In all of the hustle and bustle of emotions, I forgot to wish everyone a Happy Leap Day! I was amazed by all the special sales and incentives given by retailers yesterday. My only question - whose idea was it to give us that extra day during winter? Couldn't they have given it to us in a more pleasant season such as spring, summer or fall?
We watched a most inspirational movie last night - We Are Marshall. This was one of the best films I have seen in a long time and I rank it up there with The Bucket List. For those who haven't seen it - it is based on a true story - how in one single moment the entire football team from Marshall University was killed in a plane crash on the way home from a game in 1970. What I found so inspirational was a certain dialogue that occurred between the head and assistant coach after painstakingly putting together a new team. In sports, the general consensus is that winning is all that matters - that is all anyone ever remembers. But at this one crucial moment it became evident that it wasn't about winning or losing, not even about how they played the game - but rather just simply that they took the field.
I liken this to my fight with kidney cancer and the views of the 'game' from others. Some say that winning this fight is all that matters - to beat the cancer. Others would say that it is how I play the game - that I should take every surgical procedure and medication available. Yet, it has become painfully obvious to me that sometimes all you can do is just 'take the field'. Right now, there are no procedures to do and medication is not something available to me as of yet. What counts the most is not how I play the game or even if I win - it's a matter of showing up and doing something positive with the most negative thing that has ever challenged me.
The showing up is the easy part - I don't really have a choice. I have cancer and that is something that I have to deal with. I started this blog as a way to reach out to others who find themselves in this game. This blog was never intended to be a bunch of positive fluff all the time - nor was the intention to make it depressing all the time. It just is what it is. It is a look into just one of the lives affected by cancer - a very real face of cancer. Nobody cares what I bought at the store yesterday or what I watched on TV last weekend. Most don't care what kind of music I liked as a teen or about my occasional walks down memory lane. But all of these are aspects of my life - my distractions, my reflections and the way that on most days I try to be as normal as possible. It doesn't get any more real than that.
My cancer affects me every day in some way - whether it be emotionally or physically. Some days I have some decent energy and drive myself to the store - other days I am too tired or sore and either have my hubby drive me or just let him run the errands all together. Some days I laugh and others I cry - some days I am angry and others I just feel numb. What I am not is depressed - and what I won't do is pity myself. I don't seek pity nor do I want people to feel sorry for me. I want those who don't know me to see how cancer affects a life - how the cancer doesn't define us, but it does change everything. I want those who do know me to be able to understand the words that I just can't say to them when they ask how I am doing.
I grieve most everyday for my life - I am 37 years old and even if I find a way to stay alive another 10 years - mine will still be a life cut short. Grief is a tough thing - for me and for my family and friends. The grief process began for me on October 22, 2007 - the day I got the Certified Letter in the mail from the hospital telling me that I had an abnormal CT scan and that it revealed a mass in my right kidney. I will never forget standing in that post office reading this letter - a post office I had never been to before and will likely never go back to again. In that moment I knew that I wasn't going to be lucky enough to just have something benign. I barely remember the drive home. It is like I was in a tunnel - thoughts sweeping through my mind about telling my husband, my parents - hearing the word 'cancer' from a doctor. I remember walking through the door, handing my husband the letter and both of us just crying - we knew in those moments what we were up against to some extent.
I didn't take time to grieve in the beginning - I was too busy being angry that I couldn't get Medicaid and feeling disgruntled that I couldn't find a surgeon to remove the kidney on a payment plan. I was so focused on a nephrectomy being the solution - too busy with the 'business' of this all. As long as I was filling out paperwork or emailing politicians, I was being proactive in getting a solution to my problem. It wasn't until 2 days after Christmas that I felt the brakes being put on my drive to solve this. I finally took the time to listen to the doctors, research to clarify and validate what they were saying to me regarding the risks and evaluate how I want to spend the rest of my life.
