2nd Anniversary - Brain Tumor Surgery

It’s hard to believe that two years has passed since I had brain surgery, it’s also still really hard for me to wrap my head around those words, “brain surgery”. A lot has happened, both good and bad in the two years since my initial diagnosis and surgery, and most especially in this last year. Today I take a look back on everything that’s happened over the last two years, share some reflections on what’s happened, and where I am now.

The last two years since I had my initial brain surgery have certainly taken me down a winding road. for those of you that are unfamiliar with my journey, I was diagnosed with a fourth ventricle brain tumor in august of 2018 and had surgery to remove it in october 2018. 7 weeks following that i had emergency surgery to reduce increased pressure and swelling in my head and place a vp shunt to permanently monitor my intracranial pressures. That came with it’s own challenges as we navigated a difficult course to get the right pressure setting for my sensitive body, and caused visual complications that had to be surgically corrected in october 2019. just as we thought things were on the straight and narrow, i relapsed at the end of january 2020 and we discovered my shunt had failed. 5 days later, we had a confirmed bacterial infection and second shunt failure that landed me a 2 week stay in the hospital. Since that relapse, i was able to recover and go back to work, along with getting a confirmed diagnosis of partial loss of function of my left inner ear which has been contributing to my ongoing balance and dizziness problems, and was seen by a neuro-psychologist to address some cognitive functioning challenges i noticed after the recent relapse. Like I said, it’ s been a bit of a winding road and a rocky couple of years, but my medical team and I persisted through it all, and nevertheless i am here.

A Look Back at Year 1

The first year since my surgery was hard. I was completely dependent on my family in order to get around and do things for the most part. I spent the better part half of a year with impaired mobility requiring either a walker, cane, or wheelchair to get me around. i had extreme nausea that caused me to lose 30 pounds over 5-6 months because i had a terrible metallic taste in my mouth from my medications, and the thought of food due to the nausea was repulsive. i was also visually impaired, which contributed to my lack of mobility and some balance and dizziness problems. i had severe double vision and wore an eye patch over my glasses in order to try and give myself some level of singular vision and relief from the symptoms the double vision caused. when i was finally given the clearance to return to some sort of normalcy in my life by going back to work in the early spring of 2019 at a part-time and then full-time capacity, with the ability to work from home, I was thrilled. I wanted to go back to work 6 weeks after I had the first surgery and my surgeon quickly informed me I was going to need several more weeks at a minimum to recover, but I will eventually get there. Of course several weeks turned into several months with the emergency shunt surgery just a couple of weeks after that visit, so I was very eager once the time came.

going back to work came with its own set of challenges. i had been out for 6 months in a company and industry that moves fast so there was a lot to catch up on. we had released a new test, new products and services, we had other updates that i needed to familiarize myself with, and so on. i spent the first few days catching up on emails and with my field sales team that i supported. my first trip going into the office was for a team meeting and training and i also met with our sales trainer to get a refresher course on some of our core products and services, it was overwhelming to say the least, but met with a lot of support by everyone. it took a bit for me to get back into the swing of things but once i did i was full steam ahead….which didn’t work in my favor in the end. rather than ramping up my productivity i came out like a raging bull and once my first full quarter back ended, i was never able to match pace again and quickly burned myself out. i wasn’t prepared for the mental and physical stamina it was going to take for me to do the job that i once was able to do with much more ease.

by the time summer rolled around my mobility was much better after consistent physical therapy. i was also in a better headspace mentally having gone back to work and not being cooped up at home with nothing to do, but was still not in a great headspace and was feeling isolated without the ability to connect with many friends or go see my family who lived further away. summer is also the start of the agricultural fair season, so my stepdad ensured that i wouldn’t spend my weekends at home alone and in the house, and we spent as many weekends out at the local fairs as we possibly could. During the summer I also met with my Neuro-Ophthalmologist and strabismus surgeon who would give me a better idea of what it would take to correct my double vision and booked surgery for early fall, giving me hope of returning to a normal life.

By the time Fall arrived it was time for the fryeburg fair. for the most part, i had remained extremely quiet about what had happened to me over the last year, outside of telling a few close friends, some work colleagues, and some of my immediate family. on this day, 1 year ago and on the first anniversary of my brain surgery, i decided to share a post from the fair with a large social media audience and also acknowledge what had happened. it also gave way for me to launch this blog and create a platform to share my journey. i was excited to be able to join the fair this year since i had to forgo taking part in 2018 to have surgery (something i was not excited about doing, but it was in my best interest). I live for the fair every year and i enjoyed it as best i could (eye patch, grandma shades, and all!), and I got a lot of help getting around from many of my fair family and friends, and had plenty of support in running my 4-h horse show. once the fair was over the two weeks leading up to my double eye surgery flew by, and a miracle occurred where i could finally see single and straight again. the progress of my vision only got better over the following months as things healed, and my surgeon was thrilled with the results, as was i. this gave me my confidence back as a person, allowed me to drive again, gave me my independence back, and meant i could return to work in the office at the start of the new year, something i couldn’t wait to do.

