Adult Ependymoma: A Patient's Story
about me

 

"Super Survivor"


I was born on March 10, 1970 in Washington, DC and I am the youngest of four daughters.  My family is the highlight of my life.  My father graduated from the US Military Academy at West Point in 1954.  After his required service, he resigned from the army to work in the private sector, specializing in medical diagnostic products.  He died in 1998 of melanoma and lung cancer.  He has always been my role model;  I think "what would Dad do" whenever I act in my own life.  He and I were best friends, sharing a love of sports especially.  My dad had the purest, biggest heart of anyone I've ever met - the way he loved his girls, my mom, his country, the littlest spider, our toy poodle, a fierce thunderstorm, Army football.  Gosh how I still miss him!  My mother is a great mom who facilitated all of my fun and success in extracurricular activities.  She also instilled in me a love for words, reading, current events, dogs, flowers and trees.  She has adapted to my needing her as an adult, sharing her house and life with me, keeping me motivated - I am very grateful.

My sisters, Lyn, Margaret and Elizabeth, are extremely special and I dearly love my nephew, Warren, whose birthday is May 25, 1994.

I was fortunate to attend terrific schools, beginning with the Fairfax Christian School in Fairfax, VA.  From fourth to eighth grade I attended the Langley School in McLean, VA where there were top-notch teachers and small classes.  I enjoyed every subject.  In ninth grade, I found my niche at Madeira, an all-girls school in McLean, VA.  I loved Madeira!  I liked English, history and chemistry and joined the student government.  

I played lacrosse, basketball and tennis during high school.  However, my talent growing up was swimming;  I swam year-round for many years and even joined the swim team as a walk-on (that was hard!) during my first year at Princeton.  My happiest memories are of swim meets, long practices and the fun team camaraderie I experienced from a young age.  I also spent wonderful summers in college as a swim coach - sheer fun in the sun with adorable kids.  I still recall fondly a period in 1996-1997 when I reunited with my coach Rod Montrie and we swam twice a week together at Madeira after work.  It felt great to be back in the pool again.

My Princeton years (1988-1992) were typical of all lucky college students- I studied hard, socialized hard and loved every minute of it.  I was part of a successful effort to achieve varsity status for the women's golf team.  Now it is one of the top women's golf teams in the east.

I love watching birds.  My life list is modest (300) and I hope to add to this for the rest of my life.  Birding is a terrific way to get to know a specific area and it's a great excuse to visit exotic places!

Listening to music is my favorite thing to do.  I enjoy everything from Bach and Beethoven to the Beatles and the Bee Gees!

To say I like golf is an understatement; rather, I love it!  As all golfers know, it is both frustrating and rewarding.  I sure miss playing the crazy game and I am very sad when I try to take a practice swing and fall over.  I think often of the summer of 2003 when I played regular rounds at Duck Woods in Kitty Hawk, NC with my wonderful golf buddies and my game was something I could be proud of instead of embarrassed about.

The monuments of my life are my friends.  Princeton and Madeira gave me incredible treasures - friends with whom I stay in regular touch even as we have moved all over the country.  These friends supported me in 2000 when I had my first surgery and have been great supporters since.  I could write a separate note just on the impact my friends have had on my life;  it's true when people say that it's their friends and family that keep them motivated to survive.

After college I spent a year in Chicago as a Princeton Project 55 public interest fellow working in community revitalization.  I then moved back to VA and worked as a financial systems tester and trainer.  I also continued my love for tutoring by volunteering as an ESL teacher one evening a week.

My life changed on a dime in 2000.  I was finishing my MBA at the College of William & Mary (which I loved!) and was set to start a consulting job, but for several months I became sicker and sicker until Margaret came to my rescue. I was rushed first to the student health center and then to the emergency room.  We found Dr. Sekhar through the referrals of Dr. Mokie Shakoor (father of one of my best friends) and Dr. Melanie Buttross (our neighbor and dear friend).  On May 3, 2000, Dr. Sekhar resected a very large ependymoma in my fourth ventricle at George Washington University Hospital. I had a tough time after the operation and was in the hospital nearly two months.  Between 2001 and 2003 I became more like my old self.  In April 2003 an MRI revealed a new tumor, a tremendous setback as I had of course hoped to be tumor-free for the rest of my life.  Between March of 2004 and December 2005, I had two more resections, a shunt inserted, radiation and chemo - wow - fighting a brain tumor can be a full-time job.  Truthfully, the first recurrence was the defining moment for me.  In 2000 I tackled the tumor and hoped against hope that I'd deal with it once and for all.  So when it showed again in 2003 I knew that minute that I was in real trouble.  As Alice Trillin might have written, the sleeping dragon opened its eyes and suddenly, just like that as the MRI report came over the fax machine, I no longer was in remission.   

After my first operation I was active in an online support group for adult patients with ependymomas and their caregivers.  This group is the only group for adult patients and caregivers who are dealing with or have dealt with one or more ependymal tumors.  My time in the group was invaluable to my recovery.  I learned a lot about the tumor itself, the treatment of it, and the different effects it can have on people.  I could compare my progress to others like me - this would not be possible if I had to rely on a group close to my home simply because there is no group like it near me, even in a city as big as Washington, DC.  Having instant, online access to a network of supporters as close as my computer was amazing therapy.  Besides the benefit of being able to talk about a wide-range of topics such as MRIs, post-operative deficits, life decisions, medical bills, most of all I have made some wonderful, empathetic friends in the group who I know will always be there for me.  I can't imagine not having had this group!

The truth is I can't even remember what it was like to have a healthy body.  I grieve for my former physical self.  "Grieve" sounds like a strong word, but it's fitting and I bet other patients can relate.  I grieve for the loss of the life I had always thought I would have, one with my own family, my own babies, my own animals, a career, a "normal" life like my peers.  I miss just being able to get in the car and go to the grocery store on my own.  I would like to get dressed and not struggle to do every single thing.  I would like to take a shower and not worry about falling and hurting myself.  I hate that I am scared to be alone.  I despise the swimming sensation all over my body and head and the feeling that I'm going to lose my balance if I don't watch out every minute.  I wish I could just walk normally again.  I am tired of the dread I feel every day.

I grapple with the questions, "if this is as good as it gets, is that enough?  Do I have the will and strength to persevere?  Can I achieve my version of a beautiful life?  What do / can I hope for?  Will I ever come to a peaceful acceptance of what has happened to me?"  Frequently, honestly, I am not so sure of these answers.  But even with all this brain tumor hardship, truly I feel fortunate:  I have had an incredible life - I have traveled, received love and care from my family and friends, met terrific people along my brain tumor journey, and given a lot of love to so many people who are special to me.  I have had wonderful pets that I loved dearly.  I have been privileged to have an amazing education and was poised to lead a valuable, long life.  Still, as lucky as I have been, I do not want my life to end.  I will fight this recurring ependymoma disease as hard as I can though I am trying to come to terms with the fate that I have received with my health.  Still, as hard as I struggle every day and how tired I am of the pain and discomfort, I am seeing first-hand how the human spirit just won't give up that easily even when the body is losing its edge.  I am lucky I have so much, and so many special people, to try hard to live for.

[2004]



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