The Road with No Shortcuts
Now that we're closing in on 2017, I've been doing a lot of reflecting. Also today, being my 6 month craniotomy, brain tumor removal anniversary. I've written some but I've realized I should probably write and document alittle bit more of my recovery for others to learn about or relate to. My challenges, success and setbacks.
I have found writing, instead of bottling it all up has been very therapeutic and it seems to also help others, which makes it that much better.
So here's a quick spark notes version of my "story." (half-ish way through my recovery journey in a blog post)
I am no hero, nor have I found a cure to save millions of lives. I live a pretty normal and fortunate life. I was just a 27 year old who had a little bit of bad luck being diagnosed the first of June (2017) with a brain tumor. June 26, later to have removed, Pathology came back and was labeled as pilocytic astrocytoma, which is typically a pediatric tumor meaning, I may have had it since adolescence. My tumor was benign on a scale of 1-4, 4 being most aggressive stage of cancer mine was a 1. There are many times I reflect on this and realize how fortunate I am, my story could have been very, very different.
I had been symptomatic for months possibly years leading up to the surgery I was just moving so quickly in this speedy world to stop and address how I was feeling. I was working 50-60 hours a week, volunteering weekly at an animal shelter, picking up freelance design gigs for extra $, raising a puppy on my own (Milo was the best recovery snuggle buddy) teaching fitness 2x a week and attempting to get my blog off the ground among keeping friendships alive and just living my day to day life. TALK ABOUT A WAKE UP CALL. This was not only saving my life but a huge teaching moment. I needed to slow down and put myself first for once. The honest truth, we cant please them all.
I spent almost a year in and out of the doctors and ER trying to figure out what was wrong. Every test showed I was the healthiest person in the room. But I was loosing feeling in my left arm, or having out of body experiences when walking. It was as if I had to think of how to walk and couldn't feel my legs at times. But that wasn't all, extreme fatigue and vertigo- the room would get wonky all the time, as if I was in a fun house. These dizzy spells would hit me at the absolute worse times, teaching fitness, presenting work or just out with friends. This is what kept bringing me back to the doctors. I was uncomfortable and couldn't figure out what was wrong but I knew this was NOT normal. Many many times the doctors sent me home saying it was side effects to medication (heartburn medicine) or anxiety... which at that point maybe it was. Imagine going a year with the room becoming a fun house, you'd get anxious too. Anyways, I was on a conference call when the biggest dizzy spell hit me. I was starting to panic inside, why is this happening what's wrong with me. I needed air or to lay down. I left work for home when others could tell I wasn't feeling well. I don't remember much of the walk home but grabbing everything I could to ground myself. I didn't know what was happening I called my PCP who told me to go to immediate care. I called my sister and boyfriend and said whoever can get to me first, I need help. My boyfriend made it to me first and we went to the immediate care who then directed us to the ER.
Hours at the ER, yet again all the test were coming back healthy. Finally, a doctor looked at me (he probably saved my life, for one listening to me and two, taking a chance on me) but he looked at me and goes you're uncomfortable, aren't you? I nodded, he asked me to list anything and everything that was bothering me even if it was a scratch. I listed a few things and by luck, I suppose I had been having shoulder muscle pain. With that he ordered a CT scan of my neck to make sure I wasn't having mini strokes. A mini stroke?!? I thought to myself, how?!? I'm 27 what's the future mean. Test came back negative. But there was something else, they saw, a shadow The scan for my neck picked up the shadow in my brain. At that point my parents were on their way and it was probably close to 4 am. They sent me back for a high contrast MRI. There was a mass, possibly a cyst in my cerebellum and was to see a neurosurgeon in 3-5 days after being released. By then it was 6am and a cyst seemed like something people treat daily and I thought nothing of it.
The next day I didn't go to work since I hadn't slept but went along living life as normal. Monday came around and I was directing a photoshoot when I called to schedule an appointment with a neurosurgeon. I called, for some reason still not realizing the severity. Pure luck, I was scheduled to see a surgeon the next day (little did I know he was one of the top surgeons in Chicago)
Tuesday, June 2, 2017.
I had my dad meet me at northwestern hospital for my visit. It hit me when I took the elevator up 22 flights and was redirected to the neurosurgeon side when I tried to check in at the neurologist. SURGEON, it hit me, that meant surgery.
My dad arrived and we were taken back to a room, (a room I one day pass out in when having my stitches taken out) They did a bunch of funny test to check my coordination. Touch your nose touch my finger, a test that would soon be difficult and an hourly check. Walk in a straight line, balance, etc.
