13 Feb LIFE AFTER BRAIN SURGERY – MY HEALING JOURNEY – Part 1
Hi friends! It has taken me while to sit down and write this. I felt like I had to emotionally heal from this life event before I could start to put my experience to paper for everyone to read. Let me start by saying how INCREDIBLY grateful I am for everything I have and everything I have been through. That is not lost with me. I thank God everyday to be alive and to be on this journey. I have learned so much about myself through this experience, and I have grown more than I have ever would have thought possible. I have also touched and helped others which is the most gratifying feeling.
I am not writing this for sympathy or attention. I am writing this to share my experience, for you to really understand and know me to the core; and for this to reach others who are going through tough times to know you are not alone and that you can heal your body and mind. There were times I felt lost, empty and hopeless. There were times I felt depressed, anxious and sad. There were times I felt abundance gratitude and joy. It has been a rollercoaster. Ready to go re-live it with me? Then stick around and read below.
Let’s start by hearing the words “you need emergency brain surgery”; that in itself I could write a blog on. In short, I felt validated and hopeful and grateful. (how did I get to this point? You can read my previous blog here) I had been feeling terrible for so long, I would do ANYTHING to feel well, even if that meant brain surgery! I can honestly say after hearing those words though, at the time fear did not cross my mind. There was never a thought of “what if I do not make it” “what if there are issues” “what if I wake up a new person”…etc. I am actually surprised I did not experience this. However, looking back I saw how strong and badass I really am. You know that saying “you don’t know what strong is until it is all you have”. That was me, I did not have a choice. I knew in my heart this needed to happen to heal me from the core and bring me a life less of pain and full of joy and abundance.
Within 24 hours of hearing I needed surgery, surgery happened. Our minds are powerful and the more we feed it positive thoughts, the more positive life we have. I had Clark by my side the whole time, who was my rock through it all. I had my family there, and friends checking in nonstop. I was lucky. I was looking forward to a life without pain. I was looking forward to feeling well. I had not felt well in over a year, I would do anything to feel better and be able to live my life again. And I know those who are chronically ill feel the same. Do not lose hope, you will heal!
So, here we are, life after brain surgery. I wake up from a 5-hour craniotomy brain surgery to my new life ahead. And for those of you who do not know what a craniotomy is, without being too graphic, I will explain… It starts with a hair cut – really though. The surgeon starts by shaving a part of the head they will then cut open and use to access the skull/brain. They cut from the top left of my forehead in a C-shape along the middle of my head down to my ear. They then were able to cut and remove a part of my skull to fully access the area of the brain where the cavernoma was bleeding. From there, all I know is that they removed the cavernoma and hemorrhage, and repaired everything. (I do not need to know anymore than that ;-)) After the surgery was successful and complete, they reattached my skull with titanium screws (Now I totally understand the term “they have a screw loose) and sewed me up.
I was then taken to ICU to be closely monitored. I had people coming in my room every 30 min (it felt like) asking me to repeat words, describe photos, read sentences, etc. I remember thinking “why are they asking me all this stuff?”. I was very drugged up and feeling minimal pain. However, I felt very alert and with it.
I was in ICU for 3 nights and then a regular neurosurgeon in-patient room for another. It was honestly like going from the Four Seasons to the Best Western – seriously. You get all the attention in ICU and a private room (with a view of the Hudson). On the regular floor you have a buzzer for help and a crazy roommate. (If anyone reading this has been admitted you know what I mean). Needless to say when I was able to go home, I could not WAIT to go to my home.
But ok, back to after surgery – The first day after surgery I remember getting really bad headaches/pain and then I would get morphine and nothing hurt at all. It was immediate relief. I mostly slept the first day and honestly do not remember much. The second day was more difficult, I was starting to feel my body and the pain from the surgery. No more morphine, I was awake more often; although I would fall asleep mid-sentence often. Keeping my eyes open for more than 30 minutes was a task. Our bodies heal when they rest. I needed rest and rest only. The 3rd day I was more alert, more tubes were being pulled out of my body and I was able to eat a little bit and converse. I was sharp, alert and with it when I was awake. I surprised my family and friends with how alert and conversational I was. I think my brain was SO happy to not be hemorrhaging anymore it could function better. It had been bleeding on and off for a year, I did not even realize how much it affected my daily brain function!
