This last year has been one of the hardest years of my life. However, I know it could have been way worse, and I am extremely lucky and grateful that despite all the complications, I am alive and healthy.

On October 1st I celebrated my one-year anniversary since my first of what would be 2 brain surgeries, to remove a tumor and control swelling and increased pressure inside my head. What many people may or may not choose to understand is why I for so long decided to not share with many people, or anyone really, what I was going through. For me, I acted much calmer than most probably would have thought I should, and I sort of shut down and just handled things as they happened. During the first major portion of my recovery, I found that I am truly not alone in what feels like the loneliest time of one’s life when suffering from some sort of trauma or major health issue. I also learned that many people choose not to share their story because they don’t want to seem like a burden, they don’t want to seem like they are seeking attention, and just want to keep some things private because once you share that information and knowledge, you can’t take it back. I learned that I don’t want to continue to hide what I am going through. I also decided that I wanted to use my voice to share my story with others to hopefully make someone feel less alone while facing their own health struggle whether it’s the same or different from what I’ve been through. What I can tell you, is that the emotions, the thoughts, the physical and mental strength it takes from you is all the same. So below is one of a series of posts that outline my discovery of the tumor, the various surgeries, and the rehabilitation and recovery period that I have gone through, and how my life and myself have changed since then.

How It All Started - “It wasn’t nothing, it was something”

After being diagnosed with PCOS (Polycystic Ovarian Syndrome) in June 2018, I had started to suffer some extreme pain in my throat and neck. Working with my endocrinologist and primary care, we decided to try to rule out all issues outside of my thyroid since all the obvious tests and imaging came back clear. The Licensed Nurse Practitioner that was on the day I had my appointment since my primary was out, recommended a CT scan to look at other vital parts of my neck and rule out any serious issues. That imaging lead to an MRI of my head. My primary felt that it was likely nothing, just some weird areas of denseness based on positioning in the CT scanner. However, an hour later she called to deliver the news that they had found a brain tumor, and that dense area on the CT “it wasn’t nothing, it was something”, words that have stuck with me to this day.

The days following that phone call were met with more MRI imaging and scheduling appointments to meet with a neurosurgeon. I had been referred to our local major hospital, and we had dived right into scheduling surgery after meeting with the surgeon. However, my parents felt it best I get a second opinion for something so major, and at an establishment that is a bit more known for their neurosurgery skills. We made the long trek to the next major facility, Massachusetts General Hospital in Boston, MA. I was apprehensive, especially doing surgery so far from home. And after the appointment and some time to think, it was quite clear that the game plan this doctor presented and the concerns he had compared to the other surgeon (not that he was not a good surgeon, just their line of thinking was vastly different), I was going to go to MGH for surgery. My neurosurgeon in Boston also encouraged a much quicker timeline to remove this tumor, as there were many uncertainties about the severity of my situation based on the imaging. I chose to give up the week I had planned to work at Fryeburg Fair (the one event of the year that I LIVE for) and go in for immediate surgery on October 1st.

The days leading up to that decision are quite vivid in my mind. My mom and I went to a pre-op appointment on Sept. 27th, a week after our consult, and I still hadn’t actually made the decision to do surgery as soon as Oct. 1st. But after meeting with the surgeon again, it was quite clear, he was dead serious about me doing this in 4 days. The next morning, I was at work for, maybe 2 hours, and spent much of the morning connecting with the Nurse Practitioner for the surgeon, trying to determine if they would be willing to forgo the MRI and Swallow Study prior to surgery. They wouldn’t, but they got me the last appointment available Sunday evening at their Waltham, MA location for the MRI, and the only hospital in Maine that does the Swallow Study (2.5 hours north in Belfast, ME), was willing to see me that day as soon as I could get there. I remember heading into a one on one with my supervisor and telling him I needed to leave because I was doing surgery Monday and had to get some studies done. We met my manager and then met with the director of sales to share the news, I threw up an out of office for my phone and email, slyly lied my way out the door since I hadn’t told any coworkers what was happening, and was escorted out of the building by my manager and supervisor. I drove 2.5 hours to Belfast, had the Swallow Study done, only to find out I sprained a muscle in my neck, likely from poor posture and lots of pressure on the muscles from sitting and using the phone, and then I drove 2.5 hours home to prepare for my Monday surgery.

