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I'm Still Here/Five Years Ago Today

Posted Jun 15 2009 12:05am
My tea this morning came with a message:

Life is a constant flow of love.
Your participation is requested.

Regardless of the source, I needed this thought today--even if it did come attached to a teabag :).

I've been overwhelmed and tired recently. I'm attributing the feelings to the end-of-the-school-year-to-beginning-of-summer transition with stuff everywhere and five children now at home most days. Teenage and toddler dilemmas combined with constant flow to and from the pantry and refrigerator, housework, doctor's appointments, shuttling kids all over town, no reliable sitters, a traveling husband and limited contact with friends (& the outside world in general) makes daily life feel like the movie Groundhog Day (where Bill Murray lives the same day over and over). I am trying to find the energy and will to do it all. With a smile.

Today is a big day for me. Five years ago at this exact time, I was under anesthesia having brain surgery--and Chris was anxiously waiting to make sure I'd come through the surgery safely and to hear whether the surgeon was able to remove the entire tumor.

In some ways, that day seems like a lifetime ago. But it isn't hard to get right back to that place and time when every step felt wobbly, when every moment felt tentative and fragile.

Soon after the surgery, when I finally knew how it would all play out, I began having the strangest sensation. It was an unusual and powerful mixture of gratitude and anxiety that would bubble up and leave me gasping for breath.

It seemed like any time I was alone--which was only in the shower, or once in a while in the car--I couldn't stop it from happening. I kept thinking, How did that happen? How close did I come to leaving Chris and my kids without a wife and mom?

I had few symptoms, but my tumor was very large, and had displaced my brainstem. It was close to compromising my vital functions. After surgery, I was told how it could have been catastrophic, how it could have shut me down quietly and without warning. Even though the tumor is gone, I don't know if I'll ever feel safe again. And I don't think that is a bad thing.

When I start to get frustrated with all the obligations of daily life, I need the reminder that Life is also a constant flow of LOVE, not just chores :). How lucky I am to be here, to have the chance to see my children grow and to be surrounded by love. I have so many reasons to be thankful...


I found a file on my computer today: Acoustic Neuroma 2004. Here is an excerpt of an essay I wrote following the ordeal. It is called, Can a Brain Tumor be a Gift? (Yes)...

I t was a busy day at the ENT’s office and I waited two hours to see him to find out what was on my scan. He was straightforward and kind. “I’m sorry to tell you this. You have a sizeable tumor and unfortunately surgery is in your near future. But it’s just time for school to be out and we have so many summer plans. Nodding sympathetically, he said, “Your summer is going to be a little different than you had planned. I do not do these surgeries, but I have already talked to an outstanding neurosurgeon about your case. Someone from her office will be in touch with you this afternoon.”

I walked out to my car feeling hungry and numb. I called my sister-in-law knowing she was waiting for my call. I didn’t want to scare her, but I didn’t have a lot to reassure her of, either. I think I’m going to need some help was all I could think of to say. It was the understatement of my life. I need crazy help. I need someone to step into my life and take care of my home and my children for a while-- and by the way-- I also need someone to save my life.

O ne week after finding out that I needed surgery, Chris and I were meeting with the Columbus-based neurosurgeon Dr. Martyn had recommended. We had talked to several people we know in the Columbus medical community who also assured us that this particular surgeon was very, very good. She was calm, smart and blunt. She tried to prepare us for what was ahead.

In our meeting I learned that not only could my hearing not be saved (I still thought that was possible), but also I heard very clearly that I also might be permanently handicapped and possibly disfigured. What? I was not prepared for this.

The detailed surgery could take anywhere from 8-18 hours depending on how difficult the tumor was to remove, she said. I would be hospitalized for 5 days to 2 weeks, followed by months of recovery. I would probably need physical therapy of some kind. Because of the delicate location of acoustic tumors and the necessary manipulation during surgery, neurological damage could occur in the course of surgery, she explained. The way the brain is wired, the nerves are all very close together, which complicates things greatly and makes the operation risky as well as likely to produce complications and other undesirable outcomes. Acoustic tumors also often contact the nerves that go to the eye muscles, the face, the mouth, and the throat, face and tongue. A problem with these nerves could cause facial palsy, vision and other eye problems, weakness of the shoulder, weakness of the voice, taste disturbances or even difficulty swallowing--and these problems could be permanent.

I didn’t have many of the usual symptoms, which are: unsteadiness, double vision, facial numbness, ringing in the ears, fullness in the ear and headaches. I only had minor hearing loss. Usually, the rule is the bigger the tumor, the higher the chance of complications. I didn’t focus on this. I thought, I’m young and healthy with few symptoms. I will do well with this. I have to.

I was told that after the procedure I would have a hard time with dizziness, balance, and with focusing my eyes, at least for a time. If I had trouble swallowing, I might need to be tube-fed, so I wouldn’t choke. I may even need a tracheotomy to help me breathe. Further surgeries might be necessary.

It wasn't likely, but I could die during surgery. Surgery and anesthesia always pose potential problems, but since acoustic tumors are located adjacent to the vital centers of the brain responsible for control of breathing, heart rate and blood pressure, I was told that the brain itself could also be injured during the removal of the tumor.

If I made it through the surgery safely, I could experience a multitude of post-surgery problems, which included the possibility of lingering taste disturbances, ringing in the ears, double vision and severe, persistent headaches. I was told I might need to wear a patch over my eye if I developed eye complications. I am a writer, and I love to read--I need my sight. Please don’t let anything happen to my eyes, I thought.

