Life – During and After Cancer

A Personal Testimony by Jake Schaefer L.M.H.C., N.C.C. of Inspire Hope Consulting

Diagnosed with Leukemia at the age of 5 (now 35 years old), I was very fortunate with the treatments available. I went into an early remission and medically never looked back. However, mentally cancer is something that remains with me in a variety of ways.

People often ask me if I remember anything about my cancer treatments. I used to respond, “How could I not”. This was until I realized that it is impossible for someone without cancer to realize how intrusive cancer is.

So for those of you who thankfully have never experienced cancer this is what I remember . . . The feelings of isolation in the hospital, or if I was stuck inside to avoid infection – seeing the rest of the world go by without me – the huge pill regiment every day – walking into kindergarten bald – feeling like an idiot in math because of chemo brain – the piercing needles going through my bones during bone marrow aspirations – the thousands of sticks I had from blood draws, chemo treatments, and various other procedures – the anxiety I had driving to Iowa City knowing the next day I would have needles shoved in me – feeling jealous that no one else around me had to deal with this – feeling lonely that although death haunted me I had no one to talk to about it – the pain of hearing I may not be able to have children – the guilt when I lost my friends to cancer – the isolation I feel when I’m around people that can’t understand – finally, everyday I remember the anxiety about it coming back.

These are small accounts of my cancer experience. They have stayed with me for a very long time.

For a while I avoided being a cancer survivor. I tried to live my life like everyone else. However, cancer never left me. It hung around no matter how hard I tried to ignore it. I tried to push cancer out of my life. I stopped going to events. I stopped talking to people about cancer. I stopped telling people I had cancer. The problem was I still had all of the feelings, worries, fears, etc., but now I had buried them and cut myself off from my support system.

I needed to learn to take charge of my survivorship and stop letting cancer dictate the rest of my life. The first big step I took towards improving my life as a survivor was going to counseling to move past my post-traumatic stress symptoms. I was having difficulty with depression and anxiety. I was highly embarrassed about this and was to the point I could not handle things on my own.

Through the process I learned how reactions I had were associated with the intensity of what I went through. The simple act of talking about my experiences with someone who would be there just to listen was wonderful. It took this huge weight off of my shoulders. I slowly began to learn how to manage my problems, and it helped me put things in context. I have worked to get connected with other survivors through different causes and organizations. In my late 20's, I received a gift to attend a young adult survivors camp in Montana. It was like coming home.

I was in a group of complete strangers, but we all had one thing in common – cancer. It was an instant bond. I didn’t have to hide or censor myself. I didn’t have to worry about people not understanding. It also helped me take my survivorship more seriously. It was great being around other cancer survivors because simply put we were “family”.

The Livestrong Summit taught me to take charge of my survivorship and medical care. I got over being embarrassed being followed up in pediatrics. I went and had cognitive testing done to understand the effects chemo and radiation had on my brain. I began working on living a healthy lifestyle. I stayed involved in the cancer community to honor those who went before me.

Finally, I have learned how to keep the anxiety of possible second cancers at bay. I’m lucky enough to have a great life. I found a terrific woman who worked to understand what cancer is like for me. I’m blessed to have an 8-month-old son. I’m an independent consultant with Inspire Hope Consulting. I’m also a licensed mental health professional with Cedar Falls Counseling Associates. 


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