How I spend my life is up to me - always has been. My body - my choices. I decided 2 months ago to focus on quality of life - a choice that has met a certain resistance from my support group and others out in cyber space. I am a college educated woman with a degree in Health Sciences - and I know how to research for the information I need. I didn't know anything about kidney cancer in the beginning - but I learned. Not everyone knows how to research for the information they need - not everyone takes the time to validate what it is that their physician is telling them. I question everything. My doctors know that I will carry a conversation with them about my cancer and do it intelligently. Carolyn knows that I am not afraid to question a prescription choice that she makes for me - to make suggestions based on information I glean from my support group. Carolyn has learned that I am very proactive in my health care and that I alone make the final choice of what plan of action we will take.
By January 8, 2008 everything changed. I felt the change while sitting on the plane on the way to my sister in Wichita. My hope had shifted a bit - I was no longer driven to find a cure for myself - but rather to start experiencing the things that I always put off - no matter how trivial they may have been. Thanks to my parents - my biggest wish of all happened. I got to spend some good quality one-on-one time with my sister - to converse with my nephews as young men, in a way that I couldn't have talked with them when they were kids - and to find the love of a smooth coated Dachshund, Sugar. I worried so much about my sister before going to Kansas and how she would handle the diagnosis and possibly losing her little sister. I met many of her friends and discovered that she has the best support group - she has a group of ladies out there in Wichita that love her for who she is and will help her with no matter what life hands her - just as they always have. These ladies rallied around me and helped my sister show me a very good time in Wichita. For that I will always be grateful. My sincere thanks to Dee, Anita, Teresa and Donita.
I decided after this that I wanted to not only be 'remembered' but that I needed to start appreciating the little things and noticing more of the beauty that God gave to us. Some of the things I will miss most about this world are watching the snowflakes fall from the sky and amass on the ground, watching a calf experience its new world out in the pasture for the first time, viewing a thunderstorm form off in the distance and the feelings of cool raindrops or a warm summer breeze on my face. I will miss so much about nature here. God did a beautiful job with the gifts He gave us to enjoy everyday. I just wish we would have taken better care of them.
Initially I bought small notebooks to scrapbook something special for my husband, children and family members. The original thought was to make a book for each person - but I haven't quite gotten there yet. Every time I would start to work on one - I would just cry. I also decided to make music CD's for everyone as well - but personally tailored to give each person some of my favorite pics of the music they like. I wrote my obituary and began to make a list of songs that I wanted to compile into a CD for my funeral. It was important for me to put together things that would accurately portray who I was, what was important to me and that would shape the way I wanted to be remembered. I had started writing letters to my children, parents, sister and husband.
It is now March 1st, and I continue to evolve in the grief process. The letters are stored on my computer and are incomplete - the notebooks are full of blank pages - the CD's have never been completed. Each new day brings the realization that this is the best I will likely ever feel. As time goes by I will gradually feel worse, have to slow down more and will miss and reflect on the days that I felt better. I don't want to spend the good days chained to my computer or sitting and scrapbooking - these are things I can do later when I can't just 'get up and around'. There will be a time for this - but now isn't that time. I have considered the possibility of 'what if that time never comes?' - after all, I could just slip away one night in my sleep. If that happens - I will be remembered. For those who know me and love me - they won't need a scrapbook to remember my smile - they won't need a letter to remind them of what I enjoyed most about this life - and they won't need a CD to remind them that mine was a life driven by music, that every song had some special meaning to me or evoked a personal memory. I realize now that I will be remembered for the essence of who I am - not the image I wanted to create in their minds. It won't be because I lost the game or that I didn't perform according to others playbooks - it will be just because I took the field with dignity and courage and a smile.
