Liz and I went on our first real vacation this fall since my
diagnosis. We had wanted to explore Italy for years – since our honeymoon jump
off point in Rome in 2015. We spent two wonderful weeks roaming throughout the
country. From the southern coastline of Sorrento to the northern coastline of Cinque
Terre, to the breathtaking waterways of Venice, it was truly a trip of a
lifetime.
Upon our return, my ears seemed a bit messed up. I shrugged
off the fullness, accompanied by ringing in my right ear to the long flight
across the Atlantic. Surely, in a few days, it would clear itself – I said. Weeks of this, however, began to weigh on my mental state. It was difficult to stay in conversations at work as well as at home. The constant ringing and comfortableness in my ear found me withdrawing from people. It was clear to me my ear
was not getting better with time and I needed to see a doctor.
An ear examination coupled with a series of extensive hearing
tests confirmed that indeed something was a miss with my ear. While I could
hear the middle register of sound – the register that includes voices – I had lost the ability
to hear the lower and the upper registers of sound in my right ear. The diagnosis was not straight forward however.
The ENT doctor diagnosed that my hearing loss was due to a possible infection that entered my middle ear. Maybe due to flying, maybe not related
at all. The treatment would be a course of steroids. But treatment needed to begin immediately. If treatment was started within the first 30 days of trouble, according to my doctor, my odds of having hearing return was around 60%. And that was the BEST odds he could give me. My appointment was on day 20. I would need to
begin the steroid treatment right way if I stood any chance of regaining my
hearing.
But because I’m far from a “normal” patient these days, I needed to clear the treatment
plan with my oncologist. I was fearful the course of steroids would interfere
with my clinical trial. For a brief but painful moment, I had to think about the real
possibility of abandoning my chance of getting my hearing back in order to
stay in the clinical trial that may very well be keeping me alive. It was not a
comfortable space to be in. Thankfully, my clinical trial team was quick to respond
the steroid treatment would be within the clinical trial guidelines and I could
commence treatment and stay in the trial.
Several weeks of steroids brought the return of my hearing
but did not rid the ringing in my right ear. As it turned out, I discovered my oncologist
would have had to stop my trial had my hearing not return to normal
levels. Apparently, there was more conversations
had than I was aware of among my clinical trial team. I discovered at my
recent trial appointment that had my hearing not return to normal levels, I would
be removed from the trial for fear it was the trial itself (the vaccine) that caused
my hearing loss.
Funny how cancer allows one to willingly trade important
pieces of your health as long as you stay alive. Yes, I would have – I believe –
forgone treatment for my hearing and chanced it not return in order to
remain in a double-blind clinical trial for greater fear it is the trial that
may be keeping me alive. Basically, living without hearing is worth living. We living with cancer, make those "trades" more often than you know because we get that "living" is worth it all. A beautiful gift of cancer. Gratefully, I didn’t
have to make a choice. My hearing has since returned to normal; I still have
ringing in my ear that may never go away; I remain in my clinical trial. I’m
alive.
