My husband passed away on September 4, 1997. He can't tell his story, but it deserves to be told.
I suppose the first incident occurred about 15 years ago. He could have told you. I'm not good with dates. He began having double vision and dizziness. It didn't get any better, so he went to our doctor. The doctor said it was an inner ear problem and sent him to an ear, nose, and throat doctor.
The ENT did a whole bunch of tests and said there was nothing wrong with his ears but there was something wrong with the part of his brain that controls the inner ear. He sent him to a neurologist. The neurologist did a CT scan and said there was nothing wrong with his brain. He told him to go back to the ENT. Francis was disgusted. We had wasted a lot of time and money already. Besides the double vision and dizziness had cleared up. He didn't go back to the doctor.
A couple of years later, he had a tooth pulled. I'm not very good at dates, but I remember that it was Mardi Gras weekend because I get two days off for Mardi Gras. He was always a terrible patient, demanding and impatient. I knew he would lay up in the bed and bug me to bring him things, but he didn't. I was sewing a blazer and I got the whole thing done with no interruptions. I thought it was heaven. I thought he had gotten over being a pain. I should have known something was wrong.
When I went back to school on Wednesday, he said he still felt bad. I left him in bed and went on. I called him at lunch time and woke him up He said he was okay but still feeling bad. When I got home that afternoon, he had thrown up in the bed. He had wet the bed, too. He could not focus his eyes. They just kept rolling around in his head. He tried to respond to my questions, but he didn't make sense. I put him in the car and took him to the doctor.
He threw up in the doctor's office. The doctor said he must be nervous about being there. Nervous! He didn't even know where he was! How could he be nervous? So the doctor but him in the hospital and put a drip in his arm. No medicine, just sugar water. Three days later, he woke up. The doctor released him from the hospital. I asked the doctor what was wrong with him. He said Francis had a "touch of encephalitis." He never went back to that doctor, either.
The next incident happened after a few more years. He had a rip-roaring headache. He did everything he could think of with no relief. He went to the doctor who said he had a sinus infection and gave him decongestants and antibiotics. Francis took them faithfully. Still no relief. He went back to the doctor. By this time, his headache was so bad that I had to drive him. The doctor sent him for x-rays and blood work. We waited for the results to take back to the doctor. I looked at the results before we gave them to the doctor. The results said everything was normal. The doctor again said it was a sinus infection and gave him a different kind of antibiotic.
He only got worse. I called the doctor's office again. The nurse said, "Does he REALLY need to see him again?" I assured her that he did and immediately called my HMO and said I wanted another doctor. They said to take Francis back to this one and if he didn't do anything this time, they would let him see someone else.
The doctor gave him a referral to a neurologist to "rule out encephalitis." I've figured out that when ever you have something wrong with your head and they don't know what it is, they call it encephalitis.
The neurologist put him in the hospital. He said Francis had spinal meningitis. After Francis was settled in, I left the hospital to make arrangements for my kids. By the time I got home, the phone was ringing. It was a nurse at the hospital. She told me that Francis had an aneurysm and that he was in intensive care. I thought I would faint. My friend's husband had died during aneurysm surgery the year before.
I went back to the hospital and met with the neurologist that they had called in. Dr. Clifford. The only one that deserved to be called a doctor. He would do an arteriogram to get a good look at the aneurysm.
After the arteriogram was over, I met with Dr. Clifford again. Francis didn't have an aneurysm, he had an arterio-venous malformation. As a matter of fact, he had two. One had bleed and that is what had caused the problems. I asked how much it had bled, and Dr. Clifford said probably a couple of heartbeats.
I'd never heard of an AVM before. Now I was hearing that my husband had two of them. One was on the surface of the cerebellum. It was operable. The other was imbedded in the brain stem and was inoperable.
I didn't think he would live through the surgery. The only other person I knew that had had brain surgery had died during the operation. Francis was ready to get it over with. So he forged on.
The took him to the operating room about 5:30 a.m. The stayed in there all day. The doctor came out about 5:30 p.m. and said that they couldn't finish that day. He was too much. They would have to finish the surgery another day. A two-step operation, he called it.
They sent him to intensive care for a few days and then to a hospital room. His pillow was soaking wet. Spinal fluid. I told the nurse and she changed the pillow case. A few minutes later it was soaking wet again. I told her the bandage needed to be changed. She said she couldn't do that. I said give me the bandage and I'll change it. She called the doctor. The physician's assistant came and put some more stitches in his head.
