How one cancer survivor attempts to cope with the reality of having chemo for the rest of her life.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
Step by step, I enter the hospital where the treatment center for my cancer is located. I left my car with the parking valet, and placed the token in my purse. I walk up a flight of stairs. Step by step, I walk down a long hallway. I pass a snack shop with delicious coffee and a beautiful gift shop.
I pass the elevators that take me up to the second floor, where I have my twice-yearly bone marrow biopsies. These are necessary to follow my progression with the cancer. The nurses there know me by name and are so kind to me. Nurses always are!
Step by step, I continue on and make a sharp turn. I could do this route in my sleep. Finally, I spot the huge sign that says “Cancer Center” and the desk where I sign in.
I have been making this journey for over seven years now. Initially, I was waiting for a diagnosis for the anemia. After the diagnosis of myelodysplastic syndrome, I went for monthly appointments to monitor the chemo and see my oncologist. After the cancer worsened, I am forced to go five times a month from Monday through Friday. I receive two shots of chemo each day.
Sometimes while making this walk, I just try to stay numb. Other times, my emotions overwhelm me. I remember the naivety of thinking nothing was wrong at first. I recall the doctor soberly telling me the average time to live with this cancer was eight years. I am close to hitting that benchmark, and intend to keep going.
I think about all the changes the cancer has made in my life. I was forced to quit two part-time jobs that I loved. I reflect sadly on the worst side effect from the chemo. I lost even more of my hearing and went from being hard of hearing to profoundly deaf. I miss so many conversations and sounds people take for granted now. I think about the constant fatigue, the muscle aches, the blistering skin for days afterwards where I get the shots. I know I was fortunate to escape the hair loss and nausea so many people do.
My beautiful and loyal service dog has been faithfully by my side every single minute until now. The staff had treats for her and spoiled her during my treatments. She loved it and has made many a staff and patient smile. But now at age 13, she has hurt herself and is limping badly. I have made the difficult decision not to take her on that long walk. She has to stay home now. I will miss her desperately, and wonder if she will recognize the antiseptic smell of the hospital and chemo when I return to my apartment. She will be terribly missed by many, but I have to think of her.
I wish desperately that I had a type of cancer where the treatments would end, so I could quit this long journey every single month. I wish I had the kind where I could have the doctor tell me I only had to come back once a year – or never. While other patients have a goal and can mark off the number of treatments. But those of us with blood cancers know we will be on chemo until it no longer works. Even better, I wish I had no cancer at all.
People ask me how I do it. While I do get depressed sometimes, my answer is that I am still alive and enjoying life. My wonderful oncologist switched around my treatments so I was recently able to take a week-long cruise to Alaska. I am still savoring that trip and looking at my pictures.
I mentally “shake myself” as soon as I sign in. I have entered another world now. All the staff there knows me by name. As I have my blood work done, and chemo shots administered, I talk to the staff about their families. I chat happily with the people at the desk. I realize I have a whole new family that I love.
My oncologist always seems happy to see me and I am thrilled to see her. We chat about her daughter in college, my travels and my writing just like good friends do. I feel like she is a best friend who is keeping me alive!
Yes, this is my “new normal.” It is never a journey I would have chosen. But it chose me. And sad as I feel, and as difficult as that journey step by step is, I am at peace. I have made new friends, found a caring medical community and best of all, I am alive! That is how I do it!