The doctor came in, he looked way too young to be a surgeon. But his bedside manner was by far the best. He talked with me for alittle then was direct and honest with me. Calmly he said, You have a tumor in your cerebellum (you could tell he's had some practice delivering this news). My mind shut down and the room became silent in my head. I missed the next few minutes of him talking, I couldn't wrap it around my head. The silence broke, my eyes swelled up with tears, I bit the inside of my lip so hard, surprised I didn't break skin. Trying to hold back tears and stay strong. I fluttered my eyes dry and asked can I see the scans, I didn't believe him. How?! How could this happen to me, I eat clean, I workout, I do everything right to live a healthy life, so how could this be true?
Night and day. The MRI was night and day, big white circle like a full moon right there, couldn't have been clearier. He went over my options. Explaining what my next year or more would entail. What's next I asked?! Knowing my mind was made up he told me I was to sleep on the information I was given and book the OR Later in the week, knowing he could perform brain surgery to remove my tumor. He went through the procedure and explained it'll be far worse before it gets better, which he might have undersold that statement. It gets HELLA worse before it gets better and I'm still waiting for the true better.
We left, I sat in a chair in the main lobby as my dad made calls to my family. How do I tell people, how do I tell work? And million thoughts flooded my mind, as I was sitting there alone overwhelmed by information and fear. From a far noticed a familiar face, who gave me a nod but held back knowing I looked as if I wanted to be alone. But that familiar face was a distant friends who ended up knowing the surgeon I had just seen. And playing a key role in my decision. For he once was on the research team for my surgeon and his partner. He helped reassure me that I was in good hands with my surgeon who I thought looked way too young but to find had more experience than I had guessed and learned practiced with the best of the best when he was once a resident , which is how he ended up at northwestern. A top surgeon requested he came with him for his residency from a hospital in California.
I get a second opinion from a neurosurgeon in NYC. And book the OR just under 3 weeks later with my Chicago Northwestern surgeon, for June 26 2017. They would've taken me sooner but I needed time.
I tried, I really did. I tried crying but nothing really would come out. Sure my eyes would swell with tears now and then. It was usually when I walked to work it would hit me or when I was sitting at my desk staring at a computer screen. In those times the shadow of fear, doubt and death would find me.
For 3 weeks I surrounded myself around people, I didn't allow myself to be alone for any long length of time. One, I was nervous (of my health) if something would happen while I was alone and two, if I was around people I wouldn't cry, I didn't want to be scared and if I cried I felt like I should be scared. Many cried when I told them, hugs and I'm so so sorry. I became numb, I didn't have much emotion at all, part of me believes I was in denial for most of it or straight up didn't believe it. I still don't believe it to this day. I would just lift my chin up and reassure others it will be OK. Although at times I certainly felt like I was lying, saying it out loud helped. Staying positive helped.
Friends near and far reached out. Some I've never heard from again and others showed me what true friendship is. Leading up to surgery my old high school guidance counselor would pick me up and drive me all around Chicago just showing me where he grew up and fun facts about the city. He, a year prior had brain surgery himself and first hand knew what I was about to face. When he didn't hear from me every few days he'd call and check in or pick me up for Italian ice. Trying to keep me busy and optimistic, through it all I tried to stay as positive as possible. I've got this, I can do it. Big inhale big exhale. I became my own life coach, cheerleader and support system.
The day before surgery my old guidance counselor picked me up at 7 am took me to Bahia temple a place of worship and welcomes all beliefs. There was silence and I prayed. Give me strength, give me hope.
June 26, 2017. The day of surgery I arrived at 5 am with my parents for my high contrast MRI and testing prior to surgery. I didn't want to face or see anyone that morning. I left them all the night before with happy faces, the thought of seeing them before made me feel as if it were good bye.
The morning went quick, they didn't have me wait around long at all. Hospital gown on, one of 5 IVs in. Then reality of it all started sinking in. I had tags on my wrists for my blood type in case of an emergency. Signing please resuscitate papers, organs can be donated if something happens, etc.
Its becoming real, brain surgery. The risk. A lot of risk, they told me chances of me walking on my own for months were slim and when I woke up I would need assistance and eventually a walker or cane. A tremor I could produce in my hand unseen to the untrained eye. Coordination, will be challenged and relearned as for many other things I would have to relearn to do.
Each person assisting came in to introduce themselves, senior surgical resident, nurses, surgeon and my team of 2 anesthesiologists.