Francis couldn't eat anything. Every time he sneezed, he threw up and he sneezed repeatedly. He couldn't stand the light and he couldn't stand any noise. His head hurt so they gave him Tylenol.
The HMO said he couldn't stay in the hospital until his next surgery--too expensive. So he went home. A week later, he went back to the hospital and had a second brain surgery.
After that one he was a total invalid. He couldn't stand up; he couldn't sit up; he couldn't walk; he couldn't even crawl. He didn't want to stand in the bedroom, so he laid on a pallet on the living room floor. The only thing he could eat was chicken broth. He looked like a refugee--skinny with a swollen head.
He needed physical therapy, but he couldn't ride in a car, so the therapist came to our house three days a week. The HMO would only pay for her to come for three months. She was great. She made a plan for us to follow after she left. Francis worked hard at getting better and he did get better, although he would never be able to work again.
Dr. Clifford did another arteriogram. The one he removed was fine. He decided to give Francis radiation treatments for the other one. That was before the time of the gamma knife. Francis took thirty days of radiation treatments, just like the cancer patients get.
Over time Francis got healthier. We would walk around the block every evening for a little exercise. Five years ago today, Francis and I went for a walk. As we walked, he said, "That thing in my head just popped."
At first he didn't want to go to the doctor, but about an hour later he knew it wasn't getting any better. I took him to the emergency room. I told the triage nurse that he had an AVM. "How long has he had it," she said. Some nurse. "All his life," I said. Big mistake. He had to wait for hours.
I told the emergency room doctor that he had an AVM. The doctor did a CT scan. "No bleeding," he said. He decided to do a spinal tap. "Are you looking for blood?" I asked. After all, that's how they found this thing the first time--blood in the spinal fluid. "No. I'm looking for fungus," he said. Yeh, right. He was walking around the block and the fungus just grabbed him.
He found blood. After six hours in the emergency room, they called the neurosurgeon. "The AVM is bleeding," he said. I asked him how he knew. He saw it on the CT scan. So Francis had brain surgery again.
When I think about it know, I'm not sure why. This was the inoperable one. "The bleed did most of the work for me," Dr. Clifford said after the surgery. I don't know why, but I thought that meant it was no longer a threat. Dr. Clifford never did another arteriogram. "Why not?" I asked Francis. "Because there's nothing else he can do about it," Francis said. I dismissed it. There was nothing else that needed to be done, I thought. He was cured.
For the past five years, he got better. Our daughter got married in November of 1996, and Francis walked her down the aisle. It was great. We celebrated our twenty-fifth wedding anniversary on August 26, 1997. He sent me twenty-five yellow roses--my favorite. I was ecstatic! A week later he was dead.
He was fine when I went to work on the 3rd of September. As a matter of fact, he was fussing about something "some stupid woman" had done. I was irritated. His friend Ronnie came to pick him up that afternoon. Francis was laying on the couch. Ronnie thought he was asleep, but he couldn't wake him up. He called 911. And then he called me.
I knew when I saw him. The paramedics had laid him on the floor and were working on him. "Did he take any drugs?" they asked. I told them about the AVM. I rode in the front of the ambulance. I thought we would never get there. Why were we going so slow? I could have driven faster.
They took us to a private waiting room. I knew that was a bad sign. The emergency room doctor asked about drugs, and I told him about the AVM. He did a CT scan and when he came back he had a terrible look on his face--scared like. "It's a bleed, a really big bleed. I called Dr. Clifford." Dr. Clifford just shook his head. Nothing he could do. We could see him, say good-by.
The paramedics had put him on a respirator. It was keeping him alive. We had to make the decision to take him off. Organ bank people came asking for organ donations. My son said he had been cut on enough.
They took him off life support on the fourth. We had to leave the room but we could go back in when he was off. The organ bank people came back and asked for corneas.
He lived about 30 minutes after they took him off. My daughter and son-in-law, my son and his girlfriend were there with me. And my brother-in-law. Who invited him? "Don't fight it, Francis," he said. "Give it up to the Lord." I still hate him for that, for being there. The last thing I wanted Francis to do was to give up.
I thought I couldn't get through it. The hospital, the funeral. I'm a strong person, but I didn't think I could do it. I know now that that was the easy part because it was finite. It had an end. What I have know has no end.
I miss you.
Author no longer active March 18, 2011