What was life like before diagnosis?
Life was life, I suppose. I’m from upstate NY. I worked full-time as a Keyholder at GameStop. I loved hiking and anything that would bring me to the water. I would hang out with friends frequently and loved snuggling my animals. I enjoyed being an aunt as it made my heart feel so full and it still does. I was married just over a year to my now ex-husband.
What happened that led to your diagnosis?
I started having many debilitating headaches, dizziness, and eventually seizure symptoms. I had dealt with these headaches for at least a year and had seen my primary care doctor on multiple occasions. She told me it was anxiety, prescribed some meds and that was that. Although I didn’t know it was a seizure at the time, the first time I had experienced one was at work and it was just me and one other customer in the store. I was cashing him out when all of a sudden I felt the most intense panic feeling in my chest that I’ve ever felt in my life. Then my ears started ringing so loud I could barely hear the man speak. My eyes went into tunnel vision. I was so dizzy I had to hold on to the counter to hold me up. I barely heard the customer ask me if I was okay. I replied, “I… don’t… know..” I’m unsure if I was talking in slow motion but it felt like I was as my eyes uncontrollably darted back and forth. I don’t recall how long this lasted for. I felt like I was in a fog but at the same time I was aware of everything that was going on, everything I was experiencing. Eventually my body calmed down and I assured the man I was okay and claimed my blood sugar was probably low because I hadn’t eaten yet that day. I think I was trying to convince myself that was the case more than I was trying to convince him. I cashed him out and he went on his way. I called in a part time employee so that I wasn’t alone. I looked at paperwork and saw my handwriting had trailed off downwards and got more and more messy. Something wasn’t right. These started happening more and more and I called them “episodes.” Having remembered the sudden immense panic feeling and ringing ears, I always knew when an “episode” was starting so I would sit down and wait it out. Eventually I went to have blood work done and then go to see my OB/GYN. At my appointment we started talking about my strange symptoms. I told myself maybe it was the new birth control. I started having seizure symptoms while speaking with the doctor. I explained these “episodes” happened pretty often. She told me they could be seizures, called my husband to pick me up and sent me directly to the ER to get a CT scan. My parents tried to talk me out of going in case it was nothing and I ended up with yet another medical bill for no reason. I wasn’t taking any chances and went anyway. The doctors at the ER didn’t seem to take me seriously but reluctantly ordered the CT scan anyway just to be sure. Eventually a doctor came in, sat down, and explained that I had a mass on the right side of my brain in the temporal lobe. I kept very calm as I listened but I couldn’t believe what I was hearing. This couldn’t be real. I was only 27. I’m too young. He showed me the scan and pointed out the mass. In the fog of it all, I remember the words neurologist, neurosurgeon, possible cancer, they’ll call me when, etc. It was so surreal and still is to this day, over 6 years later.
Tell us about your history with CCM?
They found the mass August 18th, 2017. After a few weeks of the cancer scare, I got a call saying the MRI showed it was a “cavernous angioma,” as they called it then. I was told I would still need brain surgery as I was at risk for a stroke. A few months later after countless tests and scans, I was on the operating table November 7th, 2017 to remove the angioma from my brain. It was my very first surgery, my very first time even being put under for any sort of procedure. I woke up in the ICU with 23 staples across my head which turned into 25 staples after they look the drain out. I vomited every 10 minutes or so until about 3am. I found out the next day that there were calcium deposits in the angioma along with iron deposits surrounding it so they couldn’t get 100% of it without risk of serious damage. Because of that, I have a literal hole in my brain that shows up on scans or as the neurologist called it, “a good chunk of brain missing,” along with some metal hardware on my skull. The doctors said I may have had it my whole life and for whatever reason it “became active,” but they couldn’t be sure. Since my parents are too afraid to know if either one of them carries the gene, they’ve refused to get tested so I don’t know if it’s genetic so I have worries of it coming back or developing more.
How has your life changed since diagnosis?
