Saturday, September 25, 2010

Rough Night

Last night was difficult; maybe the worst night so far.

In December of 2002 I had to go see the lung specialists at the hospital because of a bad infection in my lung. I had been sick for months, and by this time I was really sick. I was less than a month away from my 54th birthday at the time. With heavy doses of antibiotics they were eventually able to cure the lung infection, but sort of accidentally the various blood tests they did also happened to show that I had a chronic disease. Chronic Lymphocytic Leukemia (CLL).

CLL is a form of malignant cancer. In simple terms what happens is that the white blood cells, which normally fight off disease and invaders, become cancerous. This means that they forget when to die; they keep on living, even though they are defective and are no longer able to fight off infections (immunodeficiency). The lymph nodes swell up, and so do the spleen and the liver.

It is often a slow progressing disease, and in my case it has been. It now has been almost eight years since I was first diagnosed with CLL. The defective white blood cells have continued their cancerous growth so much so that they have now started seriously crowding out the platelets, which help the blood clot or form scabs. The same with the red blood cells and their hemoglobin, which carries oxygen around to the various tissues in the body. At the moment this is the most serious problem.

The weakened immune system has made tooth decay much more of a challenge, and even with better than ever personal hygiene jock itch is now chronic.

The lack of red blood cells and hemoglobin mean that if I walk really really slowly I can go maybe 20 or 30 feet before I have to stop and rest. It is a constant battle to make sure that I don't do any exercise which will so reduce the amount of oxygen getting to other important organs (like the heart) that I develop major problems. To get out and walk the doggie I have bought one of those old geezer handicapped scooters. It is wonderful. I nod off a lot during the day, so driving a car safely is becoming challenging. I still do it, but I'm now driving much more slowly; like an old old man.

The lymph nodes have now swollen up quite large, especially under my arm pits, on my neck, and to a lesser degree in the groin area. The gigantic ones under my arms now are often really quite painful. They are a major impediment to sleep. I have grown a beard and have let my hair grow kind of long hoping to hide or at least camouflage all these bumps. A fellow CLL patient who is really smart and well informed says that these are lymphomas, but I couldn't guarantee this is the right word to use.

The CLL progressed slowly for many years, but now these various symptoms and problems have all begun getting worse rather fast. The process seems to be accelerating.

I am almost 62 now; it was roughly eight years ago when I was first diagnosed with leukemia. I feel like I am nearing the end stage of this fight with CLL. Lets rephrase that more openly and honestly. I'm pretty sure that I will die sometime in the near future because of this malignant cancer. Maybe an infection and pneumonia during the next year or so due to the immunodeficiency, or maybe tonight or next week from a heart attack.

Around midnight I began sleeping fitfully. This has become quite common. But tonight it was the worst so far. The low levels of hemoglobin mean that breathing slowly and deeply has become critical. What happened from midnight to about 3:00 a.m. is that every time I would start to fall back to sleep, my body would just stop breathing first. So I felt like I was suffocating as I fell into sleep. Only conscious waking thought would keep the lungs doing their job breathing in and out.

During this time I gave a lot of thought to how one dies peacefully and fearlessly. Suffocation is not a good way to die. I thought back over the various people I have known who got lucky and died quickly.

I am ready to go, no, I am ready to die. I accept that this malignant cancer has just about won the battle. But I also like living. For the most part I am still enjoying life. So I am in no hurry to end it either.

Around 3:00 a.m. I got up. I went to my bookshelves and found “On Death and Dying” by Elisabeth Kubler-Ross, M.D.- Also “The Peaceful Pill Handbook” published by Exit International US. My goal is to do a little reading and research to see if there are tricks or tools that the dying person can use. I am not afraid of being dead; I am a bit afraid of the process of getting from here to there. Especially if it involves suffocation, and extreme fear and anxiety at the very end.

When I moved back to America (I had lived in Europe for many years) I immediately became both uninsured and uninsurable. This isn't as big a problem as it sounds like, because CLL is incurable. Even for the insured or for rich people.

I decided that the one insurance policy I could buy would be a powerful hand gun. So I got my license to carry a concealed handgun, and I bought various pistols which were powerful enough to blow one's brains out. A .44 magnum, a .40 caliber semi automatic, and a .38 special + P. With this much firepower to the brain, death would likely be very rapid indeed. These and almost all of my other handguns including a .380 Ruger LCP have laser sights on them just in case I should need them for self protection rather than self destruction. The only handgun I own which does not have laser sights is my .38 special/.32 magnum derringer.