He probably has no idea how he affected my life but my anesthesiologist, one day I must thank him. He asked if I wanted to be "knocked out" before they took me back to the OR, most people do he said but I said I wanted to see the OR (I regret that now) as they wheeled me out of the room barley able to say bye to my parents. My siblings, boyfriend and his mom came running down the hall as I was being taken away.
The OR, everything and more than I imagined. Its not like the movies. However, there was a scary contraption for my head to be stabilized in, metal with pins. The fear was sitting in- I was cracking jokes and laughing nervously. Met my lead nurse who said she's braid my hair back around where they would shave, to keep the area Leann. They were all moving at a professional pace. My anesthesiologist talked to me again, preparing me for surgery. I think he could tell fear was all I had in my eyes. He put his hand on my arm and said "I promise you, you're going to be ok" and that's the last I remember.
The week in the ICU was a blur, I remember bits and pieces. I remember them asking me my name, date, president etc. touch my nose touch their finger; hourly. I remember the nurses who got me through the week. I remember when the nurse hit the toilet and it cracked off the wall and the toilet was replaced completely in 20min. I remember when my body when into shock and beeping of the machine went off. I remember the panic and all I wanted was to hold my dads hand, for the fear of the unknown as the doctors were checking my heart. For the concern of too much stress on it during surgery. My heart tests came back normal and eventually they knocked me out for the night with medicine.
I remember standing when they didn't think I could. Hooked to a big plastic belt for the physical therapist to old and assist me with. I remember walking and my surgeon as surprised as everyone else but extremely pleased. This was day 2. I couldn't talk, open my eyes or lay flat for weeks. But I listened, I listened a lot. The sacrifices my ICU nurses make to take care of me and others is incredible. I remember when they removed the drain out of my head. I remembered when they told me that the container clipped to me held my brain fluid, didn't phase me. I remember the surgeon telling my family it was benign. I remember the tear and cheers of joy. I remembered the smile I gave a smile that had been lost through the journey.
Exceeding expectations, I was released to go home after a week in ICU, strong enough to skip the rehabilitation center, but a long journey a head. With lots of self motivation.
THE ROAD WITH NO SHORT CUTS.
The world spun around me, too dizzy too walk more than a few feet and too weak to pick anything up. Too scared to turn my head or move. I sat for weeks with my eyes shut, communicating by nodding. They steroids caused me to be over heated then freezing cold at all times. I'd wake up in a sweat or stomach turning. Headaches became the norm. Sometimes manageable and othertimes, frightening. My walking was always supervised, everything was always supervised. My mom became my full time nurse. Being sure I was given the correct medicine with food at the appropriate time, weening me off the steroids and pain killers.
I would track my steps with my Fitbit excited to get 200 steps in one day which was extremely difficult. I didn't want to get up but my dad would set a timer for ever hour to go off to get me moving. My highlight of the day and goal was walking down the driveway each day to get the mail (mail that was to my parents not me). Milo ( my 1 year old pup) stuck by my side but was ever so gentle.
Sleeping was a challenge, was unable to lay flat, so you can imagine how hard it was to fall asleep. I had to have someone check my stitches and make sure no fluid was coming from them (lovely). All was healing well. My senses were heightened, I could here things most people couldn't hear especially when I couldn't open my eyes (too sensitive to the light and enhanced the dizziness) I could hear music from my neighbors house with TV on in my house. It was insane.
I had to rely on my family greatly, to walk with me, feed me, set my shower up, (chair and towel for i couldn't stand on my own and tub was too dangerous) I do remember my first shower, I was too nervous to touch my head or wash by the stitches. I was not allowed to be left alone for weeks at anytime. Someone close by at all times, even the bathroom someone would have to stand outside. Most of this is a blur to me now, I was overwhelmed with emotion during this time, so grateful to be alive and able to walk without a walker (just a sway to my left) but I didn't have the energy to cry, hell I couldn't open my eyes for it was too hard.
2 weeks post surgery I would return to see my surgeon, it was a difficult trip an hour into the city and every bump in the road bothered me. Once I got there I had to walk inside 20 feet to then sit down to rally myself and tell myself I can do it, to make it to the elevator. I made it finally with my moms help, had my eyes closed for most of it. I remember checking in, looking around to see the waiting room full, my heart sunk into my stomach, I knew most if not all the people in there have or will have a similar story. I don't rememeber much more other than the nurse cutting some of my hair when removing the stitches (I already lost enough when they shaved 5 in up) I then passed out on the nurse and eventually was told everything looked good and was free to go home. It had only been 2 weeks but I felt like I was getting worse, I had just finished my steroid treatment. The surgeon explained the steroid powered me through the past two weeks and now I've hit a wall and its on me to rally and motivate myself to get better now for the steroid is not pushing me. I slept the whole ride home.
