Sarcoma - is there an uglier word in the English language? If there is I don't ever want to hear it in reference to anyone I love. Synovial Cell Sarcoma has invaded my family and I just want to go somewhere and scream at the top of my lungs. The doctors talk about treatment options that sound worse than the disease. They sit in their white coats and calmly use phrases like "quality of life" and "life ending illness". My heart is aching so badly I can barely speak. The doctors leave the room and I put my arms around my daughter, hugging her so tightly, never wanting to let go.
We try to plan for the coming months of chemotherapy that they say will be so debilitating that she will not be able to work or care for her children. We try to figure out what to say to a twelve year old who has only one parent as it is. We sit in silence and cry, and cry, and cry.
I wake up in the morning and for one fraction of a second I forget, and then it all rushes back in, this nightmare that I can't wake up from. People say that you don't get more than you can handle and I say bullshit to that. If I believed in a god who is in control of our life events I would hate the mother fucker. I want to dig a hole, crawl in and pull the dirt in over me.
Exploring the depths of my being, hoping to shed light on the dark side of my soul.
Thursday, May 24, 2012
Bad News
We all know on some level that our lives can take a turn at any given moment, that in the space between two heartbeats everything can change, for better or for worse. How many of us are really aware, though, of that exact moment when everything you trust goes flying on the wind and a whole new reality comes in to fill the void?
Some of these moments come to us in slow motion, when you go into the bathroom and open the box, sit on the toilet and pee on the little cardboard strip, waiting to see if it turns pink or not. You sit down on the couch after dinner to watch the days lottery numbers come up, your heart beating a little faster with each number that comes up and matching your ticket, until finally you see that all of the digits match and your voice is stuck on oh my god for the next three minutes.
Other times the moment comes and goes and you don’t even realize it. You are introduced to the person who you will love for the rest of your days, and you are busy thinking about the how you are going to finish the project you are working on by the deadline your boss has given you. You look into his eyes and fail to see your children looking back at you, or the devotion he will show when you begin to forget how to find your way home from the grocery.
Then there are those moments when you know immediately that life has taken a turn. You day is going along in the same routine manner that it has every day for years, when some piece of hard reality comes at you in a phone call or a knock on the door. There can be no question that all you know to be true has been turned upside down and there is no going back. Try as you will to rearrange the pattern of days making the pieces fall just enough to the left so that the resulting picture will be more to your liking, it all comes back to cold reality. The bottom fell out of my world on a warm July afternoon in 2011. As I was about ready to leave my office for the day, my cell phone rang. It was one of my daughters, telling me that she was in the emergency room at the local hospital. I could hear the panic in her voice as she said "Mom, there is a mass in one of my lungs".
Some of these moments come to us in slow motion, when you go into the bathroom and open the box, sit on the toilet and pee on the little cardboard strip, waiting to see if it turns pink or not. You sit down on the couch after dinner to watch the days lottery numbers come up, your heart beating a little faster with each number that comes up and matching your ticket, until finally you see that all of the digits match and your voice is stuck on oh my god for the next three minutes.
Other times the moment comes and goes and you don’t even realize it. You are introduced to the person who you will love for the rest of your days, and you are busy thinking about the how you are going to finish the project you are working on by the deadline your boss has given you. You look into his eyes and fail to see your children looking back at you, or the devotion he will show when you begin to forget how to find your way home from the grocery.
Then there are those moments when you know immediately that life has taken a turn. You day is going along in the same routine manner that it has every day for years, when some piece of hard reality comes at you in a phone call or a knock on the door. There can be no question that all you know to be true has been turned upside down and there is no going back. Try as you will to rearrange the pattern of days making the pieces fall just enough to the left so that the resulting picture will be more to your liking, it all comes back to cold reality. The bottom fell out of my world on a warm July afternoon in 2011. As I was about ready to leave my office for the day, my cell phone rang. It was one of my daughters, telling me that she was in the emergency room at the local hospital. I could hear the panic in her voice as she said "Mom, there is a mass in one of my lungs".
Saturday, April 23, 2011
Just The Two of Us...Finally
I have come to believe that the “Empty Nest” syndrome is highly overrated. I hear stories of parents, mothers in particular, who feel lost, abandoned, aimless, when their kids leave home. I had my first child thirty six years ago, and until last week had one or more children and/or grandchildren living in the same house. I have fantasized about the time when they would all be gone on to find their way in the big world, on a different piece of real estate, never believing that it would really happen. Well, now it has.
In the 1970’s, The Walton’s was my favorite TV program. I loved it so much I actually named several of my children after characters on the show. Seeing the multiple generations living together on the farm gave me a warm fuzzy feeling after every episode. The big kitchen, full of three generations of women working to prepare the family meals seemed so appealing. When they all gathered at the table to discuss their problems, or sat around the radio listening to world events, I just knew I wanted my family to live like they did.