While I still in the hospital, I saw an OP and PT and passed my tests with them – walking, standing, steps, eating, bathroom ..the whole deal. I was just checking all the boxes to get out and go home and heal. The last night I was in a regular room on the main floor. I had only 1 IV and a drain tube that was out of my head still attached to me. I was on very little pain medication and I was ready to go home and heal. Clark had been sleeping in a chair next to me for the past 5 days, he never complained for a second, but I know he was ready to go home too!
Finally, the day arrives when I was able to go home. My surgeon came in bright and early (as he did every morning – I’m talking like 6 am) and gave me to go-ahead to go home and heal. Also, let me mention, my neurosurgeon was amazing; of course because he saved my life, but he had the most calm and gentle energy. I felt SAFE with him as his patient and him as my doctor. This is so important when you are working with doctors. You need to TRUST them. If you have a funny feeling about a doctor or something feels off, get a second opinion ASAP. I did not have time for a second opinion, but I am so grateful for him and I would not have needed one!
I was so happy when I was cleared to go home. All I wanted was a shower and be in my apartment. But, I was also a little nervous to leave the medical team that was constantly watching over me, however I knew I was in good hands with Clark and my parents. As I was getting discharged, the nurse came in and said she was going to remove my brain drain tube and my IV. Okay, no big deal…..OK- kind of a BIG DEAL! I am glad I did not know what was coming. That drain tube coming out of my head was the oddest feeling in the world. I cannot even describe it. It felt like when you are fighting to get spanx off your body and then relief afterwards was worth the fight. It was not a good feeling getting it out, but I felt so much lighter and more free with it gone.
I still remember the feeling of getting in the wheelchair and getting wheeled out into the world (out of the hospital). I had not had a breath of FRESH (new york city) AIR in a week. I had not been able to feel a breeze on my face or interact with humans besides my family and medical team. I felt like a whole new person (which I was) being born into this world again. The person I was before I went into that hospital and the person exiting the hospital was a new person, and I felt it already.
Adjusting to being at home came with a lot of emotions. The gratitude continued to pour in – I was alive and had all the love and support I could have asked for. My parents lived in my apartment with Clark and me for over a month, helping take care of me while Clark worked. I needed the help and I welcomed the help. I never tried to act like I could do it. I surrendered and it felt really good.
The first two weeks home were rough. I went home on zero pain meds – I did not want any of that in my body anymore, I wanted to heal not continue to poison my body. ( I know there is a time and place for everything, but I was fixed and I choose to heal holistically) Although I had to be on anti-seizure medication as a precaution, which I was fine with because I knew that was the safest thing to do and it was only temporary. I had a list of restrictions, but to be honest, at this time, it did not really matter. All I wanted to do and all I was able to do was rest, sleep and eat. I was not able to bend over, lift more than a gallon of milk (almond of course ;-)), no exercise (except walking), no alcohol, etc. to name a few. I could barely stay awake through the day. I would sleep for 18 hours of the day. My mom had to bath me – yes, I felt like a toddler. I had to be very careful around the incision and making sure I was keeping it clean and no pressure from the shower head could touch it. BUT, that first bath after getting home from the hospital….. was one of the best feelings in the world.
After about 4 days after being home, I woke up one morning extremely nauseous, dizzy and feeling terrible; I felt that something was wrong. Since surgery I was sore and tired, but I did not feel like this. After surgery doctor’s worry about stroke, infection, hemorrhaging…etc. and so I called my doctor office and told them my symptoms. His medical team advised me to come in and meet with the surgeon. Mind you, this is NYC in August, it was 90 degrees and it is not a gentle stroll over to the hospital. I could have called an ambulance but that seemed super dramatic. So, I put my shoes on and got a cab. My parents came with me, of course. The traffic was horrific, the cab had no air conditioning and the stop and go was enough to make me pass out or throw up. Needless to say, we made it. I remember the whole time in the cab thinking “you are ok, you are ok, you are ok”. It worked, I made it!
