For a year and a half I fought the battle of my life. So why, when it was all over, did I end up in the ER wanting to end the life I just fought so hard to save?
After my diagnosis, it was Game On, there is NO way cancer would beat me. I endured a double mastectomy. I went through double breast reconstruction, a medieval like process that I suffered horrific pain from, several times passing out because of it. The experience still haunts me today. Next I chose to put poison in my body for four months. The pain and battle continued as I lost my hair, felt my energy leached from my body daily, suffered from “chemo brain” and was prematurely thrown into the teeth of menopause. Yet here I was, five months out of chemo, my main surgeries were complete and all I could think about was going to sleep and never waking up. On that horrible night I pulled my car over and forced myself to call a friend. She patiently talked to me. She told me what to do and called our pastor. These women, along with my husband, made sure I made it to the ER. It saved my life, again. Nobody knew how low I really was. How ironic that never once during my cancer battle did I ever consider giving up. I was laser focused on doing whatever was needed to beat this monster. I did not ask, “Why me?” Instead I thought, “Why not me?”
Receiving this diagnosis felt like being stabbed in the chest. I had two choices. Lie there and wait for someone to take the sword out and save me? Or pull the sword out myself, stand up and fight like hell? I chose the latter. So why now was I in this dark place ready to end it all.
I was 42 years old, newly married to a man who lost his wife to this disease. I had five thriving children and a loving husband. My family, friends and community embraced not only me, but also my family. I had financial resources at my disposal. I was considered one of the lucky ones. My hard work paid off. My prognosis was good. Yet I felt like the life preserver I had been using for the past year and a half had been taken away. I was told to swim to shore, yet I had no arms. I should be able to do this, yet I was drowning. I received amazing medical treatment throughout my battle. My surgical team and oncologist are some of the best doctors in our area. Yet, here I was, so completely ill-prepared for the next part of my journey/battle…Recovery. Life after treatment ends.
It was scary being done with treatment because I still felt so sick. I felt my worst at the end. My level of function both mentally and physically was so decreased that I did everything I could to try and create some normalcy. This only made me feel more inadequate, which sank me deeper into depression. It was like getting finished with all the training to be a paratrooper, then getting shoved out of the plane with no parachute! The idea of routine follow up care made me think that this feeling was routine and everyone is left to figure it out. What was wrong with me? Why couldn’t I pull it together?
Why is this not discussed in the cancer community? Why is there so little focus on, or resources for, the recovery phase of cancer patients? Where was the rehabilitation? My body had been traumatized on multiple levels. I needed to rebuild it, yet I was left on my own to figure out not only that this was a critical part of my recovery, but even how to do get it done! During the diagnosis and treatment part of cancer you meet face to face with many nurses, specialists and doctors. You have all the treatment information at your disposal. I received countless spiral notebooks from all my doctors explaining in detail my surgeries, the drugs they were putting into my body, hospital layout, etc. Where was the notebook that talks about recovery, rehabilitation?
I do not blame my doctors. They are my heroes, my friends. They did their jobs and I’m the victor because of it! However, I believe there is an important piece missing from the medical community when it comes to cancer treatment. Routine follow-up care once treatment ends should not consist of simply blood work and scans alone. We have fought a war and we need to recover. As I’ve spoken with more and more cancer patients, I’ve realized that I am far from alone. It is both ironic and maddening that we spend so much time fighting for our lives, doing what our doctors tell us and then cut loose, no chute. For all that I had been through and done it seemed unfair to end up here.
I did pull myself out with a lot of courage, tenacity and help. I put together my own fancy spiral notebook. I found a counselor that deals specifically with cancer patients. I worked with a Naturopath to help me with the nasty side effects from chemically induced menopause. I worked with a Psychiatrist. I reached out to my church. I involved some dear friends. I started feeling less ashamed. There were many pieces to the help I received. But I wish I had asked my doctors about a post-treatment plan. Actually, what I truly wish is that my doctor would have already been ready to educate me on what the next phase of my battle would involve. Just give me the parachute! I think I was so grateful they saved my life, not to mention the fact that I felt relieved to simply be alive! Shouldn’t that be good enough? I am here to say, “ABSOLUTELY NOT!” I fought too hard to accept this lower quality of life. I deserve better.
I wish somebody would have warned me so I could have been more prepared. Maybe then I would not have ended up in the ER with absolutely no hope. More and more people are surviving cancer. It is time to shine the light on this very real problem. This gap in treatment is unacceptable.
The other day my daughter who is 8 was studying her spelling words and one of the words was despair. She asked me what it meant. I told her it meant to give up, to lose hope. She walked over to me and gave me a big hug. She told me she was glad that never happened to me. Some day I will tell her. But in the meantime, my goal, my passion is to bring awareness to this issue. To hopefully help at least one person not end up where I did. Because I can’t imagine in a million years not being here on this earth, with my children and husband.