Spinal tap

I think I had five spinal taps, or lumbar punctures as they are officially called through the course of this illness. The first one was in Billings and I thought it was a big deal. They laid me on my stomach and had a gadget that could see through my skin so the doctor could get the needle in the right place. Once the needle was in my spinal column, they tipped me on my side so the juice could drip out. Afterward, they kept me in a recovery area for two hours before Dad could take me home. They were careful to make sure I knew to lay down flat for 24 hours to avoid the spinal headache, and if I did get the headache they told me to go to the emergency room.
“How will I know if it is a regular headache, or a spinal headache?”
“You will know, it will be an experience.”
The next one was less formal. Flobee did it in the clinic (this was the one where the fluid got lost). He had me lay on my side with my legs curled way up, numbed the area, stuck the needle in, drained the fluid and then lost the fluid. I don’t know what he did behind my back, but this was the most painful of all the spinal taps I had. It didn’t really hurt until the next day, but man my back was sore. The bottom part of my spinal cord hurt, bad. He must have really scraped that needle around in there.
The spinal tap procedure in the Mother Ship was similar to that of Flobee – I curled up on my side and the juice dripped out the spigot. Except for one time. They just couldn’t find the right spot. A few doctors tried several different positions. Curled up, curled up tighter, sitting on the bed leaning over a table, curled up on a board to keep my spine straight. “Just jam it in there,” I told them.
They gave up. A couple hours later a new doctor came down. He had me curl up on my side, but he had a secret weapon. “Put your arm over your head.” It worked. We now knew my white count was down. Yay!

Dad was there every day

My Dad was there in the hospital room with me every day. My Mom would have been there too, but she had not yet retired. It was probably better that she wasn’t there anyway because she was having a hard time with the situation. Being at work didn’t take her mind off of what was going on, but at least she was trying. I think the Xanax helped a little bit too, but she was in rough shape. I talked to her on the phone each day. And I talked to my brother, Peter, on the phone every day too.
Each day Dad would take me outside for some sun in my wheelchair. He sat in the shower room with me while I took a shower. We chatted. I was trying to do some knitting in the hospital, and everyday Dad would wind up my tangled balls of yarn because I was making such a mess of them. Each evening I would get to fill out the menu for the next day. You just circled what you wanted. I tried to get as much food as possible by circling one or more things in every possible category. It was quite fun. I could usually get enough food for both of us.

Cognition

On several occasions neurologists seemed surprised to see that I looked “so well.” If they saw my MRI before they saw me, they were astonished to find me not only conscious, but able to think, speak and sort of move around. I was told that I had “extensive” A.D.E.M. The lesions had affected a lot of my brain. One day I asked a doctor, “if my motor skills are so bad, why haven’t my cognitive abilities been affected?” Throughout this illness, I had not lost any ability to think clearly or recognize what was going on around me. The doctor said that people with a lot of education and high levels of mental functioning are better off with these types of diseases.
All those treacherous years of school must have created a lot of connections in my brain. If a lesion blocked a thought, it could take another route around. My mind seemed to stay the same as it ever was during my illness. I guess all those years of dragging my sorry carcass through school paid off in a most unusual way.

The Ambulatory Clinic

I was in C1, the rehab unit, for two weeks. Three days before I was released from the hospital, a second treatment was started, Solumedrol. This was a “mega-dose” of steroids designed to shut down my immune system so it would stop attacking my brain. I hate it when I attack my brain.
I started the Solumedrol on a Wednesday, I was kicked out of C1 on Friday because the insurance company said two weeks was enough, I didn’t need anymore rehab even though I still couldn’t walk. I was scared to leave the Mother Ship. Dad and I stayed at Mimi’s in San Jose, just about a 40 minute drive from Stanford.
I was to receive the last two days of Solumedrol treatment in the walk-in clinic. Dad took me in on Saturday for the treatment. I sat in the chair and knitted while the steroids flowed in through the IV. I noticed that the IV site was sore and getting a little infected. After the treatment, the nurse took my vital signs and Dad and I went back to Mimi’s.
Sunday was not as smooth as Saturday had been. My vital signs were taken before the treatment and my heart rate was slow, around 40 beats per minute. While on F3 and C1, my normal resting heart rate was around 70 to 80. I was given the Solumedrol, and my vitals were taken again. Still, a slow heart, quite slow. The nurse sent me over to the emergency department. As the transporter wheeled me out of the ambulatory clinic, I grabbed a turkey sandwich lunch off of a pile of them to eat on the way over. It was gone by the time we got there. After about an hour, I was given a bed in the E.D. The nurse put in a new IV, took blood, did an EKG, put an oxygen hose in my nose and asked for a clean catch urine sample. I asked the nurse if I was going into a coma. “No,” he laughed, “you would pass out first.” I asked him if I could keep the oxygen hose for my scrapbook. He let me. He also let me keep the stickers he put on my chest that attached to the heart rate monitor and the stickers he put on for the EKG.
Collecting a clean catch urine sample with severe ataxia is quite difficult. The nurse gave me the Kendall Precision Mid-Stream Urine Collector Kit. Dad helped me walk to the bathroom. Although I did manage pee into the container, there was also pee on the toilet seat, the floor and my hands. I was very careful not to spill the container before I got the lid on. I spilled a little, not bad. I cleaned myself up and dried off the specimen container and went back to my bed with Dad’s help.
The neurologists came down. The cardiologist came down. It was decided that I should be admitted again and hooked up to a heart monitor.