Some of the worst news, though, was that I could experience full or partial facial paralysis, which could be temporary or permanent--and would mean that I might never be able to smile again. I might never be able to smile? You have got to be kidding. This cannot be happening. (I had my friend take pictures of the kids and me before my surgery, not knowing if I would ever look or feel the same.) I thought, I will do whatever it takes, rest, physical therapy--whatever--to return to myself after this thing is gone.

I listened and quietly cried. This was a lot of information to process. My thoughts went to my husband and kids. I’m so sorry. I’m so sorry to do this to you, was all I could think. I went home and prepared to make some of the hardest phone calls I’ve ever made. I didn’t even tell my parents that I was having an MRI. How was I going to spring it on them that I had a brain tumor?

****

I n the end, my surgical team did exactly what they promised. They did their part perfectly and removed the tumor while protecting my adjacent nerve function. (And the entire operation took less than 4 hours!) They left me otherwise as they found me. You thank someone for a ham sandwich. How do you show your gratitude when someone saves your life? Money…medals…steaks… jewels? Nothing comes close.

I don’t know if it was divine intervention, the very best doctors, the power of prayer and positive thinking, luck--or a combination of these things--but I made it through the surgery with the best possible outcome.

****

T wo weeks ago, Chris and I traveled from Columbus, Ohio to The House Ear Clinic in Los Angeles, California so that I could have surgery to remove the tumor that was compressing my brainstem. Dr. Rick Friedman and Dr. William Hitselberger performed the operation at St. Vincent’s Medical Center in Los Angeles. You will not find two men more skilled, humble or compassionate.


Just ten days ago, I had brain surgery. I am currently recovering by the beach in Santa Monica, California. Yesterday I ate orange pancakes and blueberries for breakfast, sang “Happy Birthday” to my 2-year-old daughter over the phone, and sat by a pool overlooking the ocean holding hands with my husband. I am going home in three days.


In a time when the state of the world is uncertain, sometimes scary and often sad, I’ve been reminded that people are inherently good. So many people have offered help to me and my family, including many who don’t even know us personally, but have heard of our situation through friends. I have been brought to tears by the generosity of others. All I have been able to think is, How am I ever going to repay all this goodness? I am going to be gracious, kind and forgiving. I am going to share my story. I am going to value life and love like it’s my last day on earth.


I am missing a little hair and am stitched, stapled, bruised and tired--but alive, healing and very grateful. I can’t hear out of my right ear anymore (this doesn’t bother me at all and I can still hear perfectly out of my left). The right side of my face (by my cheek and the corner of my mouth) are a little numb, and my right eye doesn’t tear as well as my left eye. My right eyebrow seems a little lower than it was before the surgery and I have a tiny bit of swelling still by my right ear. My eyes get tired by the end of the day. I still feel a bit tentative about moving in tight spaces, or being around lots of people, but I am only 10 days into my recovery.


I have noticed improvements every day since the surgery, and I know these issues will be gone shortly. I am deaf in one ear, but otherwise almost exactly the same (of course I am forever changed by this experience, but I will return to life as I was before, which is what I wanted).


I ache to see and hold my children. I want to pack lunches, shop at Target, and wash the windows. I want to take family vacations and celebrate birthdays, holidays and other special occasions. I am done holding my breath, waiting to see if I’m going to be okay. I am fine--more than fine. And I’m ready to get back to my life.


Today I feel great. It's hard to believe all that has happened in the last month--it has been a whirlwind filled with some of the darkest and some of the sweetest times I've ever known. I have had the best medical care, the most amazing, life-affirming experience, and a wonderful time in California with my husband.


I am grateful, happy and strong and my body is healing well. I have no pain, and I am feeling more energetic with each moment that passes. By the end of the summer, this will be behind me. I will be completely recovered and able to care for my busy, sweet young family once again.


What I've learned…


P eople have asked, "Were you freaking out when they told you?" My answer: It was like my world had been filleted and laid out in front of me for me to understand. Usually, when I try to understand something, I look at all the angles and immerse myself in possibilities. I know this is how I work. I have to consider everything. This time was very different, welcome--actually easy. Something was saying:

This is just another challenge~~a stage of becoming.
It is one of many challenges you have faced.
You will face more and you will get through them, too.
You must accept this.

I did. It was all incredibly clear. There was no time for the complicated and the clarity was a gift. I've embraced this because I had to--I wasn't given a choice in the matter. What I could choose was how I would respond to this task, and I did it with the deepest convictions and powers of my mind, heart and soul. I began to think and repeated to myself:

I have everything. I am safe. I am loved. I am not alone. Everything I need to get through this-- it's all right here. I am strong, and I am going to lean on the strengths and spirits of others.

I envisioned only the positive. I chose to feel love, warmth, peace and all the goodness in the world. I learned to be at peace you have to admit and truly believe "I have it all."


For me, this is:
Family.
Good friends.
A sense of self.
A sense of humor.
Faith.
Joy.
Hope.
Peace.
Wonder.
Contentment.
Love...

Life is beautiful and life is fragile. Surround yourself with things you love today and take a moment to give thanks. I know I am
....


*This was a temporary break from regularly scheduled programming. I have several posts, which actually deal with Ds, planned for this week :). Check back if you're interested!

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