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.
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.
ANAwareness Week is almost upon us!! Every year we have our own week in the spotlight as part of Brain Tumor Awareness Month. It runs the 2nd week in May, from Sunday the 8th until Saturday the 14th this year. Brain Tumor Awareness Month is well under way with several events having already taken place. It’s not too late however to get involved. Head on over to the Acoustic Neuroma Association website’s ANAwareness page and look for an event in your area. There you can also find treatment options, how you can donate, learn about support groups in your area, or even how to get press coverage on your Acoustic Neuroma experience.
May is also Better Hearing and Speech Month. Many of us with an Acoustic Neuroma suffer from hearing and speech issues. Now is the time to take action!! Educate those around you on the importance of early intervention into speech and/or hearing issues. Remember, an ounce of prevention is worth a pound of cure.
If you need any help finding information, I strongly urge you to visit one of the websites listed below. You can also leave me a comment and I’ll get back to you as soon as I can.
Resources for Acoustic Neuroma:
Acoustic Neuroma Association
National Brain Tumor Society
Vestibular Disorders Association
American Speech-Language-Hearing Association
American Academy of Audiology
American Tinnitus Association
P.S. – If you know of any other good professional resources, please leave them in the comments and I’ll update!!
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.