Mónica Solis was living her dream life, she had owned her own business for over 20 years. Suddenly everything changed on 31st July 2019. Mónica had been struggling with pain in her neck. What started as a trip to the Orthopedist to discuss her pain she was soon diagnosed with an Arachnoid Cysts.
Here is Mónica’s Arachnoid Cysts Experience
At the beginning of 2018, I was showing symptoms that I did not want to pay much attention to. I had been struggling with fatigue. I would literally throw myself in bed, add to this morning sickness, which I thought was the result of some weight loss pills. All this caused me to enter a state of absence, where my mind disconnected and was not tuned with my body. At the end of June 2019, I was having night pains and numbness on my hands and fingers, once again I ignored it and believed it was due to bad sleep.
Then the pain began during the day and my vision started getting worse, I had to change the prescription on my glasses. I started the process to find out what was wrong with me. I was given an X-rays and MRI. When the doctor reviewed the results he detected a white mass close to the cerebellum.
He asked ‘How long have you had this brain tumor?’ I said “No, doctor, you must be wrong” He insisted and after an uncomfortable conversation he realised I had no idea what he was talking about. After that, everything happened so fast that I did not have time to react. I was in shock. All I could think of was “I’m Will die”.
l had a craniotomy on August 22, 2019, but they couldn’t remove all of it. A week after l started leaking fluid from the scar. Doctors tried to fix it with a lumbar drain for a while. Unfortunately, it didn’t work. l had a second brain surgery in September 7th 2019. 29 days later I got a serious infection from my scar and the CFS (Cerebral Spinal Fluid) came out from the scar I was scared to hell, l couldn’t understand what happened? My doctor considered a VP shunt to fix it once for all.
The surgery was scheduled on October 8, however, by that time I had been without drainage for more than 48 hours and the gauze that was changed every twelve hours was completely dry. Two hours before the surgery, the doctor checked me for the last time and because I had not drained fluid for almost three days, he cancelled my surgery one hour before..
I had an MRI on November 2019 and doctors found out l still had a fistula, and as a result, l have cyst out of the skull close to my cervical. Everything went wrong and l ended up spending almost 3 months at the hospital. Then I did physical therapy to help me to walk again, work on my lack of balance, dizziness and blurry vision. On January 18th l saw my doctor and he believes that my cyst was not life-threatening and therefore he didn’t want to do any more surgery. He told me to go back to my normal life.
3 Months In Hospital
The first month when they put me the lumbar drain l was so angry. I never ever experience that level in pain in my life. I was so high because the drugs but l still remember one-time l asked my doctor to give me something to die. At some point, l felt l couldn’t take any more pain. They gave me sleeping pills 24/7 to keep me quiet.
Then after the second surgery l got into this huge depression, I didn’t want to see or talk to anyone besides my mom and Yuko. I used to cry all day long, blame on god for my situation. It took me 6 months to become more stable and positive.
The last month into the hospital l was more conscious and to make the days more enjoyable I made friends with the nurses. I knew when and how the shift changes were, I could joke and get to know them thanks to the talks where they told me about their children, boyfriends or husbands.
It sounds funny but some nurses told me: “Monica, you are mistaking this with a resort, this is not a spa, you must to leave soon”. The day l left the hospital several nurses came to room to wish me luck and on the way to the elevator some of them clapped when they saw me go
How are you doing now?
Now every six months I have an MRI and every two months skull ultrasound to check if the cyst is growing.
I am so grateful to be alive. I’m learning how it means to live with the side effects such as movements of my head without my notice, blurry vision, dizziness, fatigue and lack of body balance. Every day, l have been experiencing how my body moves without my control. Many times, it makes me feel insecure because I feel like l fall down anytime. Also, I notice that when l drive to the hospital where it is far from my home. I feel like the highway and cars move far and close to me constantly and I cannot see well, and I get dizzy for a few seconds until my eyesight is adjusted.
Re-evaluating My Life
I stopped making plans for the future and I committed myself to meet the short goals of my good health. Somehow, my life forced me to slow down in a very unexpected way, but l don´t fight against it anymore and I am so thankful for my life did that to me.
Today, I can see how much I needed it. My life had no ending with a routine of work, work, work, and work with full of responsibilities all the time. I forgot how to enjoy my life. I cannot remember when I see beautiful rainbows and clouds in the sky. But when I was in the hospital, l spent so many afternoons seeing the sky from my bed making stories about them like when I was a child. Although there some things l struggle with daily, l am so thankful for my brain that is doing the best effort to reconnect the pathways that are still broken.
