Gratitude Game

As I laid on my bed, I tried to muster up the emotional and physical willpower to pack my suitcase. I felt like a two year-old who wanted to throw a tantrum and scream, "I don't want to go!  You can't make me!"  I didn't want to spend another week away from my family, being poked, prodded and experimented on. I pulled the covers over my head and hid from myself, but I didn't go away. 

I forced myself to grow up and I slowly slung my feet to the floor, head spinning and vertigo upset.  I put pretty much the same clothes in the suitcase from last week, freshly washed by a loving friend, sitting there neatly folded on the floor.  As I packed Sammy came in and wanted to help me. He opened my sock drawer, pulled out a pair of red fuzzy gripper socks, held them up and said, "Mom, you have to take these, they look so nice on you!"  I hadn't worn them for over a year, so I assume he likes me in the color red? I promised him I would wear them. 

Sitting on the hospital bed being prepped for Gamma Knife, the nurse questioned my red fuzzy socks, telling me she preferred if I wear the hospital issued socks, but I proudly showed her that my socks too had grippers on the bottom so I was in no risk of falling. She relented.  I sat on the bed, terrified of the pins that would soon be screwed into my skull while I was awake.  I thought, "What a messed up business this all is."  The doctors and nurses were telling me how grateful I should be because I was a good candidate for Gamma Knife, instead of having to have brain surgery on the tumor in my front lobe. Yet, I couldn't feel the gratitude. I wanted to, but I was too afraid.   Although, looking at my fuzzy red socks made me think of Sammy and my other precious children, which helped make me feel a bit more brave. 

It turns out the anticipation and aftermath of getting a Halo, as it is called, was worse than the actual procedure.  While they where numbing my scalp with local anestetic, it felt like my head was being stung over and over by a swarm of angry bees. They gave me some happy medicine to help with the anxiety, but the pain was intense. I couldn't feel the screws going in, but there was lots of pressure. After it was on, I was able to regroup and go to a place of gratitude. 

While I am in the bowels of MRI and radiation machines, I feel like I am being swalllowed by a robot, so I distract myself by playing what I call the Gratitude Game. I have a conversation with myself and with God about all my blessings and the many things I am grateful for: modern medicine, my faith and belief in God, pain medication, my husband who massages my feet, friends and family, whom I list by name and think of them each individually, health insurance, and my game continues until the machine decides he is done with me and pushes me out.  

Unfortunately, while I was distracting myself inside the machine, the doctors found another brain tumor which they needed to treat. Miss Mellie, as we call my melanoma, had been a very bad girl. I think she needs to go to timeout. Who does she think she is giving me another brain tumor in the two short weeks since my last scan, even if it was a small one?  She is no friend of mine. 

The day after the procedure I noticed, despite the fact that the medicine had worn off, I couldn't feel the top of my head. My scalp was numb, but it felt like swarms of spiders would randomly shoot and scury across the top; creepy, must be a side effect in honor of Halloween.

Also, I could hardly put my thoughts  together without stuttering or pausing.  I was searching for words, looking around inside my head, but I found only blank slates, emptiness.  I cried, frustrated.  I couldn't express myself, and when I did, it was halting.  When telling me about the side effects, they never mentioned frozen thoughts and scalp. I called the nurse and she told me, it rarely happens, but it is nothing to worry about. My speech has come back, but I suffered nerve damage when they put the screws in and they will take time to repair themselves. 

Despite the bad news of the new brain tumor, I got good news about my lung radiation plan and I haven't had any severe side effects from my first dose of the immunology drug Keytruda. (Which costs a small fortune of about $13,000 per single dose.)  Normally, I would have to set up shop in Rochester for seven weeks, getting radiation five days days a week. The thought of me being here until almost Christmas, puts me into a tizzy. If that were my treatment plan, they might make me the pych ward's newest patient.  Luckily, they are going to give me the same amount of radiation in a shorter time, instead of doing it in thirty-five treatments, I only have to have five tumor killing doses lasting a week!!! Did I really just write I am excited I only have to have five doses of super powerful radiation, yup, I did. I am so grateful.