In the last few months I have made sure that the dog's dry food bowl always remains full with a several day supply of food. And I now have two water bowls; one is a high capacity. I even have begun leaving the sliding glass door to the patio unlocked when I am inside the house. My thought process is that surely within about two or three days my sister would notice that I am no longer posting to Facebook, Flickr, my blog, or Twitter. Hopefully she would become concerned, and try to call me. Next my guess is that she would get her husband, my brother in law, to drive over and check on me. They have agreed to take my wonderful and loving dog if “something should happen to me.”

Lying there in bed earlier tonight, trying not to suffocate, I couldn't help thinking about the loaded .44 magnum sitting in the bedstead a couple of feet away. Since my relatives will inherit this house (it is fully paid for), I don't want to make a big smelly mess of blood, bits of skull, and splattered brain all over the bedroom. If I do eventually take this route out, I certainly will need to be out in the backyard when I blow my brains out. If I could find a way, perhaps in the nearby desert.

But back to the subject at hand. Are there things that a terminally ill person can do to die gracefully? I think the word happily is wrong, but I'll bet you see what I am thinking. If it is inevitable, then as good a death as possible.

Both my Mother and my maternal Grandmother were hospitalized when they died. In the days before the final end both ladies realized that they didn't want any part of dying in an authoritarian hospital environment with all sorts of tubes hooked up to them. They tried to pull their various IV tubes out, so the medical staff tied their arms and legs to the metal hospital bed to keep them from escaping! This is barbaric in the worst way. What a terrible way to die – tied down and imprisoned. These are not good examples of the right way to die.

It is now 5:55 a.m., and I am exhausted from lack of sleep. The two books I have address other parts of the dying process, so I will keep searching. Maybe on the internet. Peaceful death. I don't know the phrases I will start out with on the search engines.

If you were completely deluded and believed in talking snakes and burning bushes you could use your Christian religious upbringing to help comfort you when dying. But I am not stupid, and I am not delusional. This is one sick and harmful religion. So we will see if I can find anything at all which will help provide comfort during the dying process.

In the meantime, from 3:00 a.m. to 6:11 a.m. I have been quite gassy. Fortunately one of the results of my bad health is that I have totally, completely lost all sense of smell. I have also taken three very sizable bowel movements. Perhaps my abdomen was just so full that there was inadequate room for the lungs and heart to do their jobs properly. I don't believe it, but it is one theory.

It is Saturday morning now, and after I make the bed, brush my teeth, shower, etc. I plan to take the dog and go down to the flea market in Socorro, Texas.


If you Google “dying with dignity” you get all sorts of hits talking mostly about revising legislation to let physicians help terminally ill patients with the suicide process. Medscape says “Most aging adults will become physically dependent on others before they die, but does this mean they are destined to die without dignity?” So a way for the docs to develop more paying business, but not necessarily what the patient wants or what I am searching for.

I certainly do not intend to get to the point where I am dependent upon others before I die. If my physical or mental state deteriorates to where I can no longer live alone in my own home with my loving doggie, then that would be a good indicator that the time has come to go ahead and do the “dying with dignity” routine.

Maybe there is no such thing as what I am searching for. Looking back over human history we know a little about the death and burial rituals of the Americans who were living here 1,000 to 2,000 years ago (i.e., American Indians). Same with the Romans 2,000 years ago and the Egyptians 5,000 years ago. Stonehenge, the pyramids at Giza, the Jews many thousands of years ago, the death rituals of the Aztecs, the Celtic bog people, etc. Most of these groups had strong rituals and taboos regarding death. Many involved big send offs to help the dead guy arrive successfully at the next place.

For the most part these are all the kinds of myths that may have worked well for illiterate and uneducated people. But these sorts of spiritualistic rituals involving power hungry religious leaders, shamans, and/or doctors is not at all what I am hunting for.

I guess I am trying to find some sort of a tool that one old and pretty worn out, but well educated, man can use to assist him in battling anxiety and fear when the critical time comes. When you are lying there struggling for breath, it is pretty clear that death is today's specialty on the menu, and your hand is solidly on the hospice opiate button or on the .44 magnum trigger.

Just the process of writing all this down and trying to define what I am looking for gives me the answer. There is no magic answer.

Strength of character, humility, and a thankful attitude for having been fortunate enough to have lived a great and amazing life... These are the things that will get one through the crunch with as much grace and dignity as is possible.

Perhaps there is some sort of life after death. Probably not, but who knows? Either way the answer is not far away now so there isn't much point in worrying about it.