4 West: Rehab #1:

I don’t remember a whole lot about being on the rehab floor. I would end up here three different times. My first stay here would be the easiest. I hadn’t been hospitalized very long, but it had been long enough to require physical therapy to restore my strength. I also was having a hard time with my vision and speech. I didn’t realize this at the time, but I was talking very slowly. It was hard for me to get out what I wanted to say. Eventually I realized I was talking slowly, but I couldn’t speed up my speech.

I had many therapists. I remember Emily, Lisa, Guillian, Cheryl, and Angela. They were all very good and patient with me. Being in rehab wasn’t so bad because it meant I was getting better and getting ready to go home. I missed being at home, and I missed my cats.

A New Year-2006:

Now that my brain was draining, I hoped to get my vision back so I could return to work and life in general. I continued outpatient rehab several times a week after being discharged from the hospital. Jon was my physical therapist I would see twice a week. My husband would escort me to my appointments. I also started seeing Ann for occupational therapy, and a girl named Elizabeth for speech therapy.

Jon was a nice young man, who had me do all kinds of balancing and strengthening exercises. Ann was a nice and fun woman, who helped me with visual and reflex coordination. My left side was weak from one of my surgeries back in December, and I still had a pretty big visual field cut on my left side. I wasn’t very fond of my speech therapist. She asked me if I had always talked slow. I was trying to talk normally, and I didn’t know I was talking slow. I felt like she was putting me down. I wondered how good her speech would be after 9 brain surgeries, and if she had a clue how hard I was trying to get better.  I didn’t see her very much after that. I decided to focus more on the physical therapy instead.

My insurance (gotta love ’em) only allowed so many visits per year of rehab, so I had to limit my visits to save some in case I needed them later. Jon supplied me with items and exercises to do at home. My husband was really good about helping me. I was getting stronger. My brain was slowly coping with the field cut. I could see a little bit more on my left side. No miracles yet, but I still had hope. I wasn’t yet 30. I didn’t want my life to be over.

The dreaded diagnosis: February 2006:

I was doing better throughout January of 2006, but this steady climb came to a halt, and for reasons unknown at the time, my condition declined again. Jon gave me a test they use in PT to determine how well a patient is doing. This tested balance and coordination. When I was doing well, I scored in the 40’s, but in late January/early February, my score was a 15. What now? I thought. I was becoming more unsteady. My coordination was poor, and I became weak. I was unable to walk without assistance.

At least my mind was still sharp. Losing your mind has got to be one of the scariest things. I was mentally sound at this point, but physically, I was a mess. On January 31^st, 2006, I ended up back in the hospital at SWMC. I couldn’t walk or stand. My gait had become so unsteady I had to be wheeled into the hospital in a wheelchair.

I was thinking something went wrong with my shunt again. How many more surgeries could my brain handle? I must have had another MRI because I remember lying in bed one evening, waiting for Dr. Shanno to come in and report my results. My family was with me, and it seemed like a long time went by. We visited and watched a little bit of TV. I don’t remember the exact date, but I think it was a Tuesday or a Wednesday because American Idol was coming on that night. I also know that it was close to February 8^th because my older sister was turning 31 on that day and I hadn’t been shopping for her yet.

Dr. Shanno came into my room later that evening. I think it was around 8pm or so. He said he had bad news. My tumor had started enhancing with iv contrast. This told him that the tumor was now becoming malignant, or cancerous. The inflammation around the tumor was causing my unsteady gait.

I was shocked. I expected another shunt malfunction, and instead I got a cancer diagnosis. I didn’t know what to think. I remember asking Dr. Shanno how scared I should be. He said they thought it was a Glioma of some kind, and that it would “get me eventually.” How does he know? I thought to myself. First he thought it was a pineocytoma, and now it’s a glioma in the midbrain. He’d been wrong about that. The truth was that nobody knew exactly what this was because it was too dangerous to even do a biopsy of the mass.

I was stunned that night. My parents called my sisters to let them know what was going on. They were both in California, and they made arrangements to fly up. I remember talking to Stephanie on the phone. I told her I felt so bad because I was unprepared for her birthday. She thought it was silly of me to even think about that at the time, but I had always put a lot of emphasis on peoples’ birthdays.

We had been planning to watch American Idol that night, but after my shocking news, I didn’t feel like it. I was sad. I wanted to talk to Skip, the Pastor who had married us. I felt so alone and lost. I was having a hard time dealing with this news. I must have mentioned to my mom that I wished I could talk to Skip, because I saw him the next morning. He prayed with me, and I felt some peace.

I remember wondering what God wanted from me. If this was it, and this thing was going to “get me,” I had better be prepared for the afterlife. I thought of the CCR song, “Bad moon rising.” There’s a line that says, “Hope you have got your things together. Hope you are quite prepared to die.” I’d always hoped I’d have time to get my affairs in order and wouldn’t die a sudden unexpected death. But I wasn’t ready to do this at 29.

I had been living a very healthy life for many years. I ate well and exercised a lot. My cholesterol was great. I had a friend, the gal who sang at my wedding, who would always say that it didn’t matter what you did-that you could be the healthiest person in the world and still get cancer. Her mother had passed away in October of 1997 from cancer. I never got to meet DeAnn’s mom, but we had many conversations about cancer while working nights together. I would joke with DeAnn that here I’m the healthy one who eats good and exercises and would probably get cancer before her even though she smoked and ate poorly.

And here I was, living my fear: That everything I did didn’t matter. Was DeAnn right? Do the things we do to try and delay our mortality not matter? Was this cancer something I was born with, lying dormant within myself until finally seizing an opportunity to grow? Was God still trying to get me to do something? Was I not listening to Him, and He had to turn me upside down and shake things up again? What was the message here? I had no idea.

Because I had talked about cancer so much, both in my training as a pharmacist and with my friend, DeAnn, I had oftentimes wondered if I would do chemotherapy and radiation if I were faced with this illness. I wasn’t sure what I would do. I knew that treatments thus far were really just poisonous. I had toyed with the idea that I would try something natural, but you really don’t know what you’ll do until you have to do it. Ultimately, I decided to put on my boxing gloves and beat the hell out of this thing.

And a new battle began…