Willow or Rock?

    Saturday, August 9, 2008, 11:29 AM [General]

    It comes down to change and how I decide to deal with it. Do I bend or do I stand? Maybe do both?

    I have a cancer called glioblastoma multiforme. It is a stage four cancer of the brain. I found out, was diagnosed, February of this year. I had an incredible headache that just wouldn't go away. When I went to the ER a CT found a mass that an MRI confirmed as two tumors. When they were removed they were malignant and of the type that will come back. There is no cure for GBM. One can only treat it, fight it and live with it until one finally cannot live any more. That may be months or years.

    So how to do that? Do I bend? Do I stand and fight? There is an inevitability here. I will not win. My life will be shorter than I want it to be. I want my life. That means fight. But how?

    I can't make GBM go away. Right now there is no cure. I have to live with it and that means bend. I can, with the help of my med team make the life I have more comfortable. That means stand.

    So it's a combination, isn't it? Cancer isn't something that comes from outside. It wells up within the body. It's a shock. Lots of things come from inside but somehow, to me, cancer feels like it's actively trying to kill me. It has all the ammunition and I have a pop gun. There is no early detection for GBM. It is a primary brain cancer- it develops in the brain, stays in the brain and kills the brain. It is implacable, won't stop coming for me and will overwhelm all my efforts. I hate that. I feel like I have no control here.

    Since I have no control, can't win, why fight? I want my life, that's why. I also want some grace and peace. People tell me to go on, live, don't think about cancer. I hear that the treatment worked and that I can relax until the next time. Don't think so. I don't dwell on this every bit of every day but this is part of my life now. There has to be accommodation.  I think I have to bend to the changes that GBM brings, stop the progression where I can and live in the space between.

    I take such joy in the small things of my life. I love playing on line. I love my family, my pets, my friends. I love to watch the day slide by. I don't feel the need to be in frenetic activity. I don't feel the need to have my space filled with light, noise, sound and movement. Living can be a simple as a cup of coffee, a cat in my lap and watching the kids play in the yard. Life is resting too.

    I will do what I can. I will take my joy and try to share it. When the time comes I will bend and I will die. That is what everyone has to do. We don't get out of this world alive. 

     

     

     

     

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    Finding a way

    Friday, July 25, 2008, 3:42 PM [General]

    In the last few weeks I have been looking for a way to be. I have cancer. I was diagnosed, in February, with glioblastoma multiforme. It is classed by the WHO as stage four. What that means to me is there is no cure. It is aggressive, doesn't respond well to treatment and will come back. It is a primary cancer of the brain and will not metastasize to another part of my body. That I am grateful for. At this point, not quite six months later, I am stable. I will know if I have more tumor in August when I have another MRI. I have no symptoms that tell me I may have a tumor growing. No headaches, no persistent nausea, very few cognitive issues,  no balance problems or personality changes. I didn't loose much cognitive function when my surgeon removed, as much as he could, the two cancerous tumors.  For that, I am more than grateful.

    I am blessed in many ways. This could have been much more grim. The tumors could have been inoperable. In taking them I could have lost more brain tissue than I did. My therapy could have been harder on me. I suffered mostly from cancer fatigue. I had little or no nausea that is associated with radiation and chemo. Yes, blessed is a very apt word.

    Still this whole experience leaves me trying to find a way. I mean a way to live in this world and a way to leave it. I have focused on my treatment and fighting cancer. I was in the thick of the fight, busy, motivated, angry and blazing away at this monster that has usurped my life and invaded my brain. I am through the initial treatment. I am on a maintenance dosage of Temodar- the drug of choice for GBM. Now I can breath and look forward. It just seems that the road is gone.

    I had a plan at one time. I was going to drive a truck until I reached age sixty then retire to my home. That changed. I can't drive now. I could have seizures. I can't take the chance of having a seizure while driving a big truck. I could easily kill someone. I can't be that selfish. I may never have a seizure and then I could have one in the next minute. No, I won't play Russian roulette with another person's life.

    Now, I have time. I have life. Yet I don't really have a way. I know, in my head and heart, that I am alive today. I will also be alive tomorrow. My life is precious to me. I try to make a difference to the people around me. I won't let cancer have my life. That is mine and mine alone! This disease can kill me but it can't stop me living my life on my terms today.

