“The body is wiser than its inhabitants. The body is the soul. The body is a messenger.”
― Erica Jong
Brain surgery…say what?!?!
For those of you who read my blog you may have noticed that I dropped off the grid for a bit. I am writing to tell you that I am fine and I want to share my story.
Over the years I have experienced a very strange phantom smell; cigarette smoke. Picture yourself sitting on the subway, on the beach, or possibly at home alone and all of a sudden you smell cigarette smoke. Sometimes it is so strong it effects your breathing. However, there isn’t another soul in sight. Despite those realities you are so uncomfortable that its making you feel as if you are going crazy. Sometimes it can last for hours. Other times it lasts for days. You’ve told various doctors, family and friends; all of whom have either brushed you off or decided it must be your deceased father visiting. This has been my reality for about 15 years.
Scott and I jokingly call it my “smoking ghost”. Fast forward to 2015. Little by little, as the year progressed, new things started to happen. My vision started getting wonky, my hearing was slightly muffled and the allergies that I DON’T have, according to my allergist, were at their worst. Sinus pressure behind my eyes was making me tired and dizzy. These issues were now constant. It was no longer just when it rained or when the crazy trees with fluffy white flowers bloomed. Allergy meds were no longer working for more than 2 hours. My nasal spray became useless. Needless to say, I simply felt like shit almost all the time!
In 2016, after being ignored for years, I changed doctors and told the new one that I was not letting this go again. There was something going on and it is not my dad visiting me. After a good discussion and thorough assessment, she sent me to an ear, nose and throat specialist. We agreed if he didn’t find something we would come back and go in another direction.
Finally, I felt like I would get to the bottom of this craziness! I met with the ENT, who was determined I did have some allergies. However, he could not grasp how my allergies were year round and not somehow seasonal in nature. The test results were inconclusive. Next, he had me come back for a blood test to get a clearer result. He said this was most likely just allergies, but set me up for an MRI just in case.
Fast forward to April 25th. The ENT had tried to get a hold of me several times. My experience tells me that if there nothing wrong…they don’t call, especially the actual doctor. We played phone tag for a bit and that evening, after my class at TAI and on my way to a meeting at The Players I was finally able to get a hold of him. He confirmed that yes in fact they had found something. He set it up not panic me and I heard what he said very clearly, “It’s benign, it’s a brain tumor…it’s not cancer”. I’m fortunate that I have gotten to a place in my life where I could let myself hear one thing…IT’S NOT CANCER. He gave me the name of a neurosurgeon he knew well; one of the best in the city. I was told to call, make an appointment and say that he sent me.
As I sat in my meeting I was in a complete fog thinking…I have a brain tumor? You see, I had joked about this for years. I researched it and could not find evidence to lead me there, but somehow I had known it was a real possibility. I didn’t hear much in that meeting. All I could think about was how I tell my husband without panicking him. I would be sure to start with, it’s going to sound bad and scary, but ITS NOT CANCER. We got through it together and started planning for a trip to the surgeon. Honestly, the idea of the surgery itself was scariest part. Brain Surgery…what??? Now, the fascinating thing is that when you talk to a surgeon they are like…yeah dude if you’re gonna have a tumor this is like the best kind to have. Really? The best kind to have is to not have it, but ok. Needless to say he took the edge off and helped us both to calm down.
To be honest I had started thinking about all of the symptoms that made me feel awful and crazy over the past year and for all intents and purposes I was relieved. Maybe I would feel better, think more clearly, and have more energy. Then I went further, maybe I would stop biting my nails, want to eat better, start creating like mad! Wouldn’t that be somethin’?!
May 23rd, the surgery date, came pretty fast. I felt good about what was to come. It wasn’t cancer, it was surgery. We kept the news amongst close friends and family until after it was over. Though I knew in my gut all would be fine I didn’t need the added stress of people worrying or getting me worked up. People have surgery all the time and I had one of the top neurosurgeons in NYC. I knew that I would in some way feel better after it all and that there were great possibilities. My biggest fear was the surgery itself. One can’t help but panic just a little bit when a doctor tells you there are going to cut a hole in the front of your head, break down and removed a tumor, then put you back together. I thought, what if I wake up in the middle? What if something slips and I end up bent over and drooling? These were real fears.
As we waited outside of the operating room just before surgery the anesthesiologist walked Scott and me through the process. He asked if I had any questions. I asked just one, “I won’t wake up in the middle will I?”. He said that if I did they had done a really bad job. I replied, “That’s what I’m afraid of!” With some assurance it was clear that I would NOT wake up and all would be fine and I was. On the operating table I was asked to count backward from 5. I remember getting to 4. Then I started to hear voices. My eyes were closed and I panicked a bit. I started saying (or trying to say) “I can hear you…I can hear you I’m not asleep”. I stopped and listened only to realize I was in the ICU, it was 5 hours later and the surgery was over. Thank God! I guess they did a really good job.
The surgery was 4 weeks ago. I am up, getting around and feeling pretty good. I have some energy and I can once again get back on my computer to write. I have 1 week left then I’m back in the real world. It has been quite a ride. My mom was with us for two weeks and Scott’s back in the thick of it with his job hunt. Life is moving and I am happy to say my mind is clearer than ever. I wish I could say the nail biting and bad habits have disappeared, but that would be a lie. “NOT CANCER” is good enough; I don’t need miracles.
So here’s my reason for sharing all of this. We all need to remember that no one knows your body better than you. If a doctor doesn’t hear you, go to another doctor. Many of us have a tendency to take no for an answer. Especially when we don’t understand something ourselves. I smelled cigarette smoke for most of my adult life. I accepted no. I accepted that there was no answer so it can’t be real. I understand why someone might ignore it. It is not real for them, but it has been very real for me. Never again.
My seizure neurologist, who was wonderful by the way, asked me a lot of questions. Her goal was to understand my symptoms and what it has been like for me. She also needed to clearly assess if anything may have been caused by seizures. She said to me at one point, “You must be angry”. I told her, “Yes, I have told every doctor and not one even reacted to it”. In the same breath I also said I was angry at myself for not pushing it. She looked at me with a pinched nose like she wanted to reprimand someone and said, “No, this is not your fault.”
Never let go if you know there’s something wrong. I truly do understand that this not my fault. We go to doctors for help. We trust they know more than we do and they will help. With all of that said, you know your body better than anyone else. If it is telling you something don’t stop until you find someone who will listen. I am incredibly fortunate, but I can’t help but think that I knew something wasn’t right for a very long time. Doctors ignored my symptoms until I made them listen. It terrifies me to think that if it had been cancer…I very likely would have died long ago because it had gone untreated. I am lucky. But, I can tell you I will never do that again! I love my life and I plan on being here as long as I can and so should you.