Free at Last!!

I awoke on my fifth day

With as uneasy feeling, like my progress had kind of stalled. I really, really wanted to leave, but I had had a steady CSF fluid drip for the last few days. My surgeon said if it continued to leak on Friday they would have to do a lumbar drain. I had been cut into a couple of times already, and I wasn’t looking forward to a third incision. I dreaded him coming in that morning.

The moment of truth had arrived

My surgeon came to see me around ten o’clock and asked how I was doing. “Pretty good”, I said. All the while thinking, “Ok, let’s get this over with”. I really was thinking the worst. I had tried to stay positive during this whole experience, but it was becoming increasingly difficult. I had relinquished all control, that is what the dreams the night before meant. Now my day and possibly the weekend or longer hung on one thing, that damn CSF leak.

He asked me to sit up and lean forward, allowing any liquid in my nose to flow freely. I sat there quietly waiting for it to happen. Several minutes went by, but to my surprise nothing came out. I could not believe it. I had finally passed my final test for release!! He said he was happy that I showed no further sign of a CSF leak and would be released sometime in the afternoon. I. Was. Ecstatic.

Progress, progress, progress

My mom came by shortly afterward and I gave her the good news. She was really happy for me, happy that I was making good progress. And so at just passed two o’clock in afternoon, I gathered all my things and was wheeled out of the hospital. I sat there for some time while my mom went to get the car. There were a lot of people in similar situations as me all around. I wondered to myself what ailments the people around me had. Some of them must have had it worse than me. I felt fortunate to be leaving. Leaving, and hopefully never returning. Free at last.

Happy Mother’s Day!!

Today is a special day for many of us. It’s a day for us to celebrate the most important person in our lives. I’m of course talking about Mother’s Day. I owe so much to my Mom, I don’t think I’ll ever be able to pay her back. My Mom gave me life, fed and clothed me, gave me all the love and support that she could. She has also been my biggest supporter during my AN journey. She was the first person I called after I got my diagnosis. She lent me a shoulder to cry on as I told her the news. My Mom even took out a personal loan because I didn’t have insurance and couldn’t afford surgery. She was with me everyday while I was in the hospital. She helped me stand for the first time post-op; and she was by my side as I took my first wobbly steps. Watching with pride as I’m sure she did when I took my first steps as a toddler. She even took time off of work to care for me while I was in recovery.

We would take daily walks together, each day choosing to walk in a different direction, to walk on a different terrain. We would make the drive to Stanford Hospital and Clinics each week for my physical and occupational therapy sessions. Having to re-learn the most basic tasks was extremely frustrating, but humbling as well. Those days were hard, it was a struggle, progress was painstakingly slow. My Mom was supportive through it all though, always there with kind words of encouragement.

It’s been 3 years, 8 months and 26 days since my surgery. Sometimes my life feels like a roller coaster, stepping higher and higher, or spiraling out of control. The one constant through it all has been my Mothers’ unwavering love and support. I simply do no know how I could have gone through all of this without her. This day is a special day for us all, but when you really think about it, everyday is Mother’s Day.

Looking Back

I cannot believe it has been 3 years already since I made this video. Given that it is brain tumor awareness month, I feel the need to share it again. Many people are diagnosed with an Acoustic Neuroma every year. Many who are newly diagnosed are scared of having to face this challenge alone, afraid of the outcome, thinking that life will never get better. Well I think that I am a good example of how good things can turn out. Sure I now have single-sided deafness. Yes, sometimes my balance is a little shaky. You know, sometimes I have a hard time finding the energy to get out of bed. And every once in awhile, I have a bad day. Through it all though I remember to smile, and be thankful that I am alive. To not get caught up on the things that were taken from me, but instead, to focus on all that I have. I don’t have any disabilities, I only have challenges.

Sleepy Days Ahead

 

The next couple of days in the hospital are a blur. Sure I remember seeing my family, friends, Dr.’s, therapists, going for walks, eating; but I slept like I had never slept before, or since. And it wasn’t restful, peaceful sleep either. It was rather unpredictable, a few hours here and there, wide awake at 1:00 AM and out like a light at 3:00 PM. I had incredibly vivid dreams as well, like I was falling through the sky, through clouds; with no end in site…Then I would literally feel myself falling out of my bed, only to be jarred awake when I hit the guard rails. I would spring up in a flash not knowing where I was. The room was dark and dead silent. And then I felt the all too familiar tug of the IV’s in my arms. Suddenly, it all came back to me, and I fell back to my pillow and let out a long sigh.

