Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
Nothing is worse than the long-term effects like chemo fog and going deaf. I do think that we need to report these medications and hope research will try to develop treatments with fewer side effects.
Many of us joke that of all the things we lose, with losing our mind being the worst. Somehow this banter doesn’t seem very funny with chemo fog or being hard of hearing.
I was born with a severe hearing loss, worked as a rehabilitation counselor and have lots of friends who are deaf or hard of hearing. Several of my friends are also audiologists, interpreters and American Sign Language teachers. I helped to establish a local support group for hard-of-hearing and deaf people through the national Hearing Loss Association of America, which existed locally for over 30 years. I can sign with my deaf friends, so one would not think losing more of my hearing would be a huge blow.
But it is much harder than I ever thought. I never identified myself as part of the deaf community or culture, since I had some hearing and ASL was not my first language. I also was told by deaf people that because I am oral and was able to use a telephone with my hearing aids that I am not part of this unique culture. I taught about Deaf Culture for several years at the college level. I explained to students that with their own language, clubs and schools, the deaf are indeed a fascinating minority culture within the USA.
I felt I could somewhat identify because of the difficulty of lip-reading and the career and personal discrimination we faced. I was blatantly told at one point that I couldn’t handle a job promotion because of my hearing loss. I had no recourse then, since there was no American with Disabilities Act then to protect me.
However, as my remaining hearing has gradually slipped away from me, I become increasingly frustrated. No longer can I use the telephone and depend on captioning on the phone or Bluetooth in my car. I am very social, and the worst part is I can no longer be with a group of people and catch anything. I am basically OK with one or two people in a quiet setting where I can lip read and hear with my aids. With a wonderful Bluetooth pen, I attend programs and I “may” hear the speaker, but never catch any of the questions in the audience. Church has totally changed for me. The minister makes sure I hear him, and I sit in the front, but prayer requests, announcements and anything said behind me is never understood. I only can hope the names and events will show up in the newsletter.
Recently I attended a retirement party and was so frustrated I left in tears. The party took place in a very noisy restaurant and there were people I knew and loved. Every single conversation was frustrating because I caught maybe three or four words and could not understand what anyone was saying. Imagine listing to a television show and having only one word in a sentence understood. I also have had terrible experiences on the telephone where I could not understand people and they have hung up on me.
Most of my friends and none of my family know ASL, so I have to depend on what little hearing I have left and lip reading to communicate.
Of course, you may ask why not get an interpreter. They cost between $30 and $80 dollars an hour, depending on which part of the country you live. They are worth every penny but I cannot afford to take them to all the social gatherings.
Many of us are suffering from hearing loss because of the lifesaving chemo we undergo. Some of us do not even know it because it is sneaky and gradual. But there does come the day that we realize our lives have changed. Some chemo is stopped until hearing returns, but not the kind that I take.
I often think the diarrhea, the nausea, the painful shots I have endured; the bone marrow biopsies twice a year are discouraging. But nothing is worse than the long-term effects like chemo fog and going deaf. I do think that we need to report these medications and hope research will try to develop treatments with fewer side effects.
Being a cancer survivor, like getting old, is not for sissies. However, I have to remember the mantra — I am alive and that is what really counts!