Multiple Myeloma

John Emerson is dead as a doornail. This must be distinctly understood or one could think he might see this posting and kill me in my sleep. A shoe box-sized box with his ashes in it resides in my parents' attic, directly above the kitchen, where a beautiful urn containing the ashes of Charlie the cat stands in a place of honor.

My brother was one of those guys who never fit in. He was taller than most, and for most of his life he weighed over three hundred pounds. He was something of a genious about computers, which stood him well during the seventies and eighties. The pinnacle of his career was during the Skylab and early Space Shuttle preparations, when he programmed for Bendix Corp. at Goddard Space Flight Center in Beltsville, MD. But when the computer age became routine stuff, his genious became obsolete. Bendix let him go during the "downsizing" era of the eighties. He was reduced to routine programming of routine computers, and he took too long trying to make everything perfect. Being a generally abrasive kind of guy, he had trouble keeping a job.

He had been going to therapists since his teen-age years, trying to straighten his kinked-up self out. Unfortunately, he wasn't really interested in fixing himself. He shopped around until he found therapists who were willing to take his money and tell him it was all his parents' fault. Therefore, all he had to do was to be angry at our parents and he was as happy as he wanted to be.

The final blow to his fragile employability came when the company in Washington where he worked decided to close that branch and retreat to the main office in Denver. They moved John and his wife out there and within a short time, went completely out of business. His standard depression became so much worse, and his willingness to help himself became so much less, that his patient and long-suffering second wife Rachel left him. This did not improve his mood. By the time this story began, John Gilbert Emerson's soul was so shriveled that he wouldn't even talk to his evil vicious parents more than once a month, and that was as unpleasant as he could possibly make it for them. These were my parents, too, and I never knew they were evil and vicious. Still don't.

All of that was to say that when, in late October of 2002, my parents couldn't get ahold of him and he wouldn't return their calls, it was some weeks before they were alarmed about it. At last they called Rachel, and asked her if she could find him. She did. He was in the hospital in Aurora, but the staff wouldn't tell her why. I invoked my powers, and within hours was on a bus to Aurora, Colorado.

Due to the nature of this blog, I feel compelled to describe some features of the trip out. I was very surprised to find that I had to show ID and there were itinerary dates and times on my tickets. I had to give them a date and time for my return trip as well, which they assured me I could change if I needed to. There was baggage screening and ID checking at every bus change. In short, it was a far cry from my bus trips of the seventies, when my ticket would get me there no matter who I was or how long I stayed at any junction point. I went by bus to avoid this kind of treatment. But at least it took longer than flying.

I changed buses in Mobile to a bus that went northwest to Shreveport (where the restrooms were being overhauled so they had big multi-hole portable restrooms outside) and Dallas, and changed there to go north to Denver. One more bus change got me to Aurora. I rolled my big blue bag inside the bus station and found the pay phone (remember those?) where I found the phone book, which had maps in the front which told me how to find the hospital. I walked the three or so miles to the hospital, asked about John Emerson, and found his room. It was empty - even the bed was gone. I asked at the nurses' station. They directed me to the dialysis unit. I left my bag in his room and headed for Dialysis. There he was, with tubes implanted in his chest, having a dialysis. He was pretty much out of it, but he recognized me. I told him I was there to find out what was going on. He seemed peeved that his privacy was being invaded. I went downstairs to the cafeteria for some lunch. That's where Rachel found me. She filled me on on what she had learned since three days before.

Erik, as his friends had called him since the late seventies (with his long, wild, flaming red hair and wild red beard he looked like a viking,) had been going to doctors for years about severe pain in his bones. Some said to take Tylenol. Some said to take calcium supplements. A couple of weeks ago, he had been referred to an oncologist, who took a look at the x rays and other tests and said, "Get thee to the hospital, do not pass go, do not collect 200 dollars." That's not really what he said. Turns out he had a rare cancer called Multiple Myeloma, a blood cancer that builds pockets of plasma in your bones and splits and cracks them. In addition, it clogs up your kidneys. Add all that to his ongoing insulin-dependant diabetes, and you have one severely fucked up individual. By the time the cancer was diagnosed, it was in stage three, and the average life expectancy for his situation was two years. Hmmm.

Rachel had his keys, which she bequeathed to me, and she took me to his apartment where I could hole up during my stay. She suggested I use his car, but when I tried to start it, the horn blasted and nothing else happened, no matter what I did. We returned to the hospital and found him back in his room. He got a wild look in his eye when we told him I was going to hang out in his apartment, but he calmed down enough to tell me that the car had an anti-theft system. One merely had to flick the lights on and off to make it startable. I was glad he was lucid enough to tell me that.

I soon found out why he was so worried about me staying at his place. It was filled to the gills with porn - magazines, videos, calendars, posters, paperback books, sex toys - probably a couple thousand items of pornographic merchandise, much of it devoted to S&M. I assured him I wasn't going to tell the parents about it. And during my off hours I spent a lot of time boxing up the visible stuff out in the living room and hiding it in the bedroom. He seemed to think he would be going home soon. Everybody else in the loop knew that this was not the case.

My "on" hours were spent talking to his doctors, nurses and friends and keeping a notebook filled with all the information I learned. I informed Carmen and my parents every step of the way, but left out the porn.

The Aurora South Hospital staff seemed to think that John would be better off at Aurora North where they had a program that featured co-ordinated care of multiple problems. It sounded like a good idea. I overstayed my return ticket by one day to see him transferred and settled in at Aurora North, got my ticket changed to the new itinerary and spent two days going home by way of Kansas, Missouri, Illinois and Tennessee. It made me happy to take a different route home.

