Welcome to My Personal Page
April 27, 2014
i just finished my first week back at work. It was great to see friends and students!
It's almost race day!
Another year has gone by - it's hard to believe. Today I was looking for pictures from last year to post and I realized that I have been on chemo therapy since Michael was 6 months old. He is 2. How's that for a reality check.
5 days of pills 23 days off repeat. repeat. repeat.
Posts pre 2012:
Update as of 4/11
This weekend I begin round 8 of my Temodar.
As much as my experience with chemo has been a vacation compared to what others go through, I still dread it. I thank God that I only have to take pills. However, having my white blood cells and platelets checked every Thursday still sucks-the phlebotomists know me by name.
Being a part of the exclusive group wearing yellow is really special and overwhelming. I realize that the word special is corny, but I can't think of any other way to describe the feeling. The group of survivors and fighters start the race together wearing the signature color. Seeing the kids wearing yellow shirts is what makes me feel most emotional. They are kids ? what else can I say. They should be outside getting muddy or crashing a bicycle into a tree.
In previous years I have felt like a phony walking out with the other survivors- as if my experience wasn't real enough because I didn't have any horrible, long-lasting effects. My hair didn't fall out; all of my organs still work.
I wonder how it will feel this year.
In case you don't already know the tumor came back.
This time it has spread to the corpus callosum and is not operable. The advised treatment is chemotherapy, which has been going remarkably well. I just finished round 7, 5 more to go. Ups and downs, but overall success.
We are very lucky because NIH has taken me on as part of a study of oligodendrogliomas. They jokingly say that if you're going to get a braintumor, oli is the best one. In their own humorous way the doctors have communicated that they have a lot of experience treating recurrence of this type of tumor.
So, I guess that means...
From prior pages:
In 2004 I was diagnosed with an oligodendrglioma after having a series of seizures. However, I had successful surgery.
In the Moment
My arms were immobilized, velcroed to the bars at either side or my body. I tugged gently to try and free them. I was awake, but couldn?t move. My mouth, my throat, and my lips felt sore and refused to cooperate. I couldn?t speak. Wet tears cried in muffled sobs, ?Where am I? Why am I here? Why can?t I speak?? The moan-like cry was enough to get the attention of Sean who tried to reassure me that everything was okay. I wish I could recall his exact words.
The Emergency Room staff had to secure me to the gurney because I was so combative when they were trying to insert the breathing tube. I don?t remember that, but I definitely remember the catheter. Even now, three years later, I cringe at the thought of it. When I was prepped for surgery at Washington Hospital Center, I was more worried about the catheter than anything else.
The fear I felt in those moments is the only fear I can recollect. Apparently the tumor, an oligodendroglioma, was growing in my left frontal lobe which affected my emotions and judgment. That coupled with the three grand mal seizures I had suffered only hours earlier left me feeling rather flat and insensitive to the feelings of my loved ones.
My sisters tease me now about my demeanor and lack of tact in telling them of my condition. According to Carrie I simply blurted, ?Guess what?! I have a brain tumor and I am going to have surgery to have it removed.? I laugh about that now, but part of me feels badly for making a terrible situation worse for those who love me most. It must have been painful to watch me experience all that I went through. I have never witnessed someone have a seizure. I hope that I never do. But my students, co-workers and family all had the unfortunate privilege of watching me flail about on the floor.
I don?t know who visited when or in what order. I remember Sean and Courtney, my parents and sisters, Mary Ellen and others. Other faces flash through my mind when I really try to call to mind, but I wonder do I really remember their visits. Or do I know they were there because I have been told so.
That?s the thing about memories I guess. How much do I remember? How much has been told to me after the fact? Does that really matter?
Only a Minute Or So
You?ll just have to wait.
I?m busy battling my brain:
I?m quite the contortionist
Or so I?ve been told.
My soul bellows-
A fit juxtaposed
By stillness, silence, sleep.
Drained and disappointed, I awake.
The one year mark
I can?t believe that it has been over a year since my surgery in March. Remember when we first found out about the tumor, I don?t think I had too much of a reaction. Was I scared? Sometimes I wonder about that. I should have been.
JOnce in a while I have a flashback to the moments at Washington Hospital Center. The thoughts are fleeting, but I feel a sense of cold and calmness. I was asked to change into the hospital gown, which I didn?t mind too much because the nurse gave me a pair of hospital socks. Since my feet tend to get cold quickly I loved the little slippers with the treads on the bottom. I smile even now when I recall you asking for an extra pair. You have a certain charm that often works to our advantage.
I don?t remember too much from the days immediately before and after my surgery, but I do recall asking you to cover all the mirrors in the house. I didn?t want to see my unrecognizable self: two black eyes, a partly shaved head, and a swollen face. I knew that I could handle brain surgery, but I didn?t think that I could deal with ugliness. My sisters tried to reason with me, as did you; it didn?t work.
Don?t make me look.
I don?t want to see,
Not a peek not a glance-
That face is not me.
I probably would have forgotten the night we were hanging around in our old living room, when one of my sisters snapped a photo of you and me. You are such a card! I can?t believe that you really put on a head wrap to look like me! Every time I see that picture I think about your love for me. Through the seizures, surgery, and medication-you have stood by me always telling me that I am beautiful. At the time I appreciated your sentiments and efforts to make me feel better. I don?t think I believed you then, but that doesn?t matter now. All that matters is that I have a now and a future--both of which include you.
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