Cancer Survivorship and the Mysterious 'New Normal'

Most people have heard the term "new normal" for individuals living, surviving and struggling with cancer. What actually does that mean? I can only share from personal experience what the mystery of the "new normal" means.

Most individuals know when they wake up each day they will have a day filled with work, fun and a day without pain. I wake up each day and wonder what my day will look and feel like. I look normal, so what is the problem? Will I have bone pain, dizziness, nausea, muscle pain, bruising, headaches, excessive fatigue or a "normal" day? Many people who know that I have cancer expect that I will carry on like nothing is wrong. The dreaded cancer is a frightening diagnosis, and even the word “cancer” is scary itself. Please allow me to share some of my experiences, and you be the judge of what my "new normal" is like.

Although I am retired, I volunteer at Jewish Family Services and the Leukemia Society of Columbus, Ohio, fly back and forth to Seattle, Washington to assist my brother who is seriously ill and travel frequently to L.A. to see my daughter's family, which includes my adorable grandchildren whom I play with non-stop. Yes, I have chronic lymphocytic leukemia, and yes, I lead a "new normal" life.

One person wrote of me in my LinkedIn, "Energy not known to man." Due to my cancer, I wish I had that energy now, but I have adjusted to living a "new normal" existence and allow myself to do what I can, when I can.

I take tramadol when my bone pain is extremely painful, and tramadol sometimes makes me dizzy. I told my husband one evening that I felt disoriented. The next thing I knew, I had fallen out of bed; fortunately, I was okay. I have also fainted three times. One of the times I fainted, my husband put me back in bed and for some unknown reason did not tell me—this was a big mistake. The next day I had my monthly infusion appointment (yes, monthly) and was in the ladies' restroom when the infusion team called my husband's name. My husband thought it was me calling and thought that that I needed help. He sought help to go in and see if I was okay as he stood on guard, ready to enter the ladies' restroom. Actually, they were simply calling the next patient who had the same name as my husband.

I have extremely painful fissures in my hands with broken and peeling nails. Sometimes I glue the fissures with Gorilla Glue! I have bone pain, which is excruciating, but if I take tramadol, my day is shot. So, I endure and pray that it will subside. I sometimes look like I have been through the war, with bruising over my arms, and I worry that I look like a battered wife, which is far from the truth.

Then there are the easier days when I wake up, feel great and want to go like the house is on fire.

These are only some of my experiences, and yes, this is my "new normal." Most individuals who have cancer live a "new normal" existence with little understanding from others of what that really means. Most do not ask, because the truth can be difficult to hear. Many try to be helpful but what can be helpful is the question. It is okay to ask, "How can I be helpful?" or, "Do you need anything?" One of my friends said, "I will be with you on your journey," and those words have stayed close to my heart. Help is not enabling the individual if you know what type of help is needed. Step out of your comfort zone and assist when needed and just be a friend who cares. I want and have a productive "new normal" existence and that makes life good.

One has to define their own "new normal" that works for them! I have written this piece to help others understand that those of us with a chronic illness such as cancer do have a new normal existence. We may look "normal," but our pace or actions may vary, and they vary with each person. I have had others say that I should be doing this and that. Sometimes I wish I could — the body just doesn't allow for me to do more than I am doing. I hope it may help patients with cancer understand: it is okay.