I’m having a little trouble trying to learn how to die. It’s really not as easy as it may sound from a distance. Just what is one supposed to do, how is one supposed to act, what things should one say who knows that they are dying and all the medical professionals around him confirm that belief. I’ve had visits from a nurse that enrolled me in hospice as an outpatient. She asked about a million questions and took my vital signs. She gave me no direction nor clues into what may be to follow. I guess I’m on my own as to how to handle my own death. It’s truly a very strange place to be. I don’t like it here. Even if I had a time machine, I’m not sure if I’d go backward or forward in time. I do know that I wouldn’t want to go through all this again and at this very moment… forward in time sounds pretty soothing… though a little bit of quality time with my children before I reach the point where quality is no longer an issue would truly be a wonderful thing.
A couple of days after the nurse visit, I was visited by a minister and a social worker. That was an unusual visit. Uncomfortable so to speak… it seems more uncomfortable for them than for me. In my registration, I told them that I wasn’t into religion as such, but that I was a firm believer and that I was deep into the spirituality aspect of all that our beautiful universe so freely offers to us. There was a very long, uncomfortable time of complete silence, while both of my visitors were looking off into space nodding their heads in the affirmative as if either agreeing with me… very confused by my comment… or agreeing with one another that I was totally insane and should be locked up somewhere. Whatever their thoughts… neither of them expressed them to me. The minister prayed for me anyway… sort of… it was more of a save the world prayer and about the coronavirus than anything else. I appreciated it anyway. Prayer never hurts. I said I wasn’t into religion… I didn’t say that I never prayed.
I guess the one thing that came from the hour long visit that was maybe a bit important was this… the social worker asked if I had a plan for when things get worse. I told her I did not. I told her that if I was able to find homes for my many rescue cats, that my daughter and her husband had graciously offered to move me in with them in Kansas City while trying to help find homes for God’s little voiceless creatures that reside here with me. I think that would be a very good idea… at least for me… can’t speak for my daughter and her husband. There are so many unpleasant circumstances living with someone you care deeply about, who you know is dying. As for my plan… I told the social worker I had no plan because I don’t know what is available to me. Evidently she didn’t know either because she had nothing to offer beyond what I told her.
A few days after that I was visited by the nurse that will be my regular nurse and he was accompanied by a second nurse… I suppose training or something. He asked another million questions, many the same I had already been asked… took my vitals… talked to me about pain meds because I don’t like taking them and not being mentally alert when I do, especially while living alone. He told me to cut one of them in half and try that. I told him that I didn’t think you were supposed to cut extended release tabs in half and he assured me that it was alright and the nurse with him agreed. They said that cutting them was fine… just don’t crush them up.
A few minutes after they left, I cut one of the tabs in half and didn’t like the way the powder inside was falling out of the coated outside. I didn’t take it. I Googled it instead… and on nearly every site I checked… it said DO NOT CUT, CRUSH, OR CHIP. So I called the hospice number and asked to speak to a different nurse. They connected me with the nurse manager and she said that she would check it out and call me back. She checked it out, called me… and said DO NOT CUT those pills and that she would inform my nurse. I suppose he might be a little disturbed by my questioning his expertise… however… those web sites also said that taking the pills cut or crushed may cause fatal respiratory depression. I don’t think I need that in this moment. He also told me to stop taking my cholesterol meds and my thyroid meds. What? Is this guy trying to kill me off before the cancer gets its chance? I don’t know about stopping the cholesterol meds but stopping the thyroid meds would put me right back into all the symptoms of hypothyroidism that I was experiencing before the doc found the problem. I’m weak enough without adding those symptoms back into the situation. Does this nurse want me to be more miserable than I already am? Does this nurse even know what the hell he’s doing? He came back yesterday and apologized for the pill caper. He was also an hour and a half late for our scheduled appointment. He first acted like he didn’t know he was supposed to be here at 9am. Then he said that he got tied up on a conference call that lasted too long. Excuses, excuses. I don’t think Hospice and I are getting off on the right foot.
My symptoms are basically the same as my earlier post except they continue to worsen a bit each day… especially the pain and recently… the coughing up of blood. To be a bit more descriptive here… I can feel it when the blood begins to gather in my throat. I can taste it in my mouth and my lips get slightly sticky. I can’t always cough it up… but I’m nearly always aware that it is happening. I’m sure you’re not going to find too many patients suffering from cancer… writing about their experiences… that are willing to describe in such detail certain symptoms that sometimes accompany cancer… at least lung cancer. Some of you probably wish that I would not be so descriptive either… but, as I said from the beginning of this journal… I will tell it like it is and if you don’t want to read it or know about it… well… “Don’t”.
Wednesday morning when I got out of bed to start my day, the right side of my chest felt a lot of pressure. When I tried to breathe deeply, it felt as though my lung was too full to allow any air to fill it. It’s a very tight, heavy feeling… kind of like carrying around a sand bag in my lung. I’m guessing that more of the semi collapsed lobes have collapsed even further, or the tumors are cutting off the air or perhaps… that lung is filling up with fluid. No way to know at this point.
I know that many of you who read this journal have experienced great pain in one form or another. Those who have been fortunate enough to have avoided that aspect of life would not understand just how debilitating severe pain can be. I can’t do anything for more than 5 to 10 minutes without sitting down or lying down to try to relieve the pain before attempting to finish what I started… (picking up and putting away things, laundry, dusting, taking care of kitties… attempting to prepare food… just about anything that makes me bend or stoop or stand for very long). I can only sit in this chair and type for a few minutes at a time because of the severe pain caused by the tumors gnawing into my rib cage. Trust me here… it is excruciatingly painful.
The VA called on Tuesday and told me to come in for blood work. I’m not sure why all of a sudden they want to do blood work unless they have to do it to complete my over the phone yearly exam. I didn’t question it. Anyway… I’m glad that they are checking it… I’m a curious person. The results came in and the VA doc said that… other than having very low blood counts… a severe lower abdomen hernia and dying of cancer… I’m healthy as a bear.
So in the meantime I’ll be hobbling along attempting to learn how to die. I guess it would be hard to find someone with experience of that to help steer me in the right direction, but should any of you have some pointers on the subject… I’m open to suggestions. Maybe I’ll visit the library and ask the person at the information desk if they have any ‘how to’ books on dying… Hmm… or maybe I shouldn’t.
Until next time… I’ll be wishing you all a beautiful day and exceptionally good health.