    I am looking for something. A way. To where? Don't know. I think it needs to have a bridge though. I feel like I am on the edge of a canyon or river. I can see the other side, the way yet I can't get there. The canyon is too wide or the river is too deep. What's over there has to have a purpose. I am feeling purposeless right now. I have things to do but not purpose, other than doing them, for those things. I do them because I must.  I want to be passionate about something! I was passionate about my driving. Yes, it was work. Yes, it was hard at times.  It was also such an adventure. I felt as if I mattered. I did. Now I feel like I am on the side of the road watching other people who have purpose go zooming by me.

    I am missing something. It's probably right at the end of my nose. I will begin volunteering at my cancer center next month. That is purpose.  Actually, just being is purpose. I don't want to mark time and watch. I want to find a way to get out there, across that bridge, on that busy highway and move. I know this a failing on my part. I just can't see where I am missing the point here.

     

     

     

     

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    Beginning

    Monday, July 14, 2008, 5:06 PM [General]

    I was doing my usual and flitting about the boards today.  I was struck by two different people and what they had said to me or written. The one gave me the inspiration for my title. The other left me with the thought that there is an undiscovered world here and it is where we live.

    I am not a particularly articulate woman. I can write well enough to be understood most of the time. I just want to have this space to think, muse and ponder.

    Life is such a profound gift. I think I have taken that for granted most of my life. Oh, I have gotten reminded of it from time to time. Usually it was when someone I loved died or at the birth of a child

     I understood it in other ways. I would feel that, think about it then let it go. I just was so busy doing that I didn't really take the time to appreciate what life was. Then I got brought up short. I developed a cancer where, at this point, there is no cure. It is a very nasty bugger.

    I went through being angry. I railed and raged at the universe. I am a young woman and while I have no fixed time here I know that it's not likely to be as long as I want or as long as I expected. I was angry about all the things I might not get to do. I say I went through being angry but that really isn't right. I still have that boiling rage at times. I was so very angry! There came a point when I realized that all my energy was going into anger and none into what I need right now.  I simmered down and started to think and evaluate.

    I want to make a difference. I was looking around to find a way to do that. It was right under my nose. Simple in fact. I don't have to do something great and earth shaking to make a difference. I have always said that but somehow I think that it was an in my head thing and not an in my heart thing. Cancer, and the wisdom of friends I don't know well yet, finally helped me to make what my head has always known journey to my heart. What I do every day makes a difference. A profound difference.

    To make a profound difference in the lives of our loved ones is, again, simple. Really. We need to be engaged in life. A profound act is getting a tired man a cup of coffee. My dear friend, who has married the woman who was my sister-in-law works long, hard hours. He comes in tired to the boned. So, I make coffee and when he comes in I hand him a cup. That is profound.

     He made a difference in my life. He treats me like his sister. After losing my brother his kindness and love has blown me completely away.  He married my SIL after my brother was killed in an industrial accident. No, nortright away.  :) He did though and has taken on the responsibility of raising my oldest nephew and niece. He and Gwen have another child together. She is named in part for me. That's profound.

    Profound sounds like it requires much contemplation, wise words, a weighty book. It isn't what it sounds like at all. It sneaks in the back door and operates in my life in so many ways. I never noticed it until today. I am so blessed.

    Now about that in between world.  I lived in Arizona when I was in the Army. I fell in love with the desert there.  I truly think that magic lives there. There is a mystery and grandeur that is completely breath taking It feels to me to  ancient and patient. I could sense something waiting and at times I thought I saw a flicker of it from the corner of my eye. Magic. I still love that area and I want to go back there. I think of that part of Arizona as home like I think of where I live.

     I read something here that took me back there. I closed my eyes and found myself walking that desert, those canyons and mountains. I gazed out seeing the interplay of light and shadow. I saw again the crystalline sky. I felt between here and now. After indulging myself I opened my eyes and found that while I was daydreaming (meditating?) a wonderful thing had occurred. I looked at my beloved home and realized I was between the worlds right here in the back yard! Another blessing indeed. Sigh...I just wish I didn't have to whacked on the nose in order to 'get it'. Yet, I did and that too is  a mystery to me. It seems like we live in mystery wherever we are. I got so lucky today. I saw it. I felt it. I was part of it. Now, if only I can stay in touch with it.

     

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