I still went to the fairgrounds on Saturday morning and told my boss for the 4-H Horse Show that I wasn’t able to attend because I needed to go to Boston for surgery. I felt bad because he was diagnosed with bone cancer at the same time that I was diagnosed with my tumor and was undergoing chemo. However, the show day is long, and I needed to pack and get things squared away so I didn’t have to worry about them while recovering, and wanted to get on the road as soon as possible on Sunday. I made sure everyone was all set for the show, including my Draft Horse exhibitors and bosses. On Sunday, I packed and cleaned, and got myself ready. We then drove down to Boston mid-afternoon/early evening. We went to Waltham for my MRI, and then back into Boston to check into our hotel. It all happened pretty quickly honestly. My dad and his girlfriend drove up from New Jersey to meet us at the MRI that evening, and they would meet me at the hospital with my mom and stepdad the next morning.

The Surgeries, Recovery, and Setbacks…

The morning of surgery was a bit of blur. I got no sleep the night before. We were up at 4:30 AM and out the door by 5:00 AM. My check-in was at 5:30. The surgery length was expected to be anywhere from 6-10 hours. We checked in at the Wang Ambulatory Center, I was only allowed two guests with me beyond the waiting room, so I took both my mom and dad and left the other members of the family to wait for my parents. The prep for surgery was intense. They put you in a johnny and robe with stacks of warm blankets. Laying on the stretcher they set me up with IVs, and you meet with every person from your medical team. Anesthesiology, all the residents, nurses, etc. Then another doctor from Neurology comes in and measures your head and marks off spots where they will place neurons to measure brain activity during the surgery. Then they scrub your scalp, apply an adhesive glue, stick on a neuron, and blow dry it to your scalp (that stuff doesn’t come out easily FYI). Once sedated, they told me that I would have little needles placed in my face that are connected to a neuro-stimulator that will detect what nerves the tumor is attached to if it is in fact on the brainstem (it was, unfortunately, and they had to leave 10% behind to avoid facial paralysis). They also let me know that they would be hooking me up to an A-Line to measure my blood pressure, but the needle is large and painful, and they insert that when you’re sedated. It was a whirlwind of a morning and the 2 hours of pre-op quickly passed.

When it was finally time to head to the OR, it was all becoming so real. I said bye to my mom and dad, and they were left at a door once I was wheeled out towards the Lunder Surgical Floor. I’ve been wheeled into OR’s before since I have had two hand surgeries (so minor compared to this), but being wheeled into this OR was way different. I vividly remember going in, seeing the large CT scanner off to the back of the OR, standing near the doorway was my surgeon and the resident surgeon reviewing my imaging on a computer, I also saw the contraption that my head would be situated into, while taking all this in I was suddenly flooded by a team of nurses. They came at me from all angles. They provided me with more warm blankets and they tucked me in tight to keep me secure. The anesthesiologist was there to walk me through sedation, and many more nurses were checking to see if I needed anything. Right as they told me they were going to give me some oxygen, which I know is when they sedate you, I began to sob. You could tell that every nurse felt terribly for me in there, and they did all they could to comfort me. It’s hard to write this part, without actually starting to cry, because that moment really traumatized me going forward. The reality sunk in that I was about to have my head cut open, and I didn’t know if I was going to make it out of this alive or be the same person I was going in when I came out. The anesthesiologist pulled the mask back and asked if I needed a minute, but I told her no and to go ahead with the process.

From the moment I woke up from surgery until probably well into early January, I don’t remember much of anything that happened to me. The days in the hospital following the first surgery are a complete blur. I was on heavy drugs and a morphine drip for 2 days. I mainly slept because of the pain and the exhaustion my body was experiencing. I was also extremely nauseous (I knew this was coming, but this was a level of nausea I had never dealt with before). I remember breathing in and out so hard to avoid throwing up when I came out of anesthesia, and I kept my eyes shut. I had double vision (also anticipated because of the area of the brain they disturbed), and my balance was non-existent (also expected). Many people came to visit me, but I only remember snippets of their visits. According to my family when I was awake I was pretty coherent, and still had a sense of humor, and was answering questions that others were asking my mom. I don’t remember much, if any of this, but I guess that’s to be expected.