What is the toughest challenge survivors face?
After I went through all these experiences, I finally could say that my toughest challenge that l have been facing has learned what “being patient” means and I made this word to become my friend. Today, I live day by day to understand what my body needs to recover to be well.
I have been dealing with trust and control issues in my entire life. There was not even one situation that I could not control anything. l had this strong belief if l was not in control of everything, that made me look weak in front of people. But after this life-changing event, I had to surrender to everything about my mind, my body, my emotions, my soul while I was in the hospital.
Honestly, I gave up controlling everything at first because I had no choice. Then actually, l was being resigned from everything else which was in my control.
First, I trusted that everyone was doing the best for keeping me safe and alive. Second, I trusted in the wisdom of my body, knowing what it needed to recover itself step by step.
From the shocking experience of two brain surgeries with all the complications and the medicines doctors gave me at the hospital, I have been learning how to trust in life and the time l need to recover myself. Even though I had been frustrated so many times because I wished this process could go through faster, l understand that was not in my control and l had to be patient. Also, l am so happy that my mind came back into my body. On top of them, these experiences made me discover the strength I did not know that I had before instead of making me weak.
Any advice for people or loved ones that get daunting diagnoses?
Not in a million years, nobody ever wants to hear the words “You have a brain tumor.”. I never expected that I would one day be faced with this diagnosis. My life-changing journey started on that day. While I have been dealing with the recovery process, I realized that these words led me to confront some of the most difficult conversations of my life with my family, friends, and even with my doctor.
When I first talked about my tumor to some of my close friends, their first reactions were serious and shocking, in their faces, I saw them imagining my death while they said, “You will be fine!”. No one is prepared to face such a diagnosis, it takes an incredible amount of love, sympathy and compassion. However, I would say let the person be without imposing any positivity. Many days we are in dark places, which we need to embrace to get through and see the light
All of us who have experienced complex health issues know that along the way we will have to deal with two battles: physical and emotional recovery. But I was discovering that those of us who undergo brain surgeries have a third battle: the mind. Losing consciousness was one of the scary things l had ever experienced. You hardly recognized yourself. That is why I tell you: don’t let time pass, any anomaly in your body, no matter how small it may seem, is a sign for concern.
How has your life changed if at all?
Currently, we are still in a pandemic of COVID19. l barely go out and l do not feel comfortable with people coming over to my place, so I basically have been staying the same life as I was at the hospital still. I wonder how my new life will be after the pandemic and getting out more.
What l know for sure is that after I went through these things, they allowed me to get to know a new version of myself. The unbelievable physical pain I experienced showed me my unknown force. Even when I have been facing with very unfortunate news, I earned so much courage from them. Now with these, I value the scars of my soul and body.
l know it sounds strange, but I decided to keep shaving the back of my head where the scar and hole are at. l like touching and feeling them as of my victory marks, and as a positive reminder of what I went through as of “The good and the bad things”. My life changed in one second, but l can see it for good now.
My priorities have been changed now. First, it comes to my family, then my friends, my values, and my work. Sometimes, l am amazed by how I react completely different than who I used to be in some situations. It seems I was a different person and l proudly can sure that I became a different person. A more calm, more understanding, more caring, more open version of me. I overcame many physical and emotional complications. Now, I feel confident to say that l can face everything in life.
I share my experience and my journey via social media
Who is your personal hero or are your heroes?
My mom is my personal hero. As a family, we have been through a lot. My brother passed away 10 years ago and my father has been a disabled person for over 20 years. She takes care of him by herself. As you can imagine when we found out about the brain tumor. She was devastated thinking she could lose the only kid she has. One thing that amazed me was that she never showed me any worries she stood positive and calm all the time into the hospital. She was taking care of me with her love. She always holds me with love, she motivates to keep going and never ever give up. She was my strength my rock!!.
Tell us something about yourself that people probably didn’t know?
l used to have this strong and tough personality and barely showed my emotions to people.
After the surgery, I felt like l was on a roller coaster. l went up and down so many ways. l got into this huge depression as I have never experienced before. Actually, I think I have been still dealing with it.
The first few months, I cried as I had never cried this much before. Even now I sometimes wake up and I start crying without any reason and l cannot stop but I think it because I still feel broken inside myself. Fortunately, my emotions became more stable for the last couple of months. I feel so happy to allow myself for crying it’s very liberating.
Recently l joined brain tumor survivor groups. I discovered a sense of empathy that I didn’t know existed on me before. Knowing these amazing stories makes my day and inspiring me to be better.