Magical Cat's Corner

BRAINS!!

I have never been creeped out by zombie movies... in fact, I like them. But when you're having your brain operated on, it puts a new spin on your attitude towards zombies. A few weeks ago, I was on vacation in Oklahoma with my family when my right foot went numb. We were in Tahlequah, OK, the Cherokee capital. I stepped out of the truck, and noticed my shoe had fallen off and my foot was on the concrete, but I couldn't feel it. Hmmm, that was strange. Over the next few days, it became worse, until my whole leg was numb. Within a few more days, my arm was numb. I contacted the NIH, and my husband and I flew out there immediately.

It was Friday night when we arrived. My oncologist came into the hospital at 11:30 PM on a Friday night to give me an exam! Is that service or what?? I had an MRI the next day, which revealed that one my skull lesions had decided to start growing inward and push on my brain. To complicate matters, it was also tapped into a major blood vessel that drains the sinus. I would have to have surgery, but they would not be able to remove all of the tumor in the vein area. I would also need radiation.

On Saturday, Dr. Pacak came to visit me, and he brought me a bouquet of sunflowers... on his own birthday! The doctors at the NIH are just wonderful. I cannot say enough kind words about them. They put me on steroids to control inflammation. I also started on Phenoxybenzamine in preparation for my surgery. Pheochromocytoma patients must take an alpha-blockade before any surgeries in order to control blood pressure spikes. On Sunday they sent me home. Sunday was my birthday, so I was really looking forward to getting home and seeing my kids, especially after hearing that I was going to need risky brain surgery. James and I ended up spending six hours at the airport because the flight was delayed. We made it home at 9:30 PM, and Tess was asleep. She tried to wait up for me but couldn't make it. My mom had dinner and hot cider made. Happy birthday to me!

I was due to come back to the NIH for my surgery in one week. I didn't make it that long...my symptoms continued to worsen. It was very scary how fast the tumor was growing. I could feel myself getting worse by the hour. I had double vision, trouble walking because of the numbness, and I was very dizzy. We ended up going back to the NIH early so that they could monitor me. I sat in the hospital for 5 days before my surgery. I passed the time making earrings (as best I could with double vision).

My surgery had to be delayed by a day because of Columbus Day, which is a stupid holiday! When I was in college, I protested Columbus Day along with the Native American Student Association. We went to the homecoming game and held signs that said things like "Thanks for the yellow fever." I guess this was Columbus's way of getting me back!

Finally, surgery day arrived. They were able to remove 95% of the tumor. They replaced a 3 inch around piece of my skull with some kind of plastic compound. I have an 8 inch long incision on my head, but it actually looks better than I thought it would. Surprisingly, there was very little pain with this surgery. My head has hardly hurt at all. When I woke from surgery, my feet were on fire. Some kind of neuropathy set in and it was extremely painful. That went on for two days.

I lost a lot of blood in the surgery. They had to give me two units of blood during the procedure. The next day my blood counts were still low, so they gave me two more units of blood. As I watched the blood go in, I began to get warm and I had a pinkish glow to my skin. It made me think of True Blood. If only I could get some vampire blood... maybe it would heal me. After they gave me the blood, they said I could go home. James and I checked out of the hospital the next morning, and we went over to the family lodge for a day of respite before flying home.

Now I must do 10 days of radiation to zap the remaining 5% of the tumor. I'm still taking the steroids to control inflammation. I am extremely swollen from the steroids and they keep me up at night. I also have a pinched nerve in my shoulder that is making my right arm almost unusable. But that is the least of my worries...

All of this has been enough to deal with... but there are no breaks for me yet. When I got home, I developed pain in my abdomen. I asked for a CT scan. There are at least ten tumors in my liver, and two of them are over 5 cm. Really? Seriously? I cannot get a break??

So here I sit, in a sort of catch 22. The radiation on my head needs to be completed, and yet the rapidly growing disease in my liver needs to be addressed. And the pain and discomfort in my abdomen is a constant reminder of it all. Will I ever be back to myself again?