When you’re in a recovery unit you are cared for 24/7. For something as intense as brain surgery, you get even more critical care. Being in ICU, the first hour after surgery, about every 15 minutes the resident surgeon came in to do a neuro exam on me. Then it goes to every half hour for a certain period of time, and then an hour, and so on. Every morning the resident surgeon along with other residents rounded the floor to come in and check on me, my incisions, and do their routine neuro exam (testing grip strength, eye movements, pupils, overall strength, facial movements, etc.) Since they were also measuring my intracranial pressure because of how high it was when they cut me open (so high the surgeon told my parents he was surprised I wasn’t in agonizing pain) I had a drain that came out of the left side of my head that constantly was being measured to see what the pressure was. The ICU Nurses consistently measure it several times throughout the day and notate any changes. I was stable all 5 days I was in ICU (which originally we only had anticipated on 1 day), and then they took it out.

I was finally able to start eating about 2-3 days post-op. Vanilla Ice Cream, Applesauce, canned peaches, and cinnamon raisin toast were the only things I could stomach and keep down. However, 4 days post-op when I was finally starting to eat fairly well, I had a setback and threw up everything from that morning. The first time I consciously remember vomiting (I apparently threw up when I woke up from anesthesia, but do not even remember it) after surgery. I remember sobbing and asking the nurse why this was happening when I was doing so much better. She said it happens frequently, but hopefully, it will be uphill from there. My ICU nurses deserve all the credit in the world for taking such great care of me. They were kind and caring, and they were very much on top of every little thing and change that was taking place throughout my recovery. I finally was able to shower later in the week, but I had to sit in a chair and my mom had to help me because I couldn’t stand and I was super fatigued. My left arm where the A-Line had been inserted was also bruised from my wrist to my elbow so it hurt to move it. My mom had to brush out all the hair that was matted up into a bun on top of my head and remove the glue from the neurons. They had unfortunately shaved most of my hair off, it was a sad sight considering my hair was down to my chest at this point in time. I had to use a walker to get around and had in-hospital physical therapy visits which were exhausting. I had never felt so much like a child or an elderly person in my life because I had no balance and couldn’t do a thing for myself. It was exhausting and difficult to walk around, I couldn’t do the stairs with confidence, I shuffled when I walked, and couldn’t wait to lay back in bed once I was up and moving. I thought I knew tired before, but this level of exhaustion was a rude awakening to just how not tired I was in my past.

After spending 8 days in the hospital, 5 days in ICU and 3 days in recovery, I was finally able to go home. 2 weeks after being home, I was starting physical therapy and made some pretty quick gains. The first week of November I had a follow-up with the surgeon and we had my staples taken out just a week prior. All 36 glorious staples holding together my 6 inch incision straight down the back of my head to the nape of my neck. I had bounced back pretty quickly after this first surgery and once I started PT. My surgeon was impressed with my progress and how far I had come, especially for someone who was only just under 6 weeks post-op. He had told me that day, that my surgery was the difference between life and death on that table and was extremely high risk. So to be progressing as well as I was is something that I should be proud of. I wasn’t in way, shape, or form, ready to return to work yet, but I was on the road to getting better and returning to a normal life. I was not using a walker anymore, I had started using a cane to get around, I was finally able to do stairs, and for the most part, my double vision was resolved minus some issues with my vision up close or using electronics was starting to be a bit halo like. He’d recommended I see my regular eye doctor, and if they were not comfortable with providing support, he’d get me to a Neuro-Ophthalmologist for a further work-up. But regardless, I was starting to feel good and I was on the road to resuming my normal life.

