I have always had the ability to stand outside myself and watch myself objectively. When I was a child it was a sort of coping mechanism. Daydreaming, removing myself from either unpleasant or boring situations by being outside of it. Throughout this process of cancer and dying I have done this, and done clinical assessments of what is going on inside me. I also live in this body, so I have the unique ability to feel everything that is going on, all the myriad of minutiae of symptoms and changes, I feel or see immediately and acutely. I am curious of the causes. And as a clinician I run down the list each time. Medication induced? Tumor? Tiredness? Stress? Just old age? Paranoia?
I do see myself deteriorating. Small symptoms show up and become a part of my daily life, and I adjust. Cancer is a disease of continual adjustments. Life changes daily. I remember when I first got arthritis it was like that with my hands. I had to learn new ways of doing things. Sometimes I would hurt myself trying to do things the old way, and my hands just would not move that way anymore. I laughed about it, because I forgot for a moment my hands were all gnarled with joints slowly freezing in place. I do that now when I forget I can’t see on the left side, and plow right into something, or I forget my left thigh muscle has wasted down to a sliver of what it once was, and I try to stand alone on it, and begin to go over like a felled tree.
Of course most of what is happening has to do with the Brain Tumors, and there are 4 of them, so it is a fascinating and complex puzzle to me to figure out which one is causing what. I have what I have chosen to call “spot headaches” –short duration pain in my head in one spot or another. Nothing like the initial headaches which were my whole skull and so devastating they sent me to my knees in pain. Kind of a reminder from the tumors they are still up there, and they are still growing. The one giving me fits lately is close to my left ear. The other is just at the top of my head on the right. The largest one, the one on the cerebellum of course, is always making itself known, since it is on the “little brain” that controls so much of what we do.
When you think of the tumor on my cerebellum, and the subsequent swelling, you can see why it took my reading and writing on the onset, and why with the swelling diminished, I got it back. I do see it slowly being taken again. I am slower with my words, and I am not sure how long it will be before I will not be able to write again. Walking is a daily adjustment. I am never sure if I will be steady on my feet or completely wonkified. No wonder it takes so long to learn to walk. So many areas of the brain control some portion of it.
For those who are truly outside of me, my family and friends, I am sure it appears that I am doing fine, for the most part, and on most days I feel I am. I try to push through the exhaustion, although this current round is pretty darn intense and is winning the battle. I develop various work-arounds to persistent changes and symptoms to live and do as much as I can. Some are more successful than others. I do tell my sister Denise everything. I don’t want her blindsided by something sudden that we had warning signs about earlier.
Other ways I feel I am on the outside looking in, is with other people’s reactions to my Cancer, and my imminent death. Some people are in total denial. Nothing I relay about symptoms or how I am feeling has anything to do with the fact that I am dying, but in some strange way is just normal aging. Some are full of pity, some compassion. Some are obviously uncomfortable with all of it and avoid the subject entirely. I think death is harder on other people than on the one doing the dying. I think it is a constant reminder of their own mortality. I find it interesting that we all know that death is certain. We all die. But we are all in a kind of denial about it til it is smack in front of our faces.
I am still at peace with my own death, and blessed in some way everyday by it. Some goals have changed, and these I leave in God’s hands, He has His plan and timing. And that is perfect.
I have always been very independent. In fact probably fiercely independent. Asking for help is just something I do not do well. Thank God I have sisters who have stepped up to care about things and do things for me without my asking, or I would be facing my worst fear—living in squalor. Of course they would never let this happen, but I have always feared it. Being a “neat” hoarder, (I do purge every so often.) I am still a collector of junk, it is just neat junk (so far). But it is still hard for me to watch them run around and do things for me that I can no longer do. In recent days it has become harder to “push through” the fatigue and just do things anyway, those who have been in the military know this push. So do marathon runners. You must make it up that hill, your body is saying no way but you push anyway, and get there. The fatigue is too profound now when it comes. I cannot push through it. I must give in to it, and rest. It annoys the stubborn redhead in me.