A Look Back at Year 2

Year 2 was supposed to be “my year” so i was told. i had the strabismus surgery that corrected my vision and i finally seemed to be in a good place with my health. I had my routine 6 month MRi within the first week of the New year, just after i started work back at the office, and I had a happy, healthy, stable MRi and was actually feeling the best i had with regards to my symptoms in quite some time. my neuro-oncologist was thrilled and so was my nurse practitioner. however, just a short 3 weeks after seeing them i was coming back from a weekend conference when i just wasn’t feeling right. i chalked it up to vertigo and sleeping too flat at the hotel, but by the monday morning it was worse, and by the time i made it to the office i knew something was wrong. this lead to a phone call to my neuro team and a trip to boston. i was quickly admitted to the emergency department after a CT Scan and a clinic visit proved problematic, and that started the whirlwind that was shunt replacements 2 and 3. at the time since i was back in the office and looking to advance my career, i was interviewing for an internal position in a department i had been wanting to move into for a while. However, thanks to this major setback I had to bow out of the hiring process. it was a huge disappointment for me and a setback to my career advancement and left me feeling like i was never going to be able to advance myself. of course all thoughts someone has when dealing with trauma that is a major unexpected life interruption. i ended up on leave for a few months following this setback before finally returning back to work.

coming back to work this time around was a lot harder. my body had already been through quite a bit and i was already struggling with a lot of mental fatigue since my return the year prior, and another back to back set of brain injuries so soon after i recovered from the first two major brain injuries was a shock to my system. i was also still struggling with dizziness and balance, so after having to cancel the initial consult due to surgery, we finally got me in to the vestibular specialist and received a true diagnosis and treatment plan. unfortunately, along with having prior issues with vertigo and motion sickness, and brain surgery, i also had lost partial function to my left inner ear. This resulted in receiving a prescription of 9-12 months of vestibular therapy to retrain my body to use my right inner ear for all my balance. to add to the list, since the last brain injury i noticed that i was struggling cognitively in my day to day life and in my job more severely than i had before. at my next 6 month MRI and appointment with my neuro-oncologist we addressed the concern and agreed to get me the neuro-psych evaluation to measure and test my cognitive functioning and to create a baseline moving forward.

closing in on the end of year 2, it definitely wasn’t my year - most people would comfort me and say it wasn’t anyone’s year with covid-19. however, this was supposed to be the year that i was going to make a comeback after all the challenges i faced after the first brain surgery, that weren’t supposed to happen. although i had many setbacks, i also gained a lot of answers medically. we got a lot of issues addressed that were persistent problems before and we quickly tackled new issues that came up. my hope is that year 3 will be significantly better and that i am finally on the upswing of all the medical mayhem that i have been through.

Reflections

If there is one thing that i have done over the last two years is that i have done a lot of reflecting. i have taken a lot of time to really figure out what it is in this life that i want, where i want to take my career, what i want to do next, and so on. when you are put in a situation where your life as you know it has been altered, and you are forced into a position where you have the time to sit and think, you figure out what’s important to you, who’s important to you, but most importantly who you are important to.

one of the hardest challenges that i have faced and still sometimes struggle to come to terms with, is the mental trauma and depression someone goes through when dealing with a huge medical illness and social isolation. i’ve been dealing with this for the last 2 years, and sometimes i feel like i’m on a merry-go-round that i can’t get off of. it’s like once it starts to slow down and you think you’re going to be good something happens and it picks back up again, or in this case, something goes wrong and i relapse again. a lot of people also have a hard time grasping what it is that you are going through, struggling with, coping with, etc. many want to understand, they want to empathize and comfort you, but it’s often also a really large burden when it’s something that you are constantly dealing with, and not something people want to hear about all the time. it’s a depressing story and it’s draining, but it’s also my whole life currently.

going through a medical illness like i have can also be one of the lonliest things someone can go through as well. your body goes through many physical changes beyond just the mental and emotional changes. i had my head shaved and cut open, and titanium replacing what should be bone, causing prolonged head tenderness and sensitivities. i also went from having long, luscious hair, to needing a pixie cut once it started to grow out from where they shaved me to cut me open. as a woman your hair can sometimes be the thing that makes you feel most beautiful, but having to go through the many stages of hair regrowth and transformation it can be a struggle for some to still feel that way. although this might seem superficial, this was the case for me. i loved my hair it’s what made me feel most beautiful and it was now all gone. along with the changes to my physical appearance, in my first year, I was hardly able to walk, unable to see straight, and not working for the better half of it, i didn’t feel like there was a light at the end of the tunnel, especially with the constant setbacks. i would never have said it then, but would say it now, that i definitely struggled with some level of depression in 2019, and rightfully so. i didn’t work for a good portion of the year and the latter half of 2018, i just had two major brain surgeries, and was struggling to recover. what we thought would only be a 3-4 month leave of absence turned into 6 months. what should have been about a year before i felt “normal” took more like a year and a half, and then i had another setback. i think anyone who continues to get knocked down that many times would at some point deal with some type of depression.