B2

They put me on B2, the heart monitoring ward. I was given another EKG and then I tried to sleep while I waited to be taken downstairs for a CAT scan of my chest. My heart rate was staying in the 40’s, although it got as low as 38 beats per minute. I felt weak and tired. The tests showed I was fine, my heart rate was just slow. Dad went back to Mimi’s.
Throughout the night, my roommate kept calling the nurse because she had to go to the bathroom really bad, but she couldn’t walk. The nursing assistant would come and say, “Honey, you are wearing a diaper!” in his Puerto Rican accent. She called him again later and had her diaper changed even though it didn’t need it. This happened over and over: I gotta go, you are wearing a diaper, change my diaper.
While I listened to the diaper drama behind the curtain, I was having a meltdown. I didn’t know it at the time, but steroids can cause fits of depression, and I was already prone to depression. “…it is a damp, drizzly November in my soul,” as Herman Melville says in his introduction to Moby Dick. That night, alone in the hospital, my soul was damp enough to grow mold, drizzly enough to wring out ponds filled with tadpoles and algae. What is the difference between lying in your death bed and thinking that you might be lying in your death bed?
The next morning, I woke up to Mom, Dad, and Jamie reading quietly the number on the heart rate machine. The night before Jamie had driven from Turlock to Auburn (two hours) to get Mom then together they drove to San Jose to Mimi’s (three hours). They arrived at the hospital early that morning. I told them what the doctors had said: possible brain biopsy, maybe stop taking the Lexapro (an antidepressant I had been taking for about two years). Mom thought stopping the Lexapro was a horrible idea, it was probably helping me through this whole experience.
About the brain biopsy, Jamie said they could give me the “old cranial screw-top.” I knew they were thinking of doing the brain biopsy because there was still a possibility that I had a brain tumor. A tumor could affect my heart rate.
This conversation took place about a month later:
Mom: “Well, did you discuss a brain transplant? I could give you mine.”
Me: “But what would you use?”
Mom: “Dead… or I could get a monkey brain, we could do a cranial screw-top.”
Dad: “I think monkey brains are small, maybe you could get two.”
Steve Martin in The Man with Two Brains: “To make brain transplantation possible, I’ve invented the cranial screw-top method of entering into the brain, whereby a large section can be unscrewed without having to shave the head. And I’ve also made it childproof. You push down while turning.”
Overnight, my heart rate came up a little. It was steadily increasing. We showed the cardiologist the Solumedrol info sheet that listed a slow heart rate as a side effect. He didn’t think that Solumedrol would affect heart rate. He said that we could attribute the heart rate to the Solumedrol and he would attribute it to my underlying condition. He sent us home.

Mimi’s

Back at Mimi’s, I was weak and tired. I attempted to walk around the block with the walker and Dad. I made it about half-way before Mom came and got me in the wheelchair. We were all a little nervous that I wasn’t in the hospital because I wasn’t in very good shape. Steven, Mimi’s husband, borrowed a heart rate monitor for sports. We checked my heart rate all the time. “63!” “Back down to 47.” “52.” It went up when I sat up or moved around.
We were confused about why my heart was so slow, but we could see how it was affecting me. I was moving in slow motion. My body felt heavy. I fell off the toilet in the middle of the night in slow motion. I tipped to the side and put my hand down to catch my balance. I sat, pajamas around my ankles, bent to the side with one hand on the floor unable to recover. I stayed this way for a few moments trying to recover, I crumbled to the floor. Dad heard me fall. He came in to get me up. “I’m not looking,” he said. “I DON’T CARE.” He almost had to carry me back to bed.
The next morning, I laid on the couch after struggling out of bed. Mom and Mimi went grocery shopping for dinner. While they were gone, I was falling asleep and waking up, I was very weak. When they got back I told them that I couldn’t tell if I had been falling asleep or passing out. “I think you better take her in,” Mimi said.