This story is brought to us by Heather, a young adult cancer survivor of mesothelioma.
February 2, 2017, will mark 11 years since I had my life-saving surgery to remove the cancerous tumor on my left lung. They not only took the tumor, but to ensure that the cancer didn’t return, they took the entire lung, the diaphragm, the lining of my heart, and a rib for good measure. This procedure not only saved my life, but also has enabled me to live much beyond my initial 15-month prognosis.
Yes, I am an eleven-year cancer survivor! That in of itself is something to celebrate, but the road here has not been an easy one. I was originally diagnosed with malignant pleural mesothelioma on November 21st, 2005, just 3½ months after the birth of my first and only baby. From the outset, I knew I had to survive. I had this precious baby girl who needed her mommy. I had a husband who didn’t want to have to raise Lily on his own. Fighting to survive was my only option.
I was referred to a specialist 1,400 miles away from my home who held the best hope that I could live 5 – maybe even 10! – years. It was this doctor, Dr. David Sugarbaker, who performed the mesothelioma surgery and set me up for successful treatment. Following my surgery, and subsequent recovery, I went through 4 sessions of chemotherapy and 30 grueling sessions of IMRT radiation. I had never been as sick as I was in those months, but I had to keep the end result in mind. To be a survivor and raise my daughter, this was the carrot that I kept my eye on as I sat in the chair watching the drug drip into the IV line in my arm, and as I laid on the table while my body was silently bombarded by toxic radiation. These are the lengths we as cancer patients will go through to be able to claim the mantle of survivor.
I finished my last radiation treatment on a Friday, in mid-November, almost a year to the date after my diagnosis. When I walked out of the room, the nurses were there with a little “Certificate of Completion.” I thanked them, said I hoped to never see them again. It was a lame attempt at a joke, but I meant it in all honesty. I never wanted to have to go through that again.
I sat in my car and stared at this silly certificate. Yay for me! I finished all my treatment!! I was officially a survivor. Why did I feel so lost and empty? This is the part of being a survivor that no one tells you about. Sure you hear the advice of “Live every day to the fullest” and “You can really appreciate all you have.” All great things yes, but they gloss over what is really felt.
As I sat in my car in the parking lot of the cancer center I began to cry. I cried out of relief, I cried out of frustration, but mostly I cried out of grief. Why grief? All I had known for the last year of my life was spending every waking moment aware of my body and the battle that was raging in my cells. I paid close attention every day to the changes in my body to make sure it was doing what it was supposed to and responding to treatment. For the last 30 days, I had spent 2 hours a day at this cancer center getting radiation. THIS was my life, fighting cancer, and now, I was done.
I didn’t know how to feel. The certificate seemed silly, almost like a participation medal for a year-long marathon. I had spent the last year of my life fighting like crazy, and this is all I have to show for it?
I drove home and didn’t really feel any different. Wasn’t there supposed to be this huge shift in my mind and body now that I was a “survivor”? I didn’t feel any different.
As the weeks went on, and my life got into a new routine, I kept wondering when things would get back to normal. That is when it hit me. There was no “back to normal.” My life had changed on a foundational level. Everything I knew or thought I knew went away the minute I heard the words, “You have cancer.” I had to quit my career that I had nurtured and grew the 10 years before I got sick, so I had no job to return to. I was now a stay at home mom, which I was loving, but not what I had planned on. I had missed almost the entire first year of my daughter’s life, so I jumped into being a mom with all the passion I had given to my career. I missed other adult interaction though. I missed going to work every day, and I missed my clients. I still had days where I was so fatigued that it was all I could do to get through until Lily’s nap time so I could lay down and rest.
No one told me that about being a survivor. No one told me I would still feel bad, and have good days and not so good days. No one told me that my body would take months, even years to recover from the onslaught of treatments. I wasn’t prepared mentally or physically for what survivorship really is. Everyone assumes once you are done with treatment that everything returns to normal. I felt like I let people down if I told them how I really felt. I also realized that once the crisis of the moment is over, people fade back into their lives. Of course, I didn’t expect people to be around all the time, but I will say it was weird that people stopped checking in on me. It was as if now that the cancer was gone, they were too.
No one tells you that when you are a survivor that the smell of a hospital or doctors office will transport you back to one of the scariest times in your life and send your heart into palpitations and make your breathing come in short gasps until you close your eyes and tell yourself over and over that that was then and this is now. No one tells you that the radiation you had will affect the nerves in your body for sometimes years to come. No one tells you that chemo brain is real, and that you will be forgetful and not be able to focus like you used to on thing. No one tells you that you get so frustrated by the limitations your body has that you cry hot tears of anger because running across the playground to keep up with your child isn’t possible anymore. All these things I learned in my years as a survivor.
The biggest thing I learned? Don’t suffer on your own. Find help, find answers. I was not satisfied feeling the way I felt so I found myself a good counselor who specializes in post-cancer trauma. I learned what I was going through was not only expected but perfectly normal. I had felt like such an outcast for so long, but through my therapist’s help, she showed me how to take control of my life again.
I started reaching out and helping others, not only got me out of my head, but out of the focus on helping other people through a similar situation that I had been through. I was able to prepare people for what their body and mind were going through. It was just what I needed. It awoke in me the desire to give people hope when they had none. I made it my mission to make change happen. Something amazing happened. The world opened up. I met some of the most amazing people who helped clarify and assist in my mission, and I found that survivorship is a long road not a stop at the end. I have found a new me, and a new normal, a survivor not only in body, but in spirit, a survivor that doesn’t give up, even when grief and loss threatens to overwhelm me.
Surviving means more than surviving whatever it is that is thrown at you. It is doing something with what you have left over after losing almost everything. And the magic in doing that is: You have everything to gain.
Thank you for sharing your story with us today, Heather! Interested in sharing your voice with Lacuna Loft? Email info@lacunaloft.org! To learn more about Heather’s story, go here.