My parents decided that they needed to go out there and take care of John's situation. On Thanksgiving Day they loaded up the car with their necessary items, including Charlie the cat (who was still alive) and began driving to Denver. They took the southernmost route as far as they could, trying to avoid snow and ice, then turned north through Albuquerque and Santa Fe, where they ran into a winter storm that held them up for a while. I believe it took them four days to make the trip.

It was evening rush hour when they hit Denver traffic, and they were completely lost. They pulled off the Interstate and called Rachel. She drove to where they were and led them to her house, where she cooked them a nice dinner and put them up for the night. The next morning she took them to the apartment and the hospital. They don't know what would have become of them if Rachel hadn't been there to rescue them.

They stayed until the middle of February. During that time the medical and insurance professionals decided that John needed to be in a nursing home. They relocated him to downtown Denver into a home with dialysis technology on the premises. Every day my parents drove from Aurora to downtown Denver to hang with John and monitor his care. I guess they ARE vicious and evil. Who knew?

Eventually it was decided (by the insurance professionals) that John could live on his own. The only problem: his apartment had many steps impeding wheelchair accessibility. My dad inquired about accessible apartments, but there were none vacant in the complex. He tried the next complex over. They had one. He rented it, made arrangements with a moving company, and they began packing up his stuff to move about a thousand yards west of where it was. My parents soon learned the extent of John's pornographic proclivities. My dad said to me, "I learned things about my son that I wish I didn't know."

They called at one point and told me that they had to go home soon and take care of some things in preparation for making their spring migration from Vero Beach, Florida to Blairsville, Georgia. Could I come to Colorado for a couple of weeks, just to get John set up and running in his new apartment? What could I say? On Valentine's Day I flew to Denver. I was picked up at the airport by Rachel, who took me to the new apartment and then went home. My parents were still there, car and cat loaded up and ready to depart. After a bit a van arrived with John in his wheelchair. We rolled him into his new place, with boxes piled to the ceiling everywhere, and our parents hauled ass for home. I was flabberghasted to hear my brother say, "There go the most wonderful people in the whole world." He soon forgot about that description.

If you'll remember my previous posting about lost luggage, you'll remember that my big blue rolling bag was at this time at a ski resort many miles away, in the posession of an idiot who didn't have the sense to read the claim check on my bag, which was identical to his bag. It would be almost two days before I saw my stuff again. Meanwhile, we muddled through as best we could. The worst of it was dialysis. We had to somehow get him transported from his apartment to the dialysis place about a half mile away. His little Corolla was practically useless. Getting him in and out of it was ridiculously difficult. If we called a cab company, they were as likely to send an impossible car as a van or SUV. I signed him up for the transit department program, but that would take many days to process and implement. As it turned out, on my last day of my two week stay, he was taken to the transit facility to be tested and processed. When I left on the 28th, he was all signed up to be picked up and taken to dialysis whenever he needed to go. In the meantime, Rachel traded us her Rav 4 to use on dialysis days.

There were many challenges during those two weeks. John had infections in his dialysis tube implantations, he had heart problems, we had a face-first spill out of the wheelchair onto the sidewalk. When I left, Rachel asked when I would be back to take him away. I didn't know.
The next big turn of events was the day his physical therapist came and couldn't get any answer at the door or when she called. Rachel came over and they found him on the toilet with not enough strength to get up. Within hours he was back in a nursing home, and Carmen and I were making plans to get him into a nursing home in Orlando.

In the middle of March I was back in Aurora. On Saint Patrick's Day the moving van came and hauled his stuff away. That same day I got a Notary to meet me and Rachel at the nursing home to notarize Powers Of Attorney so I could legally make arrangements for all of the medical and government stuff that needed to be cleared for him to arrive, take up residence in the Orlando nursing home, and get his dialysis. His Medicaid and Social Security Disability went straight to the nursing home and other medical entities. Carmen spent thousands of hours on the phone getting all of this set up. In April, my dad flew to Denver and shepherded John to the plane and on to Orlando. Our Colorado mess was over. Now we had the mess right there in Orlando.

I visited him pretty often. I went to his storage unit and retrieved whatever he wanted out of his huge heap of stuff. I bought whatever he needed that I couldn't find in his stuff. He made some friends in the home. Things were going well, I thought. But then, it turned out that John had withheld information about his finances. He had a "secret account" in Colorado he hadn't disclosed to the Medicaid people. They sent him a letter about it. He tried once to call the guy, but he wasn't there. Long story short, they stopped his Medicaid. Carmen was livid. After all the countless hours she spent getting it set up for him, his arrogance and laziness got it cancelled.
Luckily, he'd been courting a woman on an internet dating site. When his nursing home welcome was worn out, he moved in with her! They moved his stuff to a different storage unit, he put her name on his credit card, and made her his medical proxy. Suddenly, I was off the hook!

It was about six months later that he became so sick that he had to go into the hospital. He got gradually worse, spending a lot of the time in Intensive Care. His heart finally gave out on Thursday, August 12th, 2004, the day before Hurricane Charlie tore through Orlando, taking down 700 miles of power lines.

A year and ten months after this saga began, it was over. The internet girlfriend had possession of all of his crap and all of his debt. I went to the funeral home to collect his ashes, and that was the end of it. There were no tears and no memorial. He was just dead. He still is.