Wednesday, September 3, 2014

D(iagnosis) - Day

I was scheduled for surgery the morning of Thursday October 29th.  The surgeons would remove the primary tumor (AKA the Blob) and insert a drain for the excess cerebral spinal fluid that had built up.

It is important to remember that at this point I had yet to be formally diagnosed with cancer, I just felt like I knew that’s what it was. In the early morning before my surgery I wrote the following entry in my journal:
When the doctor called with my results my mom answered the phone and I could hear her conversation from the other room.  When I heard I just got my shoes on, printed directions to the hospital and packed a bag.  Later at the hospital everyone was amazed by my laid back easy going nature.  I can attribute this to 2 things gratitude and positivity.

In a hospital it is easy to be taken over by negative thinking.  But I think that is just a waste of energy.  Instead I am planning on suffocating cancer with laughter and smiles, smothering it with hope, positivity and with the love and support of my friends and family.  That's not to say that I go around perpetually grinning.  Sometimes it's a struggle to stay positive.  That's when I just think of all I have to be grateful for.  Today among other things I am grateful for non-skid socks, visiting friends and apple sauce.  It's these rays of light that help me stay positive.

I know I am only at the beginning of my treatment but I can definitely say I am not putting up with cancer; Cancer's putting up with me!
Analysis of the tumor confirmed that I had cancer. My diagnosis was high risk anaplastic medulloblastoma with metastases to the spine.
I don’t have a distinct memory of someone telling me that I had cancer, which makes sense since I already believed that I had cancer and I was pretty drugged up and out of it in the days following the surgery.

The last thing I remember being told before the surgery was that my Aunt Katie was coming from St. Louis. When I saw her in the ICU the first thing I said was. “Thank you for coming.” I am told I continued to thank her for coming every time I saw her after that.

In the nine days I was in the hospital following the surgery I had many visitors and received many cards and gifts. The outpouring of support at the beginning was tremendous.

Over the next several days I began to learn how to walk and take care of myself again. I also had double vision and had to wear an eye patch to see straight.

 Walking felt so strange. My legs felt so heavy. It was hard to think about how walking worked because it wasn’t something I ever had to think about before. I was really wobbly at first. I always had to have someone walk with me and hold on to the gait belt strapped around my waist. Eventually, over the next few weeks, walking felt normal again.

During my stay we also learned what my treatment plan included: 6 weeks of daily radiation followed by 6 rounds of monthly chemotherapy. My treatment was fast and intense because my tumor was of the fast growing variety.

At my first appointment with my oncologist, Dr. Sarah Leary, I elected to participate in a study that was trying to determine if some common additional treatments made the standard treatment protocol even more effective. The study had 4 arms:
1-      Standard (Radiation followed by chemo)
2-      Standard  + concurrent chemo with radiation
3-      Standard  + cis retinoic acid (Accutane – acne medication, which had been shown to stop tumor growth)
4-      Standard + Both concurrent chemo and retinoic acid
I was randomized to the fourth arm.
          From the first drive to the hospital throughout my stay there and for several weeks following I felt like I was floating in a state of serene calmness. Nothing bothered me and I didn’t worry about anything. I just floated through life. I don’t know if it was the trauma of brain surgery or if it was my body’s reaction to being alive or something else entirely. It was such a strange sensation. It was like I was on a different level or in a daze.
            Soon enough my serene state would end and emotions would begin to flow.

Mischief Managed,

Run of Hope Total: $1,215

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