I was in and out of sleep for the rest of the night again. Until morning arrived and my routine started again. At this point I was starting to get, well…tired of being in the hospital. I was bored, I was tired, I needed a shower…For some reason or another they always talk about people getting sponge baths in hospitals…Well I never got one. Then there was constant checking of my staples and stitches in my abdomen. I remember that on one particular day, the nurse who checked my staples resecured the bandage on my head rather tightly. Within minutes I had a mind-splitting headache that rendered me incapable of doing much of anything. My mom must have picked up on my discomfort as she asked me if I was alright. I guess maybe she had noticed that the nurse had wrapped the bandage on my head a little too snuggly as well. I shook my head “no”, and she asked if my bandage needed to be loosened, and I nodded “yes”. That’s really all I could do at the moment. So she loosened it for me, and the pain slowly started to recede.

One thing was hindering my progress, one thing was standing between me and freedom; a possible cerebrospinal fluid (CSF) leak. See CSF surrounds the brain and spinal cord, and during surgery a hole is cut into the membrane (dura) that surrounds the brain. If the dura does not heal adequately, CSF will continue to leak out and the pressure around the brain drops. So everyday my doctor would visit me, and everyday he would walk me through certain tasks. Among them was I had to lean forward and see if any fluid would come out of my nose. Some fluid during the initial days post-op was normal, but beyond a certain point it was determined that you had a CSF leak. I was going on four days in the hospital and three days of steady leakage, not a good sign…

One Interesting Day

On my second day in the hospital they were getting me ready to move out of the ICU and into a regular room. First though I had to go through some prepping. They removed most of my IVs, the one in my ankle; one in my left forearm…the weirdest one was actually in my wrist, in my radial artery. After they removed it the nurse had to put pressure on the puncture wound for several minutes to stop the bleeding.

One of the most unpleasant moments during my hospital stay was when they removed my catheter. No, I can honestly say that those few seconds were the worst of my entire stay; that includes you know, the brain surgery. How some people deal with those things every day of their lives I will never know.

After that unpleasantness the nurse informed me that Dr. B had lifted my liquid diet restriction, and that they were now serving dinner; she handed me a menu. I was floored!! Their menu was extensive!! My eyes were bigger than my stomach though and I ended up ordering steak, clam chowder, mashed potatoes, and cheese cake. She took my order and said my food would be delivered to my new room. I was so excited!!

Before they took me to my room we headed down to the imaging center to take another MRI. This would be the baseline, which all of my future MRI’s would be measured against. I usually have no trouble with MRIs; I have to admit though this particular one was very uncomfortable because I had to go to the bathroom really bad. I laid there trying not to fidget for 45 minutes. It was torture. For a brief time I wished that they had left the catheter in!!

When I finally got back to my room, my dinner was waiting there for me, as was my mom. I could not believe my eyes when I removed the lid from the tray. The food smelled so good. I don’t really remember what happened after that. I got about half-way done though and just couldn’t eat anymore. That’s the thing about surgery, it kills your appetite. After I ate, my mom and I talked for a bit. Sometime later a physical therapist came by to help me get started on vestibular rehabilitation. I got up out of bed and we went out to the hall and walked for a bit. I could only do so much though because I was still attached to my IV pole. But we did some slow walking and it felt great to be up and about. It was actually painstakingly slow, and it took intense concentration. I had to look down at the floor the whole time. If I tried to look around while I was walking or close my eyes I instantly lost my balance. My therapist was very patient with me though and said we would work on some more difficult tasks like walking backwards and up and down stairs as soon as I got my IV’s out. After that another therapist came by to go over my speech therapy. She gave me a whole list of exercises to do for tongue flexibility and strength, which in turn would improve my speech. This took another level of concentration, and it really took my last bit of energy for the day.

