track. My gait has improved, my stump is the most muscular it’s ever been, and there is nothing holding me back from my marathon.
Our bodies are the vessels that sail the sea of life. We visit many ports, endure countless storms, and bask in many glorious days. As time progresses, our vessels begin to show their wear – perhaps there are chips in the exterior, a few dings and dents, or even missing parts. But we sail on. And as we transition from the swift, new hull to one that is more worn with character, it’s imperative that we seek a port in the time of storms. But for some reason, I seem to have lost that innate call back to port, and have tried for years to weather the storm at sea.
But while being cast about out there in the tumultuous seas, a miracle happened. A life raft appeared on the horizon. At first it was so distant I could not see it. Then, this past weekend, it arrived. It had a whole crew on board – full of my desmoid sisters. They encouraged me NOT to abandon ship – your vessel if fine. It is still seaworthy and capable of many more journeys. It is simply time to come back to port to rest. Recuperate. Rebuild. And so they gently guided me back to port – at the Healing U. Women’s Wellness Retreat in Virginia.
Honestly, I had no idea what to expect – I had never attended a retreat before. I organize events like this for teachers and students to discover the wonders of science and nature. So attending one that was all about OUR cancer, with only WOMEN sounded a little, well, foreign to me. But I could see the life raft way out on the horizon and something just kept me hanging on until it arrived. As we neared the shore, the beacon of the Lighthouse illuminated the path home.
I have spent the past four days immersed in learning, love, light, and hope. We gathered daily in our healing circle, in a building called the Lighthouse, literally. I honestly had no idea how lost I was until I was found. I am still processing all that has happened, but I can tell you for sure – I HAVE HOPE! I have so much hope I cannot wait to share it with the world. The kinship and sisterhood that was just formed is honestly not possible to put into human words.
There truly is nothing like being with fellow sisters who share your disease, walk the same road, weather the same storms and suffer the same reality. We lifted each other up – beyond a level any of us ever knew was possible. We learned about nutrition, essential oils, yoga, meditation, self care, self love, and – perhaps the most important part for me – how to SURRENDER. Ironically, it’s my inability to surrender to the process of rest and recuperation that has crippled me both mentally and physically. I have been so consumed with my fear of dying, that I have forgotten to live. I was terrified that if I stopped moving, this would then allow the cancer to take over and I would have to give up. I felt like if I stopped, I was GIVING UP.
My sisters showed me this weekend that even the finest, most seaworthy vessels must return to port occasionally. I have been out at sea, getting battered and bruised and not allowing anyone else to take over the helm so I can simply rest. Well, my crew has arrived and I trust them with my life, so I have returned to port and will allow them to guide me through these next few months of rest and recuperation.
Ultimately, it is not their responsibility, though – only I can choose to Surrender. Fully Surrender. We did a lot of journaling during the retreat, and the moment I had this epiphany I immediately did a word association with letters that spell Surrender. I could not believe what poured from my mind:
And that is EXACTLY what I am doing. Thank you sweet sisters for Beckoning the Lovelies.