This blog has become more and more precious to me as the weeks and months go by. My hope is that this blog will be around in cyber space long after I am gone. That someone newly diagnosed will find a compassionate and understanding friend here - someone who knows exactly what they are going through. Someone who can learn that there is a season for everything. That no matter how you scale the stages of grief, you are not alone and what you are feeling is NORMAL. Even if the letters and scrapbooks and CD's never get completed - there will be my blog. My children will learn from this blog many of the things that I would have told them myself. They will see a woman faced with a challenge, one who fought and experienced the emotions of anger, joy, sadness and gratitude. If I can leave one legacy it is that your first allegiance is to God - you pray and let God write your playbook. And sometimes all you can do is just stay on the field until He blows that last whistle.
We watched a most inspirational movie last night - We Are Marshall. This was one of the best films I have seen in a long time and I rank it up there with The Bucket List. For those who haven't seen it - it is based on a true story - how in one single moment the entire football team from Marshall University was killed in a plane crash on the way home from a game in 1970. What I found so inspirational was a certain dialogue that occurred between the head and assistant coach after painstakingly putting together a new team. In sports, the general consensus is that winning is all that matters - that is all anyone ever remembers. But at this one crucial moment it became evident that it wasn't about winning or losing, not even about how they played the game - but rather just simply that they took the field.
I liken this to my fight with kidney cancer and the views of the 'game' from others. Some say that winning this fight is all that matters - to beat the cancer. Others would say that it is how I play the game - that I should take every surgical procedure and medication available. Yet, it has become painfully obvious to me that sometimes all you can do is just 'take the field'. Right now, there are no procedures to do and medication is not something available to me as of yet. What counts the most is not how I play the game or even if I win - it's a matter of showing up and doing something positive with the most negative thing that has ever challenged me.
The showing up is the easy part - I don't really have a choice. I have cancer and that is something that I have to deal with. I started this blog as a way to reach out to others who find themselves in this game. This blog was never intended to be a bunch of positive fluff all the time - nor was the intention to make it depressing all the time. It just is what it is. It is a look into just one of the lives affected by cancer - a very real face of cancer. Nobody cares what I bought at the store yesterday or what I watched on TV last weekend. Most don't care what kind of music I liked as a teen or about my occasional walks down memory lane. But all of these are aspects of my life - my distractions, my reflections and the way that on most days I try to be as normal as possible. It doesn't get any more real than that.
My cancer affects me every day in some way - whether it be emotionally or physically. Some days I have some decent energy and drive myself to the store - other days I am too tired or sore and either have my hubby drive me or just let him run the errands all together. Some days I laugh and others I cry - some days I am angry and others I just feel numb. What I am not is depressed - and what I won't do is pity myself. I don't seek pity nor do I want people to feel sorry for me. I want those who don't know me to see how cancer affects a life - how the cancer doesn't define us, but it does change everything. I want those who do know me to be able to understand the words that I just can't say to them when they ask how I am doing.
I grieve most everyday for my life - I am 37 years old and even if I find a way to stay alive another 10 years - mine will still be a life cut short. Grief is a tough thing - for me and for my family and friends. The grief process began for me on October 22, 2007 - the day I got the Certified Letter in the mail from the hospital telling me that I had an abnormal CT scan and that it revealed a mass in my right kidney. I will never forget standing in that post office reading this letter - a post office I had never been to before and will likely never go back to again. In that moment I knew that I wasn't going to be lucky enough to just have something benign. I barely remember the drive home. It is like I was in a tunnel - thoughts sweeping through my mind about telling my husband, my parents - hearing the word 'cancer' from a doctor. I remember walking through the door, handing my husband the letter and both of us just crying - we knew in those moments what we were up against to some extent.
I didn't take time to grieve in the beginning - I was too busy being angry that I couldn't get Medicaid and feeling disgruntled that I couldn't find a surgeon to remove the kidney on a payment plan. I was so focused on a nephrectomy being the solution - too busy with the 'business' of this all. As long as I was filling out paperwork or emailing politicians, I was being proactive in getting a solution to my problem. It wasn't until 2 days after Christmas that I felt the brakes being put on my drive to solve this. I finally took the time to listen to the doctors, research to clarify and validate what they were saying to me regarding the risks and evaluate how I want to spend the rest of my life.