i was also isolated from the outside world not just physically, but emotionally for a long time, because i didn’t want to tell anyone what was going on with me, because it was so big and it was traumatic. Bottling that all up and then being physically removed from everyone only added to the depression. while i was out recovering i did have a few visitors (bless their souls) and would facetime or have phone calls with my family, but for the most part it was just me, my mom, and my stepdad, and when they were working i spent the day on my own. being socially isolated for such a long period of time, even when i returned to work because i was working from home, made it difficult to maintain some of those work relationships and friendships that i had. i wasn’t able to go to a lot of group outings, i wasn’t able to go visit with anyone, so it was hard. i only saw people when i came in for a meeting because i got a ride from my parents or when i was brought in to a meeting via video chat. when i had the second relapse and covid-19 hit, it really added to that social isolation. now, not only was i at home recovering again, but now we were all at home, and since i was immunocompromised from my infection and treatment, i needed to protect myself and really remain distanced, especially since i was continuing to have appointments and see specialists and couldn’t risk getting sick.

the cognitive struggles i began to face during this last recovery were something that really affected me in such a way that is really hard to describe. although they were minor, they were enough to frustrate me and cause me stress and anxiety to a new level that i had never dealt with before. They were making my job harder at work and causing me more fatigue which was spilling over into my personal life. i noticed that the cognitive changes were affecting me as a whole person, from my emotions to my physical capabilities, and everything in between. when i made the decision with my neuro-oncologist to get testing done, it was essentially like admitting or coming to terms with the fact that there was something wrong or that i was not the same person that i was before. i think when you have gone through a lot of trauma it does change you as a person. i think this has changed me for the better, but i think i have some scarring from the trauma i have faced. The Neuro-Psych Evaluation was one of the hardest things I had to do, mentally and emotionally. I hated having to share what I was struggling with and admitting it out loud. I also felt crazy, but was assured that I was not, especially when my testing revealed some deficiencies.

i think as a young adult it is hard to say that you are not the same person that you were before your brain injury. i struggle with admitting that and coming to terms with it. i want to be who i was before my brain injury. i want to be that person so badly it hurts, but i know that it will likely not happen, or might take years to get somewhere even in that realm again. it’s not to say i cannot do the things i did before, or do them as well, i just do them differently, or i take a little longer to do them now. I am a different version of the me before brain surgery and before my brain injuries. unfortunately this change has caused a lot of stress and anxiety and contributed to any residual depression i may have had from my situation in 2019. there are days where i am so distraught with where i am at sometimes that i just want to cry, or so frustrated with how long it’s taking me to do something. there are days where i am so exhausted i really would rather sleep all day than get out of bed. often times i have days where i don’t have enough brain power to edit and put together my blog posts for my blog, and this is something i love to do, but it takes a lot of energy, and i have to devote a lot of energy to a lot of different things, and learning to balance and juggle that has been hard.

i am learning to cope with the changes though, i am learning to cope with my stress and anxiety and with the mental fatigue using the tools, resources, and support i have around me. i am learning that self-care needs to be a priority but it only can be if you make it one and be active about it. i am learning that when i need to take time to pause i need to take time to pause or hit that reset button. i tend to drive with my foot on the gas and never let up, and that always backfires on me, but that’s my nature. i am learning that when you have a brain injury (or 2, or 3, or 4…) that what you did before may not be what you do now. i have to accommodate my brain and my body and make adjustments in ways that i have never had to before, being the energizer bunny isn’t an option anymore.

Looking Ahead - Year 3 and Beyond

My hope, and i know it’s the hope of my whole medical team is that this will actually be my year. that i will make it the whole year without being in the emergency department, without a clinical visit that requires a shunt adjustment, without landing in the o.r. because my shunt is in failure, or any other medical problem. over the next year i’ll continue with physical therapy to continue to build on my strength and balance, and focus on my vestibular rehabilitation as well. i will have my next 6 month mri in december and should hopefully not be in boston until 6 months after that for the next check-up.

since these last couple of years gives you time to reflect on your life, as i mentioned before, and what you want out of it, it’s given me a chance to plan how i want to navigate my career and move forward with goals once things calm down with the pandemic and we resume some level of normalcy. i also plan to continue to pour my heart and soul into the things i love, including providing more content for those who read this blog. it’s been a creative outlet for me and a way to share my story with you and be as real as i can. towards the end of this year i will finally be working on putting out my podcast for everyone and i couldn’t be more excited for that next chapter.

i have also taken the time to take stock in my health. between the pandemic and the setbacks, now that i am able to move forward i want to take back my overall health - mental health, emotional health, and physical health. i think it’s a really important piece to my recovery that i failed to acknowledge before, while navigating many other obstacles in my way, and i need to put more emphasis on that now. so i have started taking the necessary steps to improve all three areas so that i can be the best version of myself that i can be moving forward. overall, i am working on me and ensuring i am the healthiest and happiest version of me.

year 3 is going to be my comeback year…