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