The Mother Ship

Stanford called. They received the corrected referral and gave us an appointment the following week in the outpatient neurology clinic with Dr. Jiminy Cricket, a resident.
Stanford is a fancy hospital on a fancy campus; they have a linear accelerator. Cool. They have computers in the waiting rooms so you can check your email or look up stuff on the internet. I call Stanford the Mother Ship because it is big, safe and sheltering. It is also where I go for a good probing.
Our appointment was August 22nd, about four months after I first got sick. Dr. Jiminy Cricket did the neurological exam, asked a lot of questions, and then got Dr. Yesno, his attending doctor. Dr. Yesno did parts of the neurological exam too. Jiminy said I probably had something rare, or a rare version of something common. Months later, Jiminy told me that he thought my condition had been “scary” when we first met that day. They admitted me to the hospital right then. By the time it was over and done with, I would be there for three weeks.
Mom, Dad and Mimi (she came too) were so relieved to get me admitted. Mom had tears in her eyes. As I bounced around in my happy little state of mind, I noticed the three of them in a tight little cluster, thankful, relieved, and nearly speechless. But at the same time anxious. Admission to Stanford was proof that something was very wrong. One of Mom’s friends had her church group pray that I would be admitted to Stanford. It must have worked. I felt excitement. Not so much about the potential for getting better, but because Stanford was a new place, remember I had been lying on the couch for four months. I had a touch of cabin fever and this place was new and exciting, I was happy. Everyone had been so worried about me, except me. Dr. Yesno said that the brain is an amazing organ with an incredible power to heal. He also said that they would take care of me until I was better. Those were powerful things to hear, especially for my Mom. After so many months of no help, someone was finally paying attention to us.
While we did the admission paperwork I had Mom call my boss in Miles City to tell him “I really am sick,” and let my work know what was going on. In a way, I was relieved to find out that I really had something wrong with me, maybe more than an “inflammatory process.” I had felt like a charlatan up to that time.


F3

F3 was the ward I was admitted to at Stanford. It is the ward for neurological disorders. The first room I stayed in was an epilepsy room. It was a room with a camera pointed at the one bed in the room. Mom said not to pick my nose. I settled into the hospital room with my family. I lay on the hospital bed and waited to find out what I was supposed to do. The nurse came and asked questions and took my vital signs.
Eventually, Dr. Handsome, a resident, came into our room. He had spent the last two hours reading through the medical records that Mom prepared summarizing the events of the last several months. He did the neurological exam and asked a lot of questions.
I had heard that doctors could have a nice bedside manner, but I had never experienced it, that is until I met Dr. Handsome. Talking to him was like talking to a friend. He patiently answered all of our questions and asked if we had more questions. This was the exact opposite of what we had previously experienced.
At Stanford, all of the resident doctors are young, attractive, smart and seem like they come from wealthy families. At the time I didn’t consider what a mess I must have appeared to be. I felt fine. I was a jolly and cooperative patient. I couldn’t help myself; I flirted with the cute doctors. In retrospect, this was ridiculous. I couldn’t walk, my speaking was terribly slurred, my hands crashed around, and I fell over when I sat up in bed, not to mention that nobody knew what was wrong with me and whether or not I would recover. What a catch. I didn’t care, I was having fun, and I was enjoying being in a new environment with new people.
I was receiving so much attention and I loved it. Normally I don’t deliberately draw attention to myself, but in the Mother Ship I was naturally the center of attention, I was the patient. I felt like a celebrity, so many people were fussing over me and asking me questions and telling me what I needed to do and they were concerned about me. It wasn’t like everyday life where no one pays attention to you or what you are doing.
I enjoyed chatting with the nurses, nursing assistants, transporters, and the people who brought meals or cleaned the room or took my blood. Everyone was nice, and they came from all over the world. This was a refreshing change from Miles City where most everyone is boring old white, like me. At one point, I overheard a roommate say a racist comment to her visitor. I was shocked. I couldn’t care less what color you are. I couldn’t care less about your religion. I couldn’t care less about your sexual preference. THANK YOU FOR HELPING ME!
Mom and Dad left to stay the night at Mimi’s house in San Jose. I lay in the hospital bed waiting to be taken down to the basement for a CAT scan, then a MRI. Blood was taken. In the hospital your body becomes public property. You just have to accept it, ask all the questions you want, but your body is not yours anymore. You are not able to make the best decisions for yourself, so the doctors do it. You are not able to care for yourself, so the nurses do it.
The next day, Dr. Handsome did a spinal tap. I lay in the bed and visited with my family. I was moved to a different room because an epilepsy patient came in. It was a double room. I named my roommate “Ole Stroky.” She had had a stroke and was very hard of hearing. When she pressed the “nurse call” button, she couldn’t hear the nurse speaking through the caller and asking what she needed. She just waited, and if the nurse didn’t come soon enough for her, she would start yelling. “NURSE.” “DIAPER!” “NURSE!” “DIAPER!” “DIAPER!” Sometimes I called the nurse for her. It worked out well because she was hard of hearing and I couldn’t talk quietly. She didn’t sleep much. Neither did I.
On my third day in the hospital, the attending doctor and the residents and interns made their rounds. When they came to see me, they had a diagnosis.

