Welcome back to the My Story Blog Series! If you haven’t read Episode One: An Overview or Episode Two: My Life Changing Decision, you might what to check those out first!
Today I’m telling the tale of how I was diagnosed with a brain tumor in March of 2017. This came at the peak of the worst I’ve ever felt – both physically and mentally – in my life. I know so many people out there have either received a life-altering diagnosis of some sort in regards to their own health or the health of a love one, so I hope many of you can relate to my experience. Here we go!
How it began…
I remember clearly the very first moment I experienced my first major symptom. It was Mother’s Day of 2014. I had just gotten home after a long weekend at a dance competition, (I owned my own studio at the time.) I sat down on the couch, stretched out my arms and felt a really strange tingle run through the right side of my body. It felt like my arm was suddenly asleep. It wasn’t painful, just sort of bizarrely uncomfortable. My immediate thought was, “I’d been carrying around a bag that was much too heavy all weekend, but that it probably wasn’t anything to worry about.”
A couple weeks later, I still had this weird numbness/tingle in my right arm so I headed to my PCP. She agreed that it could likely be a pinched nerve in my shoulder or neck from a heavy bag and suggested I visit with their in-house chiropractor.
I’d never really needed chiropractic work, even through all my years of dance, so I was a little skeptical but was willing to let them take a look. He took and x-ray of my neck area but didn’t see anything that seemed too concerning and went to work trying to adjust me. I had started developing a lot of pain and discomfort in my right rib cage. He thought I might have a rib out of place and tried twice to pop it back in. After weeks of treatments with no tangible results, I decided to take a break from going in and figured things would eventually work themselves out.
Off and on over the next few years, these types of issues would flare up and then subside. There was a period of time where I couldn’t raise my arm above my head, (super annoying when you are a dance instructor,) and times when I had no issues whatsoever. I wasn’t ever able to associate anything I was doing or experiencing in my life with these strange issues in my body…“Maybe this is just what getting older looks like…?“
In Episode Two, I explain how in early 2017 I realized that my life had gone so far off the path of what I desired and I knew I needed to make a HUGE change in order to turn it all around. I had come to terms with the fact that this meant selling my business. This was incredibly stressful. I was trying to continue operating as if things were good and well, while behind the scenes I was working on a massive uprooting of my life. Coincidentally, all of my health issues were getting worse and worse.
My right hand was becoming a total wreak, I had lost tons of dexterity and was constantly dropping things and having difficulty writing and typing. The whole right side of my body felt weak. I fell down some stairs at my home one evening but wrote it off to having one too many glasses of wine. Then I took a really hard fall while skiing. My legs felt like they literally just stopped working in the middle of the run. I thought, “yeah, you are just fat and out of shape, no surprise…” but part of me knew it was more than that.
I started doing some online research, as we all love to do, and became absolutely convinced I had MS (Multiple Sclerosis.) My uncle had passed away a few years prior due to MS and all of my symptoms seemed to line up. This felt absolutely terrifying. I’d been reading Amy Schumer’s book at the time where she talks about her Dad and his MS. It seemed like it was popping up everywhere and I knew that HAD to be it. I was doomed, my life was going to be miserable – I was panicking and made an appointment to be seen at an MS clinic.
Before my appointment came around, I was attending yet another dance competition. Dan was out of town for the weekend – probably went skiing – so I was home alone. I woke up early Saturday morning to drive to the competition and I couldn’t see properly. “Are my contacts messed up?” It’s like everything was kind of blurry and out of focus. But what could I do? I had work to do – it was my job to be at this competition all weekend long with my students. So I went. Bad choice, in hind-sight, but I did it. Throughout the weekend I kept feeling worse and worse. I couldn’t even recognize anyone unless their face was directly in front of me. Everything off to the side was out of whack. My body felt incredibly weak and I was totally off balance. Basically, it felt like I was super-duper drunk and having the spins…but I wasn’t.
I couldn’t see my phone clearly to read emails or text messages. My hands and fingers were basically useless. I started having difficulty hearing and had a ringing in my left ear that wouldn’t stop. I felt like I was struggling to come up with the right word on occasion. “What the fuck is happening??!?!!?!“
I quietly and discretely made it through the weekend and immediately went to see my PCP on Monday. My husband drove me, (much safer,) and I explained everything that had been happening. I reminded them of how this all started with what we thought was the pinched nerve and how I’d had these off-and-on issues ever since then. My PCP told me I probably had Positional Vertigo…um, are you kidding? I told her I thought I had MS and that I’d made an appointment to be seen by a specialist but it wasn’t for a couple more weeks. She told me I probably had Positional Vertigo and it would be fine….um, are you kidding? This was something serious, I knew it it. Finally she said she’d write a referral so I could go to an imaging place and have an MRI. This process would take days if not more like a week.
Freaking out, I reached out to one of my best friends who happens to be a doctor and explained the situation. She advised that I get up early as possible the next day and go to the ER and request an MRI immediately while all of these symptoms were still present. Waiting around and getting the scan after any of these symptoms lessened or disappeared would be useless. So that’s exactly what I did.
Literally within 2 minutes of coming back from the MRI, the Doctor came in and said, “we know exactly what is wrong, and it isn’t MS, it’s a brain tumor.” My immediate feeling surprised me and it might surprise you. I didn’t burst into tears, I didn’t get angry or upset, I felt relief. Relief that 1) I didn’t have MS like I thought, and 2) They knew right away what was wrong with me and I wouldn’t be trapped in some dramatic and lengthy mystery diagnosis situation. I just had a brain tumor. I still don’t know why that was my initial reaction, but it was – pure relief.