Since my surgery, I’ve never felt the same in a way I can’t describe. I’m just different. On the outside I look “normal,” but most times I just feel like a shell of myself. I deal with memory loss often, occasional slurred or mixed up speech, and sometimes uncontrollable darting eyes for a second or two. I see a physical therapist to help with fluid that seems to build up in the back of my head to relieve pressure, likely from the metal plate. That side of my head is very sensitive to this day because of permanent nerve damage. A little over a year after my surgery, my husband at the time left. He couldn’t deal with it being his turn to care for me and support me to help me heal mentally since it had always been the other way around. I could function, I just struggled mentally grasping everything and my anxieties were ten times worse. He said he wasn’t meant to be a caretaker. All he could see and point out were my weaknesses. He had no patience for my memory struggles and anxiety. Frequently I was told, “Other people have gone through the same thing and they turn out just fine, not like you.” My response was that other people have gone through the same thing and died; that it’s a blessing it didn’t go that way. That everyone is different. He compared my major brain surgery to a bad car accident he was in over ten years prior and told me he would have rather gone through brain surgery and essentially told me to get over it. PTSD wasn’t an option for me in his eyes. I wasn’t the same and he wasn’t happy anymore. So he packed up, took our dog, and left the state. I digress, this story isn’t about him. It was very hard to go through all of it, but I have since realized I am better off not needing to feel guilty anymore for something that happened to me that was out of my control. I was brave and came out on top. For that, I am grateful.
What are the good things happening in your life right now?
About 8 months ago, June 17th, 2023, I remarried to a man who understands chronic illnesses and permanent damage are not in my control. A man who loves me for who I am and what I’ve been through. Someone who tries to the best of his ability to understand the things I can’t fully explain. He sees the strengths in me that I don’t, instead of pointing out the weaknesses I’m already aware of. A man who doesn’t make me feel small, who says he’s proud of me. I’m an aunt to even more children now and I love every second of it. I’m still just a nerd who loves her animals and I still enjoy nature; my love for the ocean has grown exponentially. My dream is to move south near North Myrtle Beach, SC with my husband and live by the ocean, smelling salt water in the air and feeling the hot sun and sand on my skin. My dream is to be somewhere that feels like I’m where I belong. I suppose the silver linings would be the hard lessons I learned, toxicity removing itself from my life so I can grow, and knowing that when it comes down to it I can put on a brave face and overcome whatever life throws at me. I may not always feel it but I learned I have a strength inside I probably never would have even realized without this experience.
How has the Alliance to Cure Cavernous Malformation impacted your Journey?
Finding this organization was so helpful. Knowing there are others out there who fully understand what it’s like, although I feel bad that they do. However, it is helpful to see others share their inspiring stories. Almost all of my doctors and specialists, that I see for various reasons, ask why I had a craniotomy and have never even heard of a cavernous malformation, and I have to explain it to them. The mission to spread awareness, educate, and research to find a cause and a cure that doesn’t involve life-altering/life-risking surgery gives me hope that someday it will happen, that others like me in future will not have to endure what I and so many others like me have endured.
What are your thoughts about the future? What worries do you have? What are you hopeful for?
Currently, I’m just trying to live day by day. I have some other health issues that need to be figured out so I continue to focus on my health. I still worry about possibly going through this again and having more brain surgery, especially in the medical climate we live in today. My hopes are that I won’t and so I try not to dwell on those thoughts. Like anyone else I have good and bad days, but overall, I’m just striving to be healthy so I can make my ocean dreams come true. I believe it can happen. If I can go through all this, I can get to my ocean. I hope that a cure will be found and with growing awareness I believe that can happen too. There is so much love, bravery, and strength in this community and I can’t wait to see what the future brings for all the survivors and fighters, whether they’re fighting now or those that will be fighting in the future. Whatever the situation, there is hope and to us, that means the world. I send my love to fighters and survivors all around. We got this.
Is there anything else you think would be important to include?
To those that need to hear it, you are not alone. Find your tribe of fighters, seek therapy if need be, and above all, take care of yourself and your body in any way you can. You’re worth it.