Houston, We Have a Diagnosis

The attending doctor said they thought it was A.D.E.M. Acute disseminated encephalomyelitis. “Never heard of it.” They said they were about 50% sure of their diagnosis. Sounds fancy. It is a rare neurological disease.
Here’s what they think happened. I got a virus, nobody knows which and will probably never know. It could have been anything. This virus stood on my blood-brain barrier and called out, “Hello Brain!” It echoed back, “Hello Brain! Hello Brain! Hello Brain! Hello Brain! Hello Brain! It crossed the blood-brain barrier and entered my brain “like a lock and key,” as Dr. Handsome explained.
Then, my immune system attacked my brain as it tried to get rid of the virus in there. This attack on my brain caused inflammation and lesions. The assault stripped myelin off of the nerves in there. Myelin is the coating on the nerves, like the plastic coating on a wire. The myelin is like an insulator that helps carry messages smoothly from the brain to the body. My body was not receiving the messages sent by my brain in a timely manner, so my coordination and motor functions were not smooth, to say the least.
A.D.E.M. is an autoimmune disease. It is related to multiple sclerosis, the two diseases are on a continuum. MS is a disease with recurrent “attacks” where new lesions are formed and symptoms are agitated. The brain can become scarred from old lesions. A.D.E.M. is mono-phasic. It is like one bad attack of MS with the formation of lesions and intense symptoms, but it only happens once, hopefully. There are also bi-phasic and poly-phasic A.D.E.M. where new lesions can form and symptoms reappear, but the diseases are not considered MS. It was thought that I had A.D.E.M., but only time can tell. It could be years before another attack.
In the days following my diagnosis, Mom did some internet research. She found that A.D.E.M. is quite rare, in fact it wasn’t even on the national rare diseases registry. We discovered that compared to other A.D.E.M. patients, my attack had not been so bad. Most people’s symptoms come on fast, in a matter of hours or days. Sometimes they go into a coma. Since they are hospitalized quickly, they are treated quickly and often recover in days to weeks.
This did not happen in my case. My symptoms built gradually over about four months before I was hospitalized. My body had a lot of time to damage my brain.
Dr. Handsome said they decided to treat me right away with something called IVIg.

IVIg

Intravenous immunoglobulin. I received this treatment each day for five days. Peetie and I talked every day on the phone. We referred it as “Intravenous DeMilo” from the album title in the movie This is Spinal Tap.
IVIg is the pooled blood plasma (antibodies) from 20,000 people. The immune system uses antibodies to fight intruders – viruses and bacteria. IVIg is intended to reboot the immune system, in my case it was supposed to stop my immune system from attacking my brain. To me it was a glass jar of clear fluid that looked to be the consistency of syrup and there were bubbles on the top as it slowly dripped into the IV. I found it comforting and haunting to have the helpful juices of 20,000 people in my veins. I thought that if I had all those people’s antibodies that I must be invincible. It costs about $10,000 per jar. I was given five jars in five days.
Early each morning of the treatment, the mosquitoes came. I called them mosquitoes because they sucked blood. They took a lot of blood. One morning the mosquito said she needed blood for 22 tests. “22 tests, does that mean 22 tubes of blood,” I asked. She said she was going to check. When she came back, she said she only needed to take 12 tubes of blood for the 22 tests. “How many is the most tubes you’ve taken for tests at one time?” I asked. “12,” she said, “you are tied.” One doctor told me I was a bit anemic, gee, I wonder why.
Each morning during the IVIg treatment, Dr. Handsome came to my room and gave me a brief neurological exam to check for improvement. There was no noticeable improvement. He asked more questions and told me the results of the tests from the previous day. One morning he told me that the CAT scan showed that I had polycystic ovaries. “Oh.” I didn’t really care. I had bigger problems at that time. Since they weren’t sure of the diagnosis, they investigated anything they could find wrong. Dr. Handsome said they were sending me to the basement for a pelvic sonogram. “That’s fine. Whatever you think.”