Not knowing what my tumors look like now bugs me. I know they cannot do a scan now, because the radiation on my brain only finished 2 weeks ago, but when I have some odd sensation or symptom, I wonder if the beasts are on the prowl and taking over new areas of my brain. This next visit to the Oncology Doctor we are going to stop by medical records and get a copy of my chart and my first scans so I can have them for comparison when they finally do the next one, and so I might share them here so yall can see them. Fear of the unknown. This is the greatest fear for most human beings.
Although the steroids help the swelling in my head, and at first they were like tiny miracle pills because they kept the headaches at bay, now the side effects of them make me hate them. The swelling of my face and neck, the weakness in my upper legs, and the odd effects on my mood and appetite make me look down at the little pill with contempt. I am on 4 mg 3 times a day which is not much, and from what I have read, when things really get rocking and rolling that could be greatly increased just to keep me semi-functional. They are a necessary evil. As many great things that they do, the side effects are brutal at times.
I have had to begin to take pain pills. I do not like to take mind altering anything. Pain pills make me feel wonky in the head. I do not enjoy this feeling. I spent a lot of my life on mind altering drugs and gave it up and like my brain free of weird. But the headaches are creeping back, not near what they were when the brain cancer was unchecked, but they are there. Mostly spotty and dull, and my fear of the pain I did have when this whole thing started forces me to take action against them before they get out of hand. I also have more pain in my legs, most especially the left one and if I do not take a pain pill I do not walk as well because of the pain and my desire to be mobile overrides my hatred of the pain pills.
When I am alone I think too much. But I love to be alone. I have always treasured my solitude. People tucker me out. Even more so now. There is a good quote in CS Lewis’ book “A Grief Observed”:
“I find it hard to take in what anyone says. Or perhaps hard to take it in. It is so uninteresting. Yet I want others around me. I dread the moments when the house is empty. If only they would talk to each other and not to me.”
I enjoy people around, I just want them in the other room. Kind of like when our family would gather at my grandmother’s at holidays. I would find a spot in a quiet corner and just watch all the interactions of my relatives. I could pick and choose when I wanted to get up and participate in a conversation. I prefer to be the girl sitting behind the potted palm at most functions.
It is not hard for me to accept my death and I do wonder when it will come and how. I know I still have things I wish to get done, and I pray and try to trust in the Lord that they will get done. Sometimes this is very hard on the days when I am feeling weakest and death seems so close.
I fear losing functions again. Most especially my mind. I can deal with the weakness in my walking and my unsteady gait, I can deal with being clumsy and waddling when I walk, I can deal with the pain in my head and elsewhere, But I still have things I wish to write, and when I have a short term lapse of any kind in my ability to think and write and understand, it makes me panic a bit. I am less able to tolerate and think clearly when I have too much input, so I keep the house quiet when I can.
My prayers are for strength to get through each day. Every day I feel a bit weaker. Subtle, creeping weakness. My only strength comes from God.
“Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:28-31
I am not getting much sleep lately. Last night I was determined to sleep and went to bed early, and about an hour into it, I wake up with the most horrendous foot pain I was literally screaming aloud. I have not been sick much in my life except for the old age crap, heart and lungs and arthritis and constipation. But I have always been an insomniac. My father was one too. So I screamed for about an hour then called Denise, because I could not walk on my feet and this meant I would need help getting to the bathroom overnight. We considered going to the ER, but determined nothing was broken, (I thought it might be some kind of spontaneous break of a bone–it happens) Denise, however, much wiser than I am about such things (despite my being a nurse, Denise has has more health issues than me, so knows what this or that thing feels like) She says nerve pain.
So I have two kinds of pain pills, prescription type–one “light” and the big gun. I have been loath to use the big gun, because I hate feeling dopey. I spent a number of years on a bar stool making my butt and brain numb, and the feeling I get from pain pills just reminds me of that time in my life and annoys me at time wasted. But this was too much for me. So I pulled the trigger. Half an hour later the pain was gone and I was of course kicking myself for not just taking the damn pill.
Today the pain is mysteriously gone completely and I am left befuddled by what it was. What caused it, will it be back? I am also troubled that I did not handle it well. I gotta work on that. I panicked. Mostly because I still have things to do, I am going to have visitors all this week, and I am going to go to Texas next weekend, and I do not need a set back right now.