Quiet

I lost my voice eight months ago. Not my blog voice, I mean the literal voice that orders coffee and answers the phone.

A couple days before Halloween last year, my voice went hoarse, and I started to cough. I was in Disney World at the time (of course I was), and figured I’d overdone it screaming my head off on Splash Mountain. I woke up Monday morning, back at home in Boston, with no voice.

I really couldn’t talk. I already had a treatment appointment scheduled at The Institute, so I got to see someone right away. I struggled to give my name and birthdate at check-in. The reaction from the staff was total confusion. Whatever this was, it was freaking inconvenient.

My doctor was, quite helpfully, alarmed. She ordered an MRI not just of my brain but my neck, referred me to head & neck and neurology. I was on a trial at the time, and the study coordinator came in. One of the trial drugs was atezolizumab, and I was so sure that drug was to blame, given the huge range of weird side effects associated with immunotherapy. It was impossible to explain this. My labs were a mess, but I think they would have held treatment anyway. They sent me home.

As I was walking home, the study coordinator called me. Even though she’d just seen me 15 minutes earlier and knew I was mute, she was getting increasingly frustrated on the phone. “I can’t understand you.” “It’s my voice!” I kept trying to yell. I know what I meant by it; it’s my voice. It’s not me. She eventually hung up on me.

When I got home, I cried. I couldn’t make a phone call. All I could think was that I’m not just a patient. I have a job, at which I work remotely. I have a normal life, with family and friends, none of whom live in Boston. I need to be able to talk on the phone. I need to sound normal. I struggled through a few phone calls as these follow-up appointments were scheduled, sending anything non-essential to voicemail, wishing, since we had one of those patient portal apps, that they would just schedule me and send me an e-mail. What was I going to do, object? “No, Tuesday won’t work for me.” I couldn’t speak! I needed to know why. Now, and it had to be fixed. There is nothing lonelier than being without a voice.

I will say the problem got worked up about as quickly and thoroughly as it could have been. Head & Neck was first. Seeing the other patients in the waiting room, I had a sense for what would be in store for me when I saw the doctor, the kind of treatment I’d get. This not me, I reminded myself. (It’s my voice.) Unlike a lot of the patients waiting, I got to go into the exam room with the armor of not looking sick. But if there’s any reciprocal effect from the physician’s side, where not looking sick serves as a reminder that I’m not my cancer, I haven’t seen it. At my appointment, I first saw a speech pathologist who told me to thicken water with cornstarch so I didn’t choke to death. I’d rather choke. Are there not treatments for things like this? Exercises, anything? Then the doctor came in. She recommended a tracheostomy. That was her first and only suggestion.

I’m not sure I have a better example of how dehumanizing cancer can be, how you get stripped of personality. I believe this has to be even more true for young patients; we’re not the textbook death case, but there’s no adjusting for that. She can see me, that I’m 35 years old, lucid. If I’m dying, it’s not this second. I walked in here on my own power. I just couldn’t talk. And I’m supposed to consent to a trach? No one even knew what was wrong with me. But who cares, right? My life has no value now.

The MRI was normal, and the neuro consult revealed nothing. That team was really wonderful, and their workup was so thorough. I felt like I was on House. Unlike on House, I did not have GBS. They also tested me for myasthenia gravis, which was one I had to look up. I got hopeful when another doctor I know told me he knew two people who had it on PD-1 inhibitors. The test came back negative. I still couldn’t talk. There is nothing peaceful about not being understood, and I would just dread the sound of the phone ringing, or approaching the counter at Starbucks, or having to say my name and birthdate to pick up refills at CVS. In the meantime, I tried every supplement, every cough syrup and spray I could find, swallowed spoonfuls of honey and fully trusted my acupuncturist to venture into the pharmacies in Chinatown and bring me back tinctures and supplements with no English characters on the labels, which I happily drank. Nothing helped.

Things went better at the Brigham, which is of course not a cancer hospital. I saw an ENT who scoped my throat and diagnosed vocal cord paralysis. He didn’t mention the cancer. He offered to inject the cords with something like Botox or wait to see what happened. I was a normal person, seeing a normal doctor. I opted to wait. This was around December. And now, with COVID and the deferral of elective procedures, I’ve been waiting a while.

My voice has improved over the last few months, increasingly so as I put more distance between myself and the atezo, which I still blame for this. I’m intelligible, at least, but it’s not enough. The coughing is still an issue, and I’m particularly sensitive about it now; I don’t want people to think I’m out there, spreading some nasty COVID germs. I expect more, think I deserve more, metastatic cancer or not. My new center here in Palo Alto set me up with an ENT for evaluation as soon as I asked. Again, not an oncologist, just an ENT. And a singer! (Of course I looked him up.) So I’m optimistic I’m not just going to get the lost-cause special and walk out of there with a trach.

Still. As I look ahead to my appointment next week, I can only think: please understand me.

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