After a while I fell asleep. I was exhausted, and it was the first uninterrupted sleep I had had in what seemed like forever. I usually don’t remember my dreams, but I remember dreaming that I was falling; falling from the sky, through the clouds. Suddenly I was jolted awake as I felt myself falling off of the bed. Luckily for me the bed had rails or I would have had a close encounter with the floor. I was sweating profusely and completely out of breathe. For a moment I sat up and didn’t know where I was. I looked around frantically, searching for a familiar sign. I felt the familiar tug of the two IV’s still in my arms, and suddenly it rushed back. I fell back to my pillow and let out a long sigh of relief. I laid there in silence for a while, hoping to fall back asleep, but it was no use. I got up and decided to go for a walk. I reached for my IV pole, and leaned on it for support as I got up. I slowly made my way to the door and opened it. The unit I was in was dead quiet. No one seemed to be around until I made my way to the nurses’ station. As I passed by a nurse asked me if I was alright. “Yes”, I said. “I just can’t sleep, so I decided to go for a walk”. “I’ll walk with you”, she said with a smile. We had a pleasant chat as we walked. I learned that she had just moved from Boston to take this nursing job at Stanford, she learned that I had just had brain surgery.

As we made our way back to my room I mentioned that I would like to stop by the restroom first. She said, “Ok” and followed me in. She stood behind me and put her hand on my shoulder to help steady me and looked away. For some reason it just was not happening for me and I laughed and said, “Sorry it’s taking me a minute”; she giggled and said, “It’s ok. I felt a bit funny about it as she was a very attractive young woman. But we both had a good laugh about it and after I was done she helped me into bed and then I drifted back off to sleep.

 

The Quiet Before the Storm

I showed up the day of surgery in the early hours of the morning with my mom, my sisters and a check in hand. The hospital was still fairly empty, much like the roads at that hour. You may think that I must have been nervous, but I was surprisingly calm. The admin checked me in and then a nurse escorted me to the preparation room. The room was pretty large, with beds lining both sides all the way down. Each bed was still empty; she took me to the nearest one on my right and gave me instructions to get dressed into the gown and cap on the bed, put my things into the bag provided, and then climb into the bed. Then she left and pulled the curtain around the bed to give me some privacy. I did everything she told me to and then got into the bed. The blankets were really warm, I was pleasantly surprised. I think they do that on purpose, to make you feel cozy and comfortable…relaxed.

After a while my mom and older sister Jessica came in to visit with me. They explained that I am allowed visitors, but only two at a time. We sat for a few minutes and talked, though I cannot remember what about. Because of the anesthesia, I don’t really remember anything that happens roughly 15 minutes before I lost consciousness and 15 minutes after I regained consciousness…or so they tell me.  After we talked my mom gave me a hug and said she would go and let my sister Lauren in. Lauren came in and gave me a hug.  I’m sure we talked about something, but again I can’t remember what about. And after that, I just remember waking up in the ICU.

My bed was next to the window, the blinds were open and it was dark outside. I remember a nurse coming over to check-in on me. She asked me how I was doing, and then ran me though a whole banner of tests. She asked me to smile, blink, squint, raise my eyebrows, stick out my tongue, squeeze her hand; she asked if I could feel her touch my toes, she checked my eyes. This happened every hour for the entire night, and what a night it was. Every time she came to check on me she shined a light right in my eyes, what a way to wake up. I vaguely remember the nursing staff having to give me different IV’s and injections during the night as well; plasma, insulin, and a host of other things that I can’t remember exactly.

Sometime in the morning Dr. B came in to check on me, he ran me through some of the same tests. He smiled really big when he saw that I could smile and had complete control of my facial muscles. Facial paralysis was his greatest concern from the beginning. He told me to relax and rest up, and that he would check back on me the next day. “Hey”, I said. “How long was my surgery?” “13 1/2 hours”, he said. “Wow”, I thought. I was glad that the surgery went well, granted it was a little longer than expected. I wanted to revel in that thought, but honestly all I could think about at that moment was how annoying my IV’s were. I had five total; one in my right hand, three in my left hand and forearm (including one in the artery), and one in my left ankle. I could barely move without tugging on one of them.

My attention turned towards my stomach when I saw what they had brought me for breakfast. Here’s a hint, the Dr. had ordered an all liquid diet for me…oh joy. Hmmm, there was jello, chicken broth, apple juice…this was going to be tough. Everyone always jokes about hospital food, but I had never actually stayed overnight at a hospital before. Things didn’t look very promising so far. After I had finished the “hospital” food, my mom came in to see me. We talked for a bit, mostly about me haha. Basically I broke it down for her like this; I was tired, groggy, in pain…but so glad to be alive!!

