This may just be a kind of stream of consciousness kind of post and make little sense. I do not make much sense lately and the chaos of my mind grows daily. From what I read (and I have read a lot about brain cancer over the last 5 months, if you know me at all you know it is pretty much the biggest duck I have ever had in my life.) This chaos and confusion is pretty much par for the course, and I am not surprised that 6 months in I would be questioning everything I think, do and say.
Steadily losing control of my emotions makes me feel like a raving lunatic on some days. Since I have been known as kind of a volatile person all my life, (Ah…the redheaded stereotype follows you from birth, but in my case, unfortunately, mostly fitting.) but this kind of volatility is different to me, instead of the pretty firework that goes boom and scares the hell out of you then gives you a pretty show for a while, and a few ooooohs and ahhhhhhs, I am the box of whistling chasers that accidentally got set on fire that sends everyone running and jumping and fleeing for their lives. This is why my prayer is for peace. Let my mind be at peace.
Once, years ago, I was meditating by a pond and my eyes were closed, and at the end of the meditation I opened them to a completely mirror-like pond, with one lone duck swimming gently across in front of me, barely making a mark on the water. My thought was: Yes, it looks tranquil, but he is paddling like mad underneath. This is the way I feel most days. Tranquil to those around me, but pandemonium within.
There is so much that adds to this constant confusion besides the fact that the tumors are now invading the space in my brain that controls such things, so many outside influences that I have no control over, and there is the unfortunate reality that because of what is going on inside I must give up more and more control of my life to other people on the outside. This, to a woman who for years has loved her silence and solitude. Independent and intelligent and oh so intolerant of the idiots of the world. Highest on my list of pet peeves is incompetence and injustice. They sometimes are seen side by side. There is also the trust issue. I have been screaming at people for 3 years about various odd maladies I have suffered from while they have sat with tunnel vision on one symptom which I have had for 30+ years–my blood pressure, all the while ignoring my presenting complaint. (Ok, so I inserted an old rant here, thank you, drive through) The only reason I mention it is because it has caused a great deal of trust issues with regards to what we foolishly call Healthcare in America. (Oy, and I digress into politics, not my intention, [insert an emergency cute kitten picture here.]
When I was nursing I was a very good nurse. Without the least bit of conceit of self-aggrandizement, I can honestly say I was one of the best. So my transition over to the Hospice end of this journey has not run smoothly. I expect competence from people. I expect it most from professionals and salaried folk, even more so if I believe they should have as much smarts as I do— People with degrees should not be morons. One problem I think is that to the non-discerning eye, outwardly I do not look half bad. Just a fat, bald, slow-moving old woman. No big deal. But it is in my brain. That organ that pretty much controls everything. And it boggles my already boggled mind that nurses would not understand that to bombard that frizzled brain with a lot of information at once is like putting water through a sieve. Changes? Oh my holy Lord. I am lost. And again I look like a raving lunatic, because I cry, laugh, scream, and stare vacantly at inappropriate times. I would hope they would know this. But some are fooled by the “wellness” I seem to portray. It is chaos. This week Denise has had to take on any communication between the med staff and our family because my short term memory is almost completely gone, and I just screw up any information they give me.
So this seems to be turning into a kind of physical update, So I will give you a rundown. I am progressing rapidly it seems to me. I do not have as many “good” days as bad. A bad day is one that begins with me waking with a horrendous headache. I must get control of this pain early on, or it will wreck the entire day. I had to get over my aversion to taking “mind altering” drugs, and remind myself that this kind and amount of pain medication was meant for people like me, and just TAKE THE PILL. My eyesight is going, and I will be blind in both eyes soon. As most of you know the tumors affect my language center and I am once again losing that. It has also, this time, affected my speech, and talking is hard. I slur my words, and sometimes cannot find the right one for ages, as my brain spins its multitude of roll-a-decks up there. The prednisone has taken most, if not all of my muscle mass in my legs. Any strength there comes from prayer. I can walk (with a walker) perhaps 100 feet before the legs begin to wobble and I must sit and recharge. If I wait or am not near a seat (my walker is one with a seat, so is usually near by) the risk of my legs giving way is high, and a fall is imminent. I have fallen 4 times so far, but thank God with no real injury. I cannot get off the floor by myself, so I am the infamous “Help, I’ve fallen and I can’t get up!” Lady. My last spill was last night, I forgot for a moment that I could not just turn around quickly and spun around to check something and boom there went the knees and I buckled to the ground, the plate in my hand flying to the sky (it did not break) and after some of the pain of the fall subsided I began the scoot on my butt ala crab mode to the bedroom to grab a phone and call in the Calvary.
There is a big chair in my bedroom that I have found is easiest to get up on and then lift myself up, but this time I could not negotiate it solo. Eventually Mysi arrived and we got me in the chair, checked for injuries and new bruises. One on the knee. Oh, yea, forgot to say I am now plagued by petechiae over my arms, and other places. Once again side effect of the prednisone, and I bleed easily. So new bruises seem to just spontaneously appear.
This random little post has now been 3 days in the making. I cannot write long, words fail me. An odd feeling for me, the lady with a head full of words. A house full of beautiful books. Death has irony as well as chaos. I am also quickly going blind. My muscles of my legs are all but gone, they cannot lift me without great effort and getting up from any chair is a struggle and sometimes just managing to stand can take me 20 minutes or more.
I hate to appear to be a whiner on her pity pot when I digress into talking about the cancer, or Aunt Jenny talking about her gall bladder operation for the umpthteen time this week, because that is not my intent or my feelings in all this. Mainly I just do not want anyone to be surprised when they get the news that I died. “But she seemed fine yesterday!” And clinically, the whole process, looking from the inside out, is fascinating to me.
It is interesting that you feel yourself dying. Things shutting off or down. Like a long pilot’s flight checklist. I am flying away.