Today marks the two year anniversary of the surgery that saved my life. Over the last few days my mind replays that whirlwind of a fearful time. I just can’t help it; I’m not sure September 18th will ever pass by without mental flashbacks. So, I write about it. It helps get it out of my head & work through the cacophony of emotions.
Sorry there’s not much about dogs or agility in this post. But I will say, my dogs were a crucial part of managing my disease and recovering from it.
I knew for many years that there was something wrong with me. Through hours and hours of researching my symptoms on google, I began to think I had Cushing’s disease. Cushing’s is a benign tumor (usually small) on either your pituitary gland (in your brain) or in rarer cases on your adrenal gland. Emphases on the benign part. The disease brought with it extreme levels of cortisol flowing through my body, so I had severe anxiety. (Which I desperately tried to hide from friends and family) The disease also brought with it high levels of androgens, pcos, elevated heart-rate, acne, made weight loss near impossible, cuts and bruises took much longer to heal than with a healthy person, high blood pressure, and much more. Today, when I look at the list of everything I went to my doctor with, I have no idea how I even functioned. The cortisol and androgens would get me blackout angry and made it impossible to calm down for hours.
I went to my doctor with what I thought was wrong with me; Cushing’s. She told me there was “no way” I had it because it is “too rare”; she’d only seen two cases in her entire career. She didn’t even want to test me for it, and I was going to take her at her word and not push it. It was David, my then fiance & now husband, that said no. We would have the tests and if she didn’t give them to us, then we’d find someone that would. I didn’t realize it at the time, but he just saved my life.
After months and months of tests, all pointing to Cushing’s, I was finally able to get in to see one of the world’s leading endocrinologist at Johns Hopkins Hospital. He got me into a CT scan the very day I met him. My scan lit up like a Christmas tree. The illuminated mass was huge; approximately the size of a softball. The radiologist contacted my doctor immediately, and let him know that cancer was the most likely scenario. Cancer was causing my Cushing’s symptoms, not a nice little benign tumor.
I was driving home from the hospital with my parents as my fiance followed in a different car. My doctor called and in a very detached, clinical way described the findings and expressed that he thinks I have adrenal cancer. I don’t know how I even finished the conversation with him. As I hung up the phone I lost all grip on reality; my world spun out of control. I was screaming like I’ve never screamed before. The type of scream that tears & rips at your throat. The type of scream that takes all your breath and energy with it. I vaguely remember my dad telling me to calm down. Calm down? Calm down?! No… there was no rational thinking, no calming down. Only an all consuming despair that was crushing my soul. I clutched at my mother, trying to ground myself. If there’s anyone in the world that is suppose to protect you from all the evils and horrible things in life, it’s your mom right? I can still see myself twisting in the front seat around to my mom and clinging to her arms and hands, screaming “Mommy, mommy, Oh God! Mommy!”. I guess in the face of death, my 25 year old self reverted back to a child. After the eternity of that drive home, I had to face David. I collapsed in his arms in the driveway of our home as I told him the news. He stoically comforted me and brought my mind back from the breaking point.
That night I thought of all the things in life I would never do. Adrenal cancer does not have a good outlook, especially with a tumor of my size. I would never marry the love of my life and experience life’s adventures with him. I’d never finish my fantasy novel. I’d never get to travel to Europe. I’d never get to fulfill my dream of competing in agility on the world stage. I’d never… I’d never… I’d never. There was such finality to it. Never. I felt as though I’d been given an expiration date. I raged at the unfairness of it all. To die at 25yrs old?! Me?! No, that’s not possible. It’s not something as a child you even consider as a possibility as you dream of the grand future that awaits you. To die at 25 felt so incomplete. So cheated. That entire night, I shook uncontrollably as though from a chill, but I wasn’t cold. I shook in fear. In anguish. In desolation. I felt as though death had laid his boney hand on my shoulder, and was just watching and waiting. It was a feeling I wouldn’t wish on my worst enemies.
The next day I met the most amazing doctor, Dr. Prescott, my surgeon. He was kind and compassionate human being that was able to answer our questions and ease our fears. He told us we can’t be sure of anything until he performs the surgery. Then, we could see what’s going on and get a pathology report. So we shouldn’t get ahead of ourselves.
I won’t trouble you with the gruesome details of the surgery and recovery. All I will say is that it was the most pain I have ever experienced in my life, and completely shifted my comprehension of what pain really is. At times I wished to die instead of being in that much pain.
The mental test was waiting for the pathology report. I was waiting on a life or death verdict. I had no control over the outcome. All I could do was wait. Lay in the hospital & eventually on my couch at home, unable to move or get up on my own, and wait… Wait… Wait… Wait…
A week and a half after my surgery I received the news… I AM CANCER FREE. It was the closest call I could’ve had. My tumor had many things that pointed the diagnosis towards malignancy, but lacked one thing that would’ve sent me down the dark path towards the worst prognosis. Any type of invasion or spreading. It was so close that they meticulously sampled many parts of the tumor to make sure it hadn’t spread. Despite the intense pain I still was in, I felt like dancing. Dance to the music of a second chance on life. This beautiful, messy, adventurous, breathtaking, extraordinary life. I cried lovely, wonderful tears of happiness and joy & felt Death’s grip release me.
So I live my life like never before. I own every second that this world can give. I married the love of my life.
I’ve been working like a fiend on my book & hope to get it published by next year (hope you’ll all read and enjoy it!). My husband and I plan to travel to Europe next year and have all sorts of amazing adventures. Bilbo and I pursue our international competition dream with all our heart and soul, and are trying out for the European Open, World Agility Open, and Agility World Championship teams in the next year.
I’ve traveled all over the country with my loves & tasted all that life has served me with joy and exuberance.
With every breath I take, I swear I live…