Metastatic Mysteries: Losing and Finding My Voice
In November 2018, I was feeling weary and exhilarated all at once. I had just traveled the country for several weeks of in-home ethnographies. I loved getting to know the cities and the people. The work was so meaningful because we were focused on disparities in health care and studying how to improve outcomes in type 2 diabetes. We ate Mexican food in Houston; we enjoyed our time with clients. My soul was flying high, but my body was tired from traveling.
Something didn't feel right
I must have picked up a cold on the road. The swelling in my lymph node on the left side of my neck that I had noticed the month prior had increased. And then one day, in total exhaustion, I was guzzling coffee at home. I started coughing uncontrollably and then tried to speak. I could barely speak – my voice was gone. I had never lost my voice before – what had just happened?
The cancer was back
I went to my primary care doctor, and the concern about the increased swelling in my lymph node was apparent. I would need a biopsy immediately to see if this was a cancer recurrence. I whispered my way through my appointment and could barely speak. And when she called me a few days later to tell me that I had metastatic breast cancer, I was able to access my voice again, albeit briefly, to yell the “F” word in my living room, in front of my family.
Confirmed MBC diagnosis
While a series of appointments and tests ensued to address my metastatic breast cancer, I could barely speak - my voice was gone. There was some urgency to get this figured out – how can I manage a cancer diagnosis and get the treatment I need if I can’t speak?
I squeezed in an appointment with an ear nose and throat doctor (ENT) in between my oncology appointments. He put a scope through my nose to take a look at my vocal cords, and asked me to say, “Eeee” and then “Ahhh.” I struggled to make these sounds. “Your left vocal cord is paralyzed,” he told me. As if there was any more room for shock in my life, having just been diagnosed with metastatic breast cancer, I could not believe this was happening. Was this just a case of bad luck –like lightning striking twice in the same place – or were these two events related? I tried to ask my doctor this, and he said it was too early to tell if the events were related. “The timing was impeccable,” I whispered. How bad is vocal cord paralysis? I asked my doctor how many cases of this does he see. “Just a few a year,” he said. This sounded really bad. How could these bad things keep on multiplying? Wasn’t metastatic breast cancer bad enough?
And now vocal cord paralysis diagnosis?
My oncologist and ENT believed that cancer had not caused vocal cord paralysis. The scans showed too great of a distance between the tumor in my lymph node and my defunct vocal cord. Still, I couldn’t stop thinking that these events had to be related. They were both on the left side, not that far away from each other, and as I had said, the timing was impeccable.
Finding an ENT specialist
My ENT admitted that he didn’t have enough experience with vocal cord paralysis to help me, so he referred me to his colleague, another ENT with a unique specialization in voice disorders. Apparently, this was a very, very small subspecialty, that is few and far between. Often such specialists are located in big cities like New York and Los Angeles because they work with actors and singers. In the midst of my double whammy of a diagnosis, I was feeling lucky that a leading voice specialist was right here in New Haven, and that I was able to squeeze in a visit to see him in the midst of an endless sea of oncology appointments.
Working towards getting my voice back
The voice specialist told me that the cause of my vocal cord paralysis was most likely viral and that there would be about a 50/50 chance my voice would come back. In the meantime, he would perform surgery to use collagen to help seal up my left vocal cord so I could speak without losing air. Still, my voice would be weakened, because I would be relying solely on my right vocal cord, but hopefully, it would rise to the occasion and compensate.
Time was now of the essence. I needed to have the voice surgery prior to starting chemo – what if I became too sick to have the surgery once starting chemo? Early the morning that I was scheduled for surgery, I received a call that the surgery would need to be rescheduled – the voice doctor had fallen ill!
Starting chemo before voice surgery
On my first day of chemo for metastatic breast cancer, I still could not speak, as I was waiting for the surgery to be rescheduled. I communicated with my oncologist through pen and paper to answer my questions about side effects. I needed to get my wig situation squared away. I could not speak. I used a text to voice app to go into the wig salon and locate the person who was in charge of styling my new wig.
I had a flight to catch
My oncologist cleared me for the voice surgery and I had it soon thereafter. The surgery was quick and relatively painless, with the biggest challenge being 5 days of not speaking immediately after the surgery, otherwise known as “vocal rest.” With a pad and paper, and a text to voice app, I managed to communicate. My son and I had fun with the app, using British and Russian accents and pretending we were spies. It was Christmas week. With my first chemo in my system and freshly implanted collagen in my vocal cord, we drove to New York City to travel to Israel. We had made these plans prior to metastatic breast cancer – and prior to vocal paralysis. I would just have to somehow make it through the flight.
Being home was good for my soul
Regrettably, being cost-conscious travelers, our flight to Tel Aviv required a long detour in Moscow. When we booked this, little did we know that I would be run down by chemo and unable to speak during this trip. The flight to Moscow was not very pleasant. I couldn’t speak on the flight, but there was not much to talk about with the flight attendants anyway, as they didn’t speak English very well. And I was tired so I slept and slept. At breakfast time, we were served chicken stew -- a regrettable choice, especially while feeling the after-effects of chemo. To make matters worse the connection from Moscow to Tel Aviv was delayed by about 5 hours, so we tried to amuse ourselves in the airport and played with Russian dolls of Trump and Putin in the gift shop, while my son was yelled at in Russian by the shop keeper for messing up the display. Finally, we arrived in Israel. The vocal rest was over. My beloved Uncle Fred met us at the airport and said, “Welcome Home.” I could finally breathe again. Israel was good for my soul as it filled me up with hope and light, while my hair fell out near the Dead Sea.
We must raise our voices to be heard
As the months progressed, I learned that my left vocal cord would remain paralyzed. I will always wonder if my cancer caused my vocal cord paralysis and see these two events as somehow related. The symbolism of being voiceless and having metastatic breast cancer did not escape me. Our death rate is alarming; we are often so young, and so healthy otherwise. I watch my beautiful “meta-sisters” die every day on my Facebook feed. We raise our voices to be heard, but so often feel ignored.
Finding my voice despite paralysis
Just this month, in July of 2020, I visited my oncologist and voice specialist on the same day. My cancer is stable and my voice is stable. I have come a long way since the flight to Moscow with chicken stew for breakfast. I am living, I am feeling good, I am thriving. And I have found my voice and I am using it to spur hope and positive change in our cancer community.
Editor’s Note: We are extremely saddened to share that on Friday, April 9th, 2021, Alyson Tischler passed away. We know that Alyson’s advocacy efforts continue to reach many. She will be deeply missed.
How old were you when you were diagnosed with metastatic breast cancer?