Wednesday, January 29, 2020
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.
I was a bit apprehensive to leave the country for two weeks – the farthest I’d traveled since being diagnosed with cancer, and I felt good the entire time out of the country. We hiked the northern coastline of Italy, swam in the Mediterranean, Sea, and lost ourselves in the alleyways and streets of Venice. I forgot I had cancer for a few weeks and enjoyed my wife and the world.
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.
Posted by JJB at 6:30 PM
Sunday, January 19, 2020
Today is my 56th birthday. In few days, I will also be three years into my cancer diagnosis. These dates will be forever linked. I will be forever linked to cancer. It is my hope I’m around to “celebrate” that linkage for years to come. I try to measure my worth on this planet by, among other things, the quality of my friends and the quantity of positive karma I share. Good things do happen to good people. This 56 year old living with cancer is a blessed human with some pretty stellar family and friends who definitively feels the good karma today. Thank you.
Happy Birthday to me.
Posted by JJB at 9:20 AM