Of course that was followed by a million questions as to whether I had cancer or was going to die in a month and all the things, to which the answer was no, you are likely going to be just fine. Again, relief.
My type of brain tumor is called a Cavernoma or Cavernous Malformation. It is basically a collection of tiny blood vessels in the brain that cluster together and create a mass – this is what they can see on the MRI. These vessels slowly leak out tiny amounts of blood into the surrounding area. Sometimes, when it bleeds a bit more and the body can’t absorb the “blood trash” that is generated at a fast enough pace, the various symptoms are amplified and new ones present.
Many people go their whole lives without even knowing they have these Cavernomas. They can be in areas of the brain that are kind of non-essential and don’t cause any problems. Mine however, happens to be right on my brain stem where there’s a lot going on. It’s also why doctors do not want to perform surgery to extract this mass unless I have some much more debilitating health issues arise. It is possible I could wake up tomorrow and not be able to walk or swallow…then they’d consider surgery. However, it’s likely they’d mess me up more initially and that’s why it’s not really advised. So for now, I continue to live with this little guy in my brain.
Of course I wanted to know what things I should/shouldn’t be doing in order to keep my symptoms at bay as much as possible. “Do I need to become Vegan? Should I stop drinking alcohol? Do I need to live a sea level? What do I need to do?!?!” The doctor’s answer was basically, “Nothing. Nothing is shown to make things better or worse. There are no correlations that have been medically proven, so just keep living your life as you want.“
At this moment, I felt relief again. I was relived that apparently nothing I’d done had caused this, and also that he wasn’t going to tell me I needed to cut out cheese and wine or something, lol. But it also felt frustrating, like, just tell me to do or not do something, anything, and I’ll do it in order to feel better! But there wasn’t anything that could be done.
Likewise, there is absolutely no predictability for how this condition will progress, when I might experience a flare-up, or what symptoms will be expressed. Like I said, I could literally wake up tomorrow unable to walk. Or I could wake up and be totally fine. It could go either way, and there’s no telling what it’s going to be. This felt very scary and out of my control, which did not feel great.
So, they sent me home with a course of steroids to see if it would speed up the healing and help with inflammation, which it did not. I saw a Neuro-Optical Specialist who confirmed I was having double vision caused by my left eye not being able to move properly and track with the right. I did several weeks of physical therapy and occupational therapy to try and regain some vision clarity, balance and dexterity. But essentially, I just had to wait. My body just needed time to absorb the “blood trash” and get back to “normal”. It took about 4 months before the majority of my symptoms dissipated completely.
During most of this period, I couldn’t drive which was the most inconvenient issue. The studio I owned was about a 30min. drive and someone had to take me there and pick me up every time I was scheduled to teach. I initially took a couple weeks off altogether and then I got some other instructors to cover some of my days so that I could take it easy. Doing the business logistic work on the computer took a million times longer because I couldn’t see or type very well. I had to ask my clients for grace in extending things like getting their monthly bills to them. Seems ridiculous, but it felt so defeating and lame to not be able to do your job the way you do normally. I’m a big perfectionist, I take pride in doing things well, and I don’t like to ask for help, so this was a real struggle for me.
How I’ve been since
Since 2017 when I had this huge explosion of issues and was diagnosed, I actually haven’t had many continuing issues. I had small flare up to the point where my vision went out a bit in 2018 and took several months to clear up, but nothing to the extreme of 2017. On a daily basis I just deal with a low level of discomfort on my right side and that slight loss of dexterity in the right hand. I get massages about every 2-3 weeks to help make the right side feel more balanced and normal. There are some weeks where I can feel some of the “weirdness” creep into my right leg, my ribs and back become more painful, or my right arm becomes more numb, but for the most part it dissipates fairly quickly. I’ve had several scans and they always come back looking the same each time.
Even though the Doctors have assured me that “nothing has an affect on my Cavernoma,” I can see, and most people who know my story will agree, that the immense amount of stress, anxiety and unhappiness I was going through at that time probably had something to do with this huge flare-up. Now, 2.5 years after selling my business and completely redirecting my life to a place that I love, my brain has been at bay. Could be totally unrelated, you can choose to believe what you want, but all I know for certain is that was the most terrible time in my life in general and it was also the most terrible my health has ever been.
If you have ever had a major health scare or received a health diagnosis that is life-long or life-altering, I feel you. I know the thoughts and emotions that can come up. For me, having thoughts about my situation that created feelings of relief as opposed to devastation really eased me though this process. I didn’t even know about mindset work at the time of my diagnosis, (I wish I had,) but unknowingly I coached my way through this really scary time without totally losing my shit – #impressed. If you are dealing with something similar, I’d love for you to request a free consult call where we can chat about you and your journey!
[…] check out the other blogs here to catch up:Episode One: OverviewEpisode Two: Life Changing DecisionEpisode Three: Brian Tumor DiagnosisEpisode Four: Redefining […]
[…] out the other blogs here to catch up: Episode One: Overview Episode Two: Life Changing Decision Episode Three: Brian Tumor Diagnosis Episode Four: Redefining ‘ME’ Episode Five: Finding Love […]