3 weeks post surgery, I was becoming less sensitive to noise and light and was able to start watching a little TV. Ellen quickly became apart of my routine. 3pm I watched Ellen and ate ice cream when I had to take my medicine (my body was losing weight burning so much energy to recover and muscle deteriorating from being bed ridden). Ellen gave me something to look forward to and smile about each day. They were reruns, but I didn't mind. Few friends came to visit, I was not much of a host- being that there was nothing I could do. The get well cards were still flooding in.
The next 4-5 weeks were all pretty similar; learning how to walk further and with opposite hand with foot, something I had to think through, in order to do. My big social outings were to physical therapy 2x a week. 8 weeks went by, with lots of help from my family. I decided I was ready to return back to work and move back to the city (which I now have realized I was not ready). 12 WEEKS MINIMUM is my advice for anyone that is to undergo a similar surgery. Returning back to work about one month too soon, I felt it. Barely making it through a day, exhausted, always with a headache no office accommodations for my head or neck. It created awful tension headaches and more challenges than my body was capable of taking on. Each week was a struggle and most weekends I would crash and need to rest and sleep. Couldn't see my friends, go out, go out to dinner, etc. I became a hermit, luckily I had my boyfriend and dog by my side, so I wasn't entirely alone.
Few months go by, still symptomatic, every few weeks it improves but then I add a new task to my routine and symptoms return. Dizzy, cannot go into places with a lot of light or reflection, for it enhances the dizziness. Long conversations, I get lost in and lose my train of thought easily. Long conversations also take a lot of energy and by the end I could take a nap. I easily get sick with any and every cold. Started physical therapy with someone new in the city who understands neuro therapy and we began to strengthen VOR and balance. I can't walk in a straight line or turn my head too quickly without getting the spins.
FRUSTRATION begins to kick in, feeling dizzy, sick, headaches and exhaustion. The emotional aspect is starting to catch up, I start wishing it had never happened and wondering why me. It isn't fair, I want my old life back. I want to see my friends, go out, run errands with out being scared, run a work meeting without getting lots in my head or too tired. I want to run, sprint, jump without my head hurting or my shoulders and neck to not be painfully stiff.
Days were hard to get through, emotionally and physically the holidays have been taking a toll on me.
So I am moving into my 6th month post surgery as of TODAY :). Finished my 4th month of physical therapy with many more months of physical therapy to go. I honesty thought I'd be feeling much more like myself 2 months ago. When I was diagnosed I had to have surgery so quickly. There was little to no time to really learn about my condition or recovery process. So you can imagine how this recovery feels like there is no end in sight.
There have been a lot of struggles I've had mental and physical. There has become a lot of silence in my head, silence that makes my mind fine pockets of shadows, shadows I've tried to stay as far away from as possible. But I'm getting tired and discouraged more easily since this road has no short cuts. I still cannot have long conversations without my brain fatiguing and becoming foggy. Bright lights hurt my head and make me spin. I cannot walk in a straight line of certain things create that fog around me, I've started to get accustomed to this, its become my norm. Leaning over gives me a painful rush and Milo loves to play fetch. If it rains,snows or is muggy; game over, the air pressure I feel. I'm constantly tense, muscles are in knots refusing to release.
2018 is around the corner and I've been trying to remind myself of the good. I want to have the attitude I had prior to surgery, inspire, motivate and help others. Positivity, I swear my positive attitude going in to surgery helped tremendously. I want to bring meditation and yoga back into my life and most important stay positive- even when at times I just want to say this f'ing sucks. I've come so far in 6 months, even though at times I lose sight. Sure, I have 6 or so more months to go but I am improving. This experience has introduced me to many peopl who have also been challenged and these strangers have become my friends and support system. For we are as one told me BTW brain tumor warriors and have the invisible sickness, most are unable to tell how we feel or been through for most symptoms are unseen but felt.
Most importantly I am ALIVE, I may have no feeling on part of my skull and lots of side effects, but I'm here for a reason - I do hope this year of 2018 is my year of health and help. I have been active on social media trying to talk and help as many people as possible. Sometimes we all just need a friend who understands the similar challenges. I plan to raise money for ABTA (American Brain Tumor Association) by hosting and running a 5k team. I hope to write and publish my children's book and start a non-profit with efforts to help the brain tumor patients and families. Finally hope to host a fitness class where proceeds go to charity. As you can see I have lots of plans in 2018 but first to safely recover and take the time I need. 2018 the year of health, help and me.