After some time one of the nurses came by to check on me. She ran me through all of the usual tests, and then she asked if I wanted to get up…”Uh, ok”, I said. I thought, “She can’t be serious”. But she was. So she got on my right side, and my mom got on my left side, and slowly, I got up. It was a strange feeling really. I couldn’t support my own weight!! I had never felt so weak. Even with them holding me up I was still hunched over like an old man, my legs trembling uncontrollably. My brain was looking for a signal from my right vestibulocochlear nerve, but no one was home. It was at that moment that I fully realized the task set before me. I smiled, almost in tears now. “I got this”, I thought to myself.

So Little Time

I only had three weeks to prepare for my surgery. There was a lot to do. I was renting a room across town from my parents house at the time. My mom insisted that I move home so she could look after me during my recovery. So the following weekend I helped her clear out my old room. Then I boxed up everything that I did not immediately need, called a few friends, and moved everything I had back home. After I had gotten settled in I sat quietly for awhile on my bed. It had been an emotionally draining week. I thought about all of the things I still needed to do, still so much to do…

I wanted to get in the best shape possible so that my recovery went well. Dr. B said I shouldn’t lift weights anymore because there was already too much pressure in my head. So I decided to keep doing my martial arts training, but just taking it easy, no sparing, etc. I also got back into swimming more. I had access to a swim center that I worked at. So I decided to swim 5 days a week, upping the distance I swam every day. Every time I felt like giving up I just thought about how much harder my recovery would be. That thought kept me so motivated.

Seeing how I was uninsured at the time, I had to find a way to pay for all of this. It’s crazy to think that I live in the most powerful nation in the world, yet healthcare is something that I, and every other citizen, needs to worry so much about.  My mom and I took a day off of work to apply to county services. We spent the better part of a day going into different offices, waiting in line, filling out the paperwork, sitting down to wait some more…only to be called up and told I do not “qualify”. Then they would say I might qualify for another service, and give me more paperwork and send me to another office. It was a very frustrating day, being denied again and again and again. We went home and my mom took a nap on the couch, she was exhausted. I was undeterred though, and got on my computer to do more research. All of a sudden I got a call from Stanford. The lady on the other line said I qualified under their assistance program and would receive a discount on services. I thought to myself, “Ok, that’s great. A discount is usually what? 10-20% off”. So I asked her how much the discount was. “You qualify for an 80% discount” she said. “Huh?? Come again”, I said. “80%”, she said. I was floored!! I was so excited I couldn’t contain myself!! I informed my parents and my sisters as soon as I could. Everyone was super happy for me. Looks like I won’t be in debt for the rest of my life after all.

Even with a sizable discount, the surgery was still going to be expensive. To help pay the hospital bills some of my family and friends organized several fundraisers. In the coming weeks, both pre and post-op, we actually held a total of 6; and raised about half of my quoted hospital expenses. I still needed to show up on the day of surgery with the 20% that I owed though. So we had to get a personal loan…again, I am really shaking my head at the US healthcare system.

I was pretty fortunate that my sister Lauren knew a lawyer who was willing to draw me up an advanced care directive and will for free. That really helped as I could not afford it on my own. I wasn’t really thinking I needed either of them, but it’s better to be safe than sorry. I also had to put so many things on hold, including; school, work, training…everything that I wanted to do sort of took a backseat to this thing in my head. I really don’t know how I held it together except that I had a wonderful support system, kept a positive attitude, and exercised as much as possible.

Another incredible thing happened during this time, people came out of the woodworks to help me in my time of need. And I mean A LOT of people. Family, friends, friends of family, friends of friends…even complete strangers. I really was in awe of all of these people coming together to help someone in need. It was especially amazing because you always hear about so many bad things in the news. Having something positive happen, something so close and personal to me, quite honestly restored my faith in people.

Out of Options

I showed up at Stanford Hospital with a bit of an entourage. My parents and my sisters had taken time off to come with me. I appreciated the support. I think in hindsight it was important for me to not feel like I was going through this alone. That has been one of the key factors throughout all of this, I have a great support system.

When I got called into the Dr.’s office we first met with a nurse practitioner, Rose. Rose was great. She walked me through the whole process of how the appointment was going to go. She also informed me that my brain stem was compressed by 7mm!! That was of great concern to her, because by all rights I should have been dead. We were all very surprised and concerned as well. Later I did a little research and learned that was the cause of many of my symptoms. After talking with us Rose took us in to see Dr. B. Dr. B is an Otolaryngologist, “Wow, now that’s a mouthful”, I thought. Dr. B is a tall, slender, middle-aged man. Had a firm handshake and a pleasant, confident smile. I liked him immediately.