5 days following that appointment I became extremely sick. I personally thought I was just having a severe bout of Vertigo because I’ve had it my whole life, and every once in a while I get these flare-ups. We finally were called into MGH after a week of me taking my meds for vertigo but just not feeling or getting any better. My double vision was worse, I was lethargic, in agonizing pain anytime I moved my head, and I had no balance. I also had severe nausea again and everything I ate tasted like metal. When we arrived, we had a head CT and a clinical appointment. The NP I had been working with since Day 1 came into the exam room and told us that my ventricles in my brain were very enlarged and that I was going into emergency surgery to have the fluid drained and a ventricular-peritoneal shunt put in place to permanently help with this excess of fluid that my brain was building up. I don’t remember much from that week or that day. I remember being in the surgical prep room laying on the stretcher, my mom and my aunt were with me. The resident surgeon who worked on my first case came in, and I still had my wits and humor about me, because I laughed and said “I bet you didn’t expect to see me this soon!” he told me to take it easy moving forward. The nurses gave me something for anxiety prior to going into the OR, and then it was time to leave. I blacked out and don’t remember even the trip to the OR. That surgery was only about 1.5-2 hours long. I felt much better when they released the pressure. When I was finally cleared to go home the following day (Thanksgiving mind you), I was exhausted. However, 4 days later I ended up in the ER with pressure again, the valve setting was too high. We had to get a full workup to ensure nothing was blocked and then turned the shunt valve pressure down. I started at 15 and then went to 10. I was feeling better a few days later when I went home, but not great. We also saw that I was still filled with fluid so 10 wasn’t draining enough and we went to a 5. The next scan showed my ventricles were slit-like, almost non-existent, so we went up to 7, hopefully, a happy medium between 10 and 5. And that has been my number since early January, until recently where I suffered an acute case of hydrocephalus. We dropped my shunt back to 5 and came in 3 days later for another CT. My ventricles drained quite a bit and I was down to a normal size, but our fear was since it happened much quicker than anticipated would we be risking shunt collapse? So we decided to go up to 6 and then screen me again in a week when I was already back in Boston to meet with the Neuro-Ophthalmologist. The shunt has been something we’ve had to monitor closely over the last year and will be something I continue to monitor for the rest of my life.

Looking Back….and What Lies Ahead…

For me, this has been the hardest year. These extra complications and setbacks weren’t expected. There were things we did expect coming out of the first surgery, but the prolonged visual issues that require surgery to be corrected, the random bouts of hydrocephalus without a slow build-up of symptoms, nausea, the balance issues that are prolonged, were not really expected. The anticipation was that I would be back to normal activities and work within 3-4 months from the first surgery, and it will take a full year before I felt good and normal again. On October 1st I lapped the one year anniversary and I don’t feel like me at all. I had to take 6 months off of work, and when I came back, I had to be on an ADA accommodation to work from home, and I had to have a reduced schedule when I first started out. I haven’t been able to drive a car since last year, and for the first 3-4 months after surgery, I couldn’t do anything on my own. We take for granted in this life a lot of the simple things that we have the ability to do. I’ll never take for granted the fact that for the most part, I am an independent human. My brother is visually impaired for life and cannot drive a car, so he is always relying on others to get him to the grocery store, help him read labels, etc. I cannot take myself to the store, and I am exhausted when I am done. I am so much more appreciative of the things I am able to do, and the things that people have done for me.

I still have another surgery to get through. In March we saw a consultative Neuro-Ophthalmologist at Massachusetts Eye & Ear, and then finally after 5 months, got referred to the eye surgeon for the center as it appears surgery is the only way to correct my vision since it has not resolved on its own. I have what they call a Bilateral Cranial Nerve 4 Palsy, since this nerve is paralyzed it can no longer control my eye muscle movements to look inward and downward. We also found out that on top of this palsy, there is a misalignment of my eyes, and due to the weakness, both of my eyes muscles are twisted at a 27 degree angle and have to be untwisted and permanently detached and reattached to my eye. So while this surgery is typically short and doesn’t require an overnight in the hospital, it is complex and difficult at best and may require multiple surgeries to try to correct the issue in stages. Although any continued issues with the shunt should be few and far between, as my body changes, and the amount of cerebral spinal fluid it creates changes, my body’s absorption rate will change, causing us to potentially have to change the valve pressure throughout my lifetime. I am lucky because I have one of the newer VP Shunts on the market, and it is not affected by MRI machines (since I have to have those at least 2x a year after I lap the first year), and can be changed with a magnet that is placed over the top of the valve which lies just below my skin’s surface. So for each adjustment, it’s simple and doesn’t require multiple surgeries. So while 2019 may not have been my comeback year, 2020 certainly ought to be, and that’s the hope from my medical team. I am blessed to have such a caring and supportive medical team as well. The spectrum of providers I now have is wide and vast; two Neurosurgeons, Nurse Practitioner for Neurosurgery, Neuro-Oncologist, and a Neuro-Ophthalmologist. I’m also being referred out to a Vestibular Specialist to better diagnose and treat my underlying dizziness and balance issues.