I lost track of the times that the shed next to the farm house was redone to accommodate one of the Walton children and their growing need for independence. It served as a private writing place for John Boy, a newspaper office (again for John Boy), a home for Ben and Cindy when they got married, and numerous other incarnations as the seasons progressed. When we bought our farm, I imagined the same kind of life for us. Our children were having children, and this was a place that could grow and change with the family. Sadly, life does not imitate art in the way that I would like it to. I imagined that we would be like the Walton’s, and in reality we are more like the Simpsons.
In my real family, the kids fight, run away from home, take drugs, won’t clean up after themselves, and generally conspire to drive me crazy. Thus my change of attitude toward the “Empty Nest” syndrome.
During the last season of the Walton’s, the mother is conspicuously absent. She is away “contributing to the war effort” and finally “in a sanitarium in Arizona because of her TB”. Then in the last few episodes, the father disappears, supposedly to join mom in Arizona. I found this to be highly disappointing. At the time I felt that Mama and Daddy Walton would never leave their children behind to fend for themselves. Now I think I understand completely.
In the 1970’s, The Walton’s was my favorite TV program. I loved it so much I actually named several of my children after characters on the show. Seeing the multiple generations living together on the farm gave me a warm fuzzy feeling after every episode. The big kitchen, full of three generations of women working to prepare the family meals seemed so appealing. When they all gathered at the table to discuss their problems, or sat around the radio listening to world events, I just knew I wanted my family to live like they did.
I lost track of the times that the shed next to the farm house was redone to accommodate one of the Walton children and their growing need for independence. It served as a private writing place for John Boy, a newspaper office (again for John Boy), a home for Ben and Cindy when they got married, and numerous other incarnations as the seasons progressed. When we bought our farm, I imagined the same kind of life for us. Our children were having children, and this was a place that could grow and change with the family. Sadly, life does not imitate art in the way that I would like it to. I imagined that we would be like the Walton’s, and in reality we are more like the Simpsons.
In my real family, the kids fight, run away from home, take drugs, won’t clean up after themselves, and generally conspire to drive me crazy. Thus my change of attitude toward the “Empty Nest” syndrome.
During the last season of the Walton’s, the mother is conspicuously absent. She is away “contributing to the war effort” and finally “in a sanitarium in Arizona because of her TB”. Then in the last few episodes, the father disappears, supposedly to join mom in Arizona. I found this to be highly disappointing. At the time I felt that Mama and Daddy Walton would never leave their children behind to fend for themselves. Now I think I understand completely.
Monday, May 3, 2010
Endings
In 2005, I accompanied my uncle to a doctor's appointment. He was going to be hearing the results of some tests that were performed in the weeks before. I suspected the news was not going to be good, and it was not. Stage 4 prostate cancer, already in his bones and lymph nodes. My uncle never married, he had no children. I was his "person". We walked out of the doctor's office, I hugged him and promised him that he was not going to go through it alone. However, I felt totally unprepared for the task of acting as patient advocate, caregiver, support person for someone with a terminal diagnosis. I only knew that it was my duty; to him, my deceased mother and grandmother, my family.
Some people would fall into depression at a diagnosis of terminal cancer. My uncle bought a three wheeled bicycle, tricked it out with flags, horn and various other accessories and proceeded to ride around town like an eight year old without a care in the world. He continued to be involved in all of the things he most loved, rarely missing a meeting, event or scheduled volunteer opportunity. He never complained, ever. He made sure that his affairs were in order, and went about the business of living.
In the ensuing months we both learned more than either one of us ever wanted to know about the workings and failings of the human body. Hormone therapy, radiation treatments, blood transfusions, creatinine and hemoglobin levels all became topics of our conversations. We came to know the nurses and office staff at the cancer center very well. We memorized the drink menu at the coffee shop in the lobby. I bought my knitting to pass the time while he received intravenous medications and blood transfusions. We watched the news and commented on the state of the world as he fought for his life.
I did not feel equipped to care for him, to make this difficult detour on his journey with him. But he led the way. He demonstrated a quiet dignity and grace throughout the next four and a half years that inspired me in so many ways. Mostly I just needed to show up, to sit with him, to let him talk about whatever he needed to talk about. It was only at the very end that I needed to step up, to act on his behalf and do the most difficult things. As I held his hand in those last few hours I wished for more time, to say the things I hadn't said, to ask the questions that only he knew the answers to. I would like to say that I am satisfied with the way that his last days and hours played out, but I am not. I will probably always feel that I could have done more, that my best just wasn't good enough. I can, however, accept that I did the best I could, and that is all he expected of me. I must be content to know that he was not alone, that his life was wonderful and sitting by his side as he left us was a gift he gave to me, not the other way around.
Some people would fall into depression at a diagnosis of terminal cancer. My uncle bought a three wheeled bicycle, tricked it out with flags, horn and various other accessories and proceeded to ride around town like an eight year old without a care in the world. He continued to be involved in all of the things he most loved, rarely missing a meeting, event or scheduled volunteer opportunity. He never complained, ever. He made sure that his affairs were in order, and went about the business of living.