Dr. B introduced himself and sat us all down in his office. He gave us an overview of what an acoustic neuroma is, its’ symptoms and how it’s treated. Just listening to him talk we could tell that he was very experienced and confident. The 3 basic treatment options that he went over were surgery, radiosurgery (radiation therapy), and watch and wait. Since my tumor was so large he said that I only had one option, surgery. His greatest concern was my facial nerve. So he decided that he would use the translabyrinthine surgical approach because I didn’t have any useful hearing in my right ear. He explained that with this approach they would go straight through my ear canal and drill through and remove my inner ear bones. This would give him the best view of my facial nerve, which will reduce the likelihood of damaging it, but would also leave me deaf in my right ear. A condition known as Single-Sided Deafness, or SSD. Since I was almost totally deaf in my right ear already it seemed like a fair trade…my hearing for my life.

I had some pretty serious questions about the surgery and my recovery. Dr. B explained to me that they were going to fill the hole they drill into my skull with fat from my abdomen. I thought, “He has got to be joking!!” But no such luck. I jokingly asked if they could remove a little extra from my stomach and I could leave the hospital with a 6-pack. Everyone laughed at that. Even through the toughest times it helps to have a sense of humor. Dr. B smiled a little and shook his head no. “Damn”, I said with a smile. On a more serious note though, I told him that I have some pretty active hobbies, and I love an adrenaline rush. What I was most concerned about was taking hits to the head. I do Muay Thai, among other martial arts. Would I be able to take a blow. “In time”, he said. “Wow”, I thought. “How about flying? Or SCUBA diving?” “In time you can do anything you want. The sky is the limit”, he said. That made things seem not so bad. I’d hate to think I couldn’t do what I love.

The surgery needed to happen soon, so they set a date three weeks away. The date they set was actually on my dad’s birthday, which he didn’t like very much. But oh well. Stanford is a busy hospital, so we were in no position to request a different date. As we left Dr. B’s office, my sister Jessica looked at me and said, “This is the Dr.” We all agreed.

Lost In a Daze

I sat there quietly, lost in thought, and yet my mind was blank. I was lost in another daze, not quite unconscious, not quite conscious. All I could hear was my heart pounding, all I could feel was the steady stream of tears down my face. Suddenly my phone rang and I sprang up to answer it. It was my older sister, Jessica. Over the tears I told her that I have some terrible news and I needed her to come over immediately. I only showed so much emotion when it was REALLY warranted, so she new it was serous. She said she would leave work right away and come over. I hung up and sat back down. Then one by one I went through the same conversation with my mom, then my little sister, Lauren.

One by one they came over, and over and over again I told the same story. They were all obviously very concerned. Jessica asked if the Dr. had told me what kind of tumor it was. He hadn’t. She sifted through my scans and came across a form. It outlined what kind of tumor I had and how big it was. A 5.4 cm Vestibular Schwannoma, also known as an Acoustic Neuroma. None of us had ever heard of it, so we immediately got on my laptop and Googled it. I was a bit relieved to find that it was a benign tumor and it was completely outside of the brain!! My anxiety eased a bit when I read that, and I let out a sigh of relief.

We sat together for awhile after that, just sifting through article after article. Eventually someone got the idea to see what we could find on Youtube. That was a somewhat bad idea. There were some survivor videos, they were very informative. Other videos showed actually surgeries!! We quickly put the laptop down after watching a minute of one of those videos. That was a bit too much for all of us. We sat there for awhile longer, me in a half daze now, and them trying to console me.

Not long after my mom suggested that we get out of the house and get something to eat. Anything to get my mind off of this I thought. We had lunch, but for obvious reasons I just wasn’t able to enjoy myself. After lunch we went back to my place and just spent some time together, talking mostly. As day turned into night they slowing started to make their leave. I went through my usual bedtime routine that night. It’s one of those things everyone has done so many times that they don’t even have to think. I sat in bed quietly for a short time, thinking. The following week I had my appointment at Stanford.  What would they say? I really had no idea. I was so exhausted from the day’s events that I just couldn’t gather my thoughts. I decided that obsessing over it was not helping, and would probably drive me crazy. So I turned out the lights and got into bed. I fell asleep as soon as my head hit the pillow.