Over the last year, people have told me how strong of a person I am, that I am a warrior and a fighter for everything that I have been through and that I keep facing. It is comforting to hear that, and I know that I am tough for all that I have been through. It may not have been the worst-case scenario, but it certainly wasn’t the best or easiest scenario to be in. However, I am LUCKY, and this could have been SO much worse. I could have had cancer, but the tumor was benign. I could have had lots of different paralyses if there was any damage to any of the other nerves or the brainstem (my eyes are minor and they can, for the most part, be corrected through surgery and other aids, I have a chance to be able to see singularly again) potentially causing more severe issues. When I look at my journey, yes it’s been hard, but I survived, and for the most part, I am healthy. I see kids and adults in much graver situations than mine, or who don’t have the same luck that I did when I left that hospital. Some are told they had a cancerous tumor, some have to undergo far worse and more intensive surgeries and treatments, or some may not be able to be cured at all. If there is one thing that I have gained from this journey, it’s perspective and gratitude. I have a whole new perspective on my life, what I want out of it, and it really gave me a wake-up call and to realize what fuels me. I also have so much gratitude for people with limited independence and who suffer from some of the impairments permanently.

My hope for sharing this post and my story is to give each of you the new perspective I have gained and to know to not take this life for granted because it’s not always guaranteed. Live your life to its absolute fullest, do what makes you happy, and follow your passions. You’ll regret it if you don’t, or you’ll regret it if you end up in a situation where you are no longer going to have that opportunity that you once had to chase your dreams. On a more serious medical note - it’s really important that you take the time to do your research on the medical team you are choosing, especially for something as major as brain surgery. The two separate consult appointments I had with both my local hospital and MGH were very different. It was quite clear that they also had very different perspectives on the severity of the situation, and their views on the imaging were also different. It’s good to get a second opinion and to listen to everything that each hospital and the surgeon has to offer. Making the decision to go to MGH wasn’t easy in the sense that I didn’t want to be so far away from home, but it was EASY in that, I knew that I had the best fighting chance to live a normal life with very few impairments coming out of this. However, if there were to be impairments, I was also in the best possible place to receive care and treatment to deal with these issues.

I also want people to know they are not alone. Health issues are scary, and never in a million years would I have thought that I was going to have a brain tumor and need two brain surgeries and that I would be suffering from additional complications and impairments at such a young age. But..IT HAPPENS. And it happens to infants and innocent toddlers who haven’t even been able to experience all that life has to offer. It happens to young adults and teenagers, and it happens to the middle-aged folk and the elderly. These health issues, they do not discriminate, they do not care if you had big plans and were thriving in your career. They do not care that your family must rearrange their life to support you because you cannot support yourself. Lean on your family, lean on your friends, and lean on your medical team. Put yourself first and foremost and your health first and foremost above all else. I learned that work will always be there when you return, whenever you return, but you may not always be here if you don’t take care of the issues you are dealing with. Also, know that you aren’t alone in the battles you are facing. Social Media is a great reminder that we aren’t alone, and is a great wake-up call for when you need to be snapped back to reality when your situation isn’t as bad as it could be. I never saw more stories about children, teens, and other adults dealing with far more difficult health struggles, than when I was recovering from brain surgery. The stories always would pop up on my news feed when I was at my lowest too, mentally. And it was a great way to remind of where I am how, how far I’ve come, and to be grateful for what I have. These stories were inspiring to say the least. Also, follow your instincts when you aren’t feeling well and something isn’t right. Had I not continued to find a solution to my neck pain, we would have never discovered the tumor that was a ticking time bomb in my body. I also never followed any of the regular signs and symptoms of a tumor, or hydrocephalus, so know your body and work with your medical team to ensure that nothing goes undetected or missed.

For those of you have stuck through and read this post (it was a bit long, I know..) thank you. I hope that you were able to take something away from my story, whether it was a new perspective, whether it was a reminder that it’s OK to get more than one opinion on your health issues, or whether it was just comfort in knowing that if you are struggling with a health issue too, that you are not alone. Questions? Have your own story or advice to share? Drop a comment below!