In the ensuing months we both learned more than either one of us ever wanted to know about the workings and failings of the human body. Hormone therapy, radiation treatments, blood transfusions, creatinine and hemoglobin levels all became topics of our conversations. We came to know the nurses and office staff at the cancer center very well. We memorized the drink menu at the coffee shop in the lobby. I bought my knitting to pass the time while he received intravenous medications and blood transfusions. We watched the news and commented on the state of the world as he fought for his life.
I did not feel equipped to care for him, to make this difficult detour on his journey with him. But he led the way. He demonstrated a quiet dignity and grace throughout the next four and a half years that inspired me in so many ways. Mostly I just needed to show up, to sit with him, to let him talk about whatever he needed to talk about. It was only at the very end that I needed to step up, to act on his behalf and do the most difficult things. As I held his hand in those last few hours I wished for more time, to say the things I hadn't said, to ask the questions that only he knew the answers to. I would like to say that I am satisfied with the way that his last days and hours played out, but I am not. I will probably always feel that I could have done more, that my best just wasn't good enough. I can, however, accept that I did the best I could, and that is all he expected of me. I must be content to know that he was not alone, that his life was wonderful and sitting by his side as he left us was a gift he gave to me, not the other way around.
Wednesday, December 23, 2009
Solstice Thoughts
I have always dreamed of writing one of those beautiful Holiday letters. You know, the ones that tell all of the marvelous things that have happened throughout the year? Well, this is the year. The problem is, if I went into detail about all of the events in our lives, you would probably run screaming for the medicine cabinet for either a nausea remedy or something to combat depression.
So, rather than go into all of the details of our barn burning down, our daughters tragic automobile accident, month in the hospital, the ensuing thousands of miles driven to doctors appointments, the tragic loss of a friend’s son in Afghanistan, the death of two other dear friends to cancer, etc, etc, etc., I will tell you what I have learned in the past year.
I have learned that possessions are the least important things in my life. Losing everything in my barn was an inconvenience, not a tragedy. I have learned that insurance companies are not our friends, they are not on our side no matter how much you pay them.
I have learned that your life can change in a second. One minute you can be watering your flower beds, and the next minute racing to the scene of an accident. All of your plans can go right out the window, sidelined by the needs of someone else. I have learned that the love of friends and family can sustain you through the darkest moments. I have learned that having someone provide a home cooked meal for you means more than anything, and that a friend coming over and cleaning your bathroom can lift your spirits like nothing else can. I have learned on a whole new level that I am not in control of much of anything in my life. I have learned once again that love is not a feeling, it is an action, it’s what you do when things are really, really hard.
I have learned gratitude for the simplest joys in my life. I have learned to embrace the struggles of my own and those that I love. I have learned that loss is a tool for growth. Through our grieving we discover who we really are, what we are truly made of.
The Winter Solstice is a time for embracing the dark and rejoicing in a return to the light. In celebration of the cycles we all endure, I cherish the dark and frightening lessons which lead me to a more enlightened understanding of myself and my place in the world.
So, rather than go into all of the details of our barn burning down, our daughters tragic automobile accident, month in the hospital, the ensuing thousands of miles driven to doctors appointments, the tragic loss of a friend’s son in Afghanistan, the death of two other dear friends to cancer, etc, etc, etc., I will tell you what I have learned in the past year.
I have learned that possessions are the least important things in my life. Losing everything in my barn was an inconvenience, not a tragedy. I have learned that insurance companies are not our friends, they are not on our side no matter how much you pay them.
I have learned that your life can change in a second. One minute you can be watering your flower beds, and the next minute racing to the scene of an accident. All of your plans can go right out the window, sidelined by the needs of someone else. I have learned that the love of friends and family can sustain you through the darkest moments. I have learned that having someone provide a home cooked meal for you means more than anything, and that a friend coming over and cleaning your bathroom can lift your spirits like nothing else can. I have learned on a whole new level that I am not in control of much of anything in my life. I have learned once again that love is not a feeling, it is an action, it’s what you do when things are really, really hard.
I have learned gratitude for the simplest joys in my life. I have learned to embrace the struggles of my own and those that I love. I have learned that loss is a tool for growth. Through our grieving we discover who we really are, what we are truly made of.
The Winter Solstice is a time for embracing the dark and rejoicing in a return to the light. In celebration of the cycles we all endure, I cherish the dark and frightening lessons which lead me to a more enlightened understanding of myself and my place in the world.
Wednesday, October 7, 2009
Love
Much has been written over the eons about love. Mostly romantic love with all of its ecstasy, pitfalls and drama. There is the love we feel for our children, our animals, our new car. People are liable to say that they "love" a new t.v. show or celebrity. So, really, what is love? It's easy to say that you love someone. It's pretty easy to feel love for someone. The really difficult task is in truly loving them. Love is not a noun, it is a verb, an action. Without the action, all the pretty words mean nothing. When your three month old baby is crying incessantly at 3:00 in the morning, do you get out of bed for the umpteenth time and try to soothe them because you feel this great love for them, or because you just want them to shut up so you can get back to sleep? Love is the thing you do when you do not feel loving, when a person is the hardest to love, how do you act toward them?
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