Almost too much…

At the end of last year when I usually do my Brain Matters fundraiser, I was starting to have several physical problems. I wasn’t able to talk louder than a whisper. At first, I thought it was due to a cold, or a virus, or worst-case scenario COVID, because at that time that’s what everyone was extremely worried about, but I didn’t go many places and wherever I did go I wore a mask. I was diligent about my vaccines, I took the COVID tests and I tested negative…my hoarseness persisted for days, weeks, and then it became months. I decided to see an extremely good Ear, Nose and Throat doctor (when you’re a professional patient like me you only go to the best); this doctor said that with my history of one paralyzed vocal fold that I would benefit from a vocal fold injection. My radiation oncologist at Mass General after I completed my Proton radiation therapy told me to be on the lookout for certain things, some of those things had peered their unfortunate heads, others had not. This one had not been mentioned. I decided to give the vocal fold injection a try, it was composed of Restylane. I had imagined myself having Restylane perhaps for wrinkles one day, not a paralyzed vocal cord. This injection turned out to be effective. it lasted for almost a year, not really long enough when one needs a voice. I didn’t imagine that this was going to be something I’d have to have on a continual basis, something I would have to add to my yearly beauty/health regimen, along with a haircut, hair highlights, my brain MRI, a mammogram, and a few other things I can’t remember.

I began to have a cough that persisted after having had my injection ten months beforehand. My doctor thought since it had been a while since I had an injection, that my cough would be helped by a second injection. There was no mention that the sound of my voice would sound different…worse afterward. I had the second injection and almost immediately the sound of my voice was BAD…very BAD. My doctor told me it would improve, to just wait a few days. I waited a few days. I ended up waiting ten months and I never spoke louder than a whisper really. Those were some very sad, frustrating months. During this time my cough got worse, it was determined also that the vocal fold injection I had for my cough did not help and that what I needed for that was a palate injection. This would also help what had become additional swallowing trouble. I found another ENT whose specialty was swallowing. I had come to learn that most all ENT’s have their own specialties: voice, swallowing, ear, sinuses, facial surgery, pediatric ENT, probably more. I was choking on most of my meals and water was coming through my nose. I found a doctor at Weill Cornell where ironically my first brain surgery happened. Finding this doctor was quite the Easter Egg Hunt, but he helped me tremendously. Once I had this palate injection which I was told was supposed to be lifelong (although I found out I may need an additional one-it’s yet to be figured out), I could have my third vocal cord injection.

I wondered if I should go to the same vocal fold injection doctor. Should I go walking down memory lane? Would another one of these vocal fold injections do me any better than the second one? My vocal fold ENT felt that he may have under dosed me and that’s why my voice didn’t regain its fortitude. There was no way to know for sure. I have been somewhat of an experiment in quite a few different medical areas for many years. It’s why to a large degree I am still here. It was decided that I would have a different type of injection the third time-a silk injection, but I would have to wait a month after I had my palate injection. I was busy!

Just before I had the palate injection, as I was waiting around with my almost non-existent voice, I got a call from my sister at 11A on a Friday morning at the very end of May. It was unusual for my sister to call me at this time, we usually texted each other. If we are going to call each other we text to find out if it’s a good time to call. I picked up the phone and my sister was crying, she said she just got a call from the police, they were at our mom’s house, that they told her that mommy had just had a massive stroke. The ambulance was going to be taking her to the hospital. I used to live five or ten minutes from our mom, but about four years previous my husband and I had moved. I was now about forty minutes away. I told my sister Johnna who lived in Connecticut that I would go to the hospital and see mommy there. I would call and let her know what was going on. Nothing was the same after that call. Nothing was good with our mom after that.

My mom ended up being paralyzed completely on her left side, not able to walk, or swallow, she went to the bathroom in a diaper, she lived in a nursing facility…getting worse and worse for almost a year. She was everything she told my sister and I she never would ever want to be. Before this happening to her, she did the NY Times crossword puzzle every day including Sunday, she drove, she shopped, and she cooked. She was funny. She researched and explored everything. No one should have to live the way she lived the last year of her life. It was not living. I have been very sick throughout my life; I so hope I don’t have to end up being the way she was.

Right before I had my third injection, our strong fourteen-year-old dog Max, a beautiful blond Jindo (looks like a mix between a husky and a shepherd) …who we love, love, love. Max has been there for me through so many extremely difficult times; he has sat in bed with me by my side. He had some kind of “event”, called vestibular disease. My husband and I thought he was dying. Now it seemed like he was sitting by my mom’s side. My mom adored Max. We quickly took him to the veterinarian, and she said that what he was experiencing was not fatal, but it would affect his abilities. There was no telling how much and for how long. It did affect his abilities. He has had trouble walking since then immensely. Beforehand he was a boy that loved to eat anything and now he is a very picky eater. We are so glad he’s still in the world, but it’s very clear that he’s on the older side.

I had my third injection, the silk injection. Different than the second injection. It was chock full of confidence. My voice is better that it was before the injection eight months ago, but still not great. I’m working on finding other solutions. There are thoughts of perhaps a vocal fold implant. I’ve done voice therapy, many kinds. Minor improvement. I continue to research and to look at the bright side.

My mom died two weeks ago, just three weeks shy of a year from having had her stroke. I can now finally remember the brighter side of her life. I can remember things like when we were at my daughter Jamie’s wedding, coming on her sixth anniversary now. We were all so happy! Love you and will miss you mom!

This has been a very hard year…almost too much.