The complex conflict between hating your chemo with the side effects and knowing it is keeping you alive is difficult for patients to grasp.
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.
I compare my love/hate relationship with chemo to how I felt when I got my first hearing aid at age 6. I had to wear this ugly, awkward, square box on my chest with a cord going into my ear. My mother made a little cloth cushion and the aid was attached to my underwear or my bra every minute I was at school. The hearing aid caused me embarrassment, ridicule and to be bullied all through school.
But I also loved this boxy little device. I could actually hear words and distinguish sounds when I put it on. It allowed me to be more “normal.”
I feel the exact same way about my chemo. I hate the week every month I have it. For five days in a row, I roll out of bed and drive to the other side of the county to the hospital where the cancer center is. For five days, I sit in the waiting room with all the other poor patients waiting to be called for my chemo. I trot after the nurse and when I reach the infusion room, I get two painful large shots in either the stomach or the upper arms.
Afterwards, I eat out for lunch and take home something for dinner. I come home and nap. The shots make me very sore, so I lie in my bed on ice packs. I rarely go out for dinner. The chemo zaps my energy and I keep a low profile for the week. I may do some light duty chores, some reading, some writing and be on my computer. Sometimes I just feel like lying on my La-Z-Boy and watching TV. Even grocery shopping is problematic because carrying bags hurts my arms and stomach.
And, of course, all cancer survivors are familiar with the side effects of nausea, diarrhea and constipation. Fortunately, I have learned to take the medicine the doctor prescribed right away to keep the symptoms from manifesting.
I hate these weeks and dread the treatments. I center my life on the chemo and plan not to be busy.
However, here is where it gets complex. I have learned to not love – but to respect – the chemo. It is keeping me alive a little bit longer. It allows me to function the other three weeks of the month. It is the same poison that is saving me. Just like the hearing aids I wear, which are now smaller and hidden behind the ears that enable me to hear.
I have discovered something else. It is not so bad to have a week off, if I look on the positive side. I am an overachiever and feel guilty for lying around. But sometimes, it is good for me to nap when I feel like it, to daydream a little bit and to lounge around and watch television. I do not have to be productive every single moment to be a worthwhile person.
It is these quiet moments that ideas come to me for writing articles, solving problems and praying with a wonderful God.
I seldom wear my hearing aids around the house. After going out socially and straining so hard to understand conversation, I come home exhausted. I use my captioned TV, telephone and computer for listening and communicating. For some people, this silence would be overwhelming, but for me it is therapeutic.
Also, that very same hearing loss later in life introduced me to a whole group of deaf and hard of hearing friends. I have learned sign language and even taught deaf culture in a community college for several years. So, the loss became a huge benefit in my life.
There is still another wonderful advantage to chemo week. I truly believe the nurses, technicians, receptionists, doctors and staff who work in any cancer center are special. What a privilege it is to be surrounded by them! During this week, I get to see them every day. I know their personalities, ask about their families and friend them on Facebook. To me, they are angels on earth.
I even have made friends on Facebook with other patients I met in the waiting room. And every one of these patients has their own unique journey as cancer survivors. I am on a patient advisory committee for the cancer center. And now I am writing articles for CURE
and meeting other survivors who help and inspire me.
So, yes, I have a love/hate relationship with both my hearing aids and my chemo. But most of all, I treasure the fact that the hearing aids allow me to hear better. AND the chemo is keeping me alive!