I saw my surgeon, we talked about my symptoms and he told me I am totally fine; (haha – phew) but he said I need to eat more food and to breath. BREATHING IS SO IMPORTANT. It supplies oxygen to our body and brain which does a lot of things but mostly promotes HEALING. He basically told me I needed to relax. He must have felt my nervous, anxious, fearful energy I was feeling that day. I felt relief after I heard him say I was okay. I felt like “I had brain surgery, but I am going to heal and be OK – there is no need to worry”. Unconsciously I believe my fear was starting to set in….
Over the next few weeks, I got into a routine, I would sleep from 9-9 (roughly), eat breakfast, and then take a walk down the block or over to the park. I thankfully lived on Central Park West, which was such a blessing to be able to walk without much traffic in my way. I would then come back home, take a nap, wake up, eat lunch and attempt another walk. Each day I was able to go further and further, most of the time holding my moms hand for balance. I would take an afternoon nap again and wake up to chat with Clark and my parents as we would eat dinner, watch the US open ( to this day, the US open will always remind me of my surgery. I watched every single match when I was awake – haha). and hang till bed. Looking back, it is so comical that my parents, Clark and I lived together in NYC in my 600 sq foot apartment. My parents slept in my bedroom, I slept on the coach (I was the most comfortable there) and Clark on an air mattress on the floor. Can you even imagine? At the time, I did not think anything of it. Looking back I laugh.
So, it was time to make a decision. My parents had a life back in Michigan they needed to get back to, I still needed a lot of help and support, and Clark needed to work. What do we do?
At this point, Clark and I had been dating for over a year, and we knew we wanted to be together for the long haul. He is the most amazing man and has been my rock through this whole health journey. He is a nurturer and he was always there for me – and at times it wasn’t easy. I know the universe brought us together so we could fall in love and so I did not have to go through this alone.
Thankfully Clark was able to get a new job in Michigan, the lease on my apartment was up Oct. 1st and we had the opportunity to make a smooth transition back to Michigan. So, we had made the decision it was time to move back home to home so I could heal and be around support I needed. I needed my family and friends. I needed a caretaker essentially and my parents were willing to be that for me. It was an easy decision to make at the time, but now I see and feel how abrupt the move really was.
We hired movers, packed up my apartment in a one Uhaul truck and we started the drive back to Michigan. At this time I was not cleared to fly. So I drove with my parents in a car, and Clark followed us the Uhaul, by himself (lol) – see what I mean.. the sweetest man.
My doctor said I was cleared to move home as long as I had a neurosurgeon back home I could see if I needed to. It was a struggle to find a neurosurgeon who I could trust if something went wrong. I thankfully was connected to a doctor at Henry Ford through a family friend and he thankfully took me on as his patient if something were to happen. This is rare though. A lot of doctors (especially surgeons) do not like to come in midway through another surgeons work. However, he understood my situation and was kind to accept me as a patient.
When we moved home, we moved in with my parents. Together again, but this time in a MUCH larger living space. Clark and I had a little basement apartment (haha, I am laughing while writing this). Here is the thing, when you are sick, all you care about is getting better. I could have cared less about where I was living (as long as it was safe and comfortable), what clothes were on my body, what my purse looked like, what shoes I was wearing etc. All I cared about was waking up everyday and feeling better than the last. Clark was so supportive. He took a new job downtown and was living in his girlfriend’s (parents) basement. How redic? But it worked and it worked really well.
While being back home, reality started to set in. I was starting to feel physically better, the gratitude of being alive was not as apparent in my everyday and I was starting to panic about my “new life”. A life without driving, running, drinking, staying up late, going to concerts, lifting my nephews, no high intensity workouts or hot yoga. I life NOT in New York City, and a life that was not independent. A completely new shift…. So how did I cope?… Part 2 is coming soon. <3