How I spend my life is up to me - always has been. My body - my choices. I decided 2 months ago to focus on quality of life - a choice that has met a certain resistance from my support group and others out in cyber space. I am a college educated woman with a degree in Health Sciences - and I know how to research for the information I need. I didn't know anything about kidney cancer in the beginning - but I learned. Not everyone knows how to research for the information they need - not everyone takes the time to validate what it is that their physician is telling them. I question everything. My doctors know that I will carry a conversation with them about my cancer and do it intelligently. Carolyn knows that I am not afraid to question a prescription choice that she makes for me - to make suggestions based on information I glean from my support group. Carolyn has learned that I am very proactive in my health care and that I alone make the final choice of what plan of action we will take.
By January 8, 2008 everything changed. I felt the change while sitting on the plane on the way to my sister in Wichita. My hope had shifted a bit - I was no longer driven to find a cure for myself - but rather to start experiencing the things that I always put off - no matter how trivial they may have been. Thanks to my parents - my biggest wish of all happened. I got to spend some good quality one-on-one time with my sister - to converse with my nephews as young men, in a way that I couldn't have talked with them when they were kids - and to find the love of a smooth coated Dachshund, Sugar. I worried so much about my sister before going to Kansas and how she would handle the diagnosis and possibly losing her little sister. I met many of her friends and discovered that she has the best support group - she has a group of ladies out there in Wichita that love her for who she is and will help her with no matter what life hands her - just as they always have. These ladies rallied around me and helped my sister show me a very good time in Wichita. For that I will always be grateful. My sincere thanks to Dee, Anita, Teresa and Donita.
I decided after this that I wanted to not only be 'remembered' but that I needed to start appreciating the little things and noticing more of the beauty that God gave to us. Some of the things I will miss most about this world are watching the snowflakes fall from the sky and amass on the ground, watching a calf experience its new world out in the pasture for the first time, viewing a thunderstorm form off in the distance and the feelings of cool raindrops or a warm summer breeze on my face. I will miss so much about nature here. God did a beautiful job with the gifts He gave us to enjoy everyday. I just wish we would have taken better care of them.
Initially I bought small notebooks to scrapbook something special for my husband, children and family members. The original thought was to make a book for each person - but I haven't quite gotten there yet. Every time I would start to work on one - I would just cry. I also decided to make music CD's for everyone as well - but personally tailored to give each person some of my favorite pics of the music they like. I wrote my obituary and began to make a list of songs that I wanted to compile into a CD for my funeral. It was important for me to put together things that would accurately portray who I was, what was important to me and that would shape the way I wanted to be remembered. I had started writing letters to my children, parents, sister and husband.
It is now March 1st, and I continue to evolve in the grief process. The letters are stored on my computer and are incomplete - the notebooks are full of blank pages - the CD's have never been completed. Each new day brings the realization that this is the best I will likely ever feel. As time goes by I will gradually feel worse, have to slow down more and will miss and reflect on the days that I felt better. I don't want to spend the good days chained to my computer or sitting and scrapbooking - these are things I can do later when I can't just 'get up and around'. There will be a time for this - but now isn't that time. I have considered the possibility of 'what if that time never comes?' - after all, I could just slip away one night in my sleep. If that happens - I will be remembered. For those who know me and love me - they won't need a scrapbook to remember my smile - they won't need a letter to remind them of what I enjoyed most about this life - and they won't need a CD to remind them that mine was a life driven by music, that every song had some special meaning to me or evoked a personal memory. I realize now that I will be remembered for the essence of who I am - not the image I wanted to create in their minds. It won't be because I lost the game or that I didn't perform according to others playbooks - it will be just because I took the field with dignity and courage and a smile.
This blog has become more and more precious to me as the weeks and months go by. My hope is that this blog will be around in cyber space long after I am gone. That someone newly diagnosed will find a compassionate and understanding friend here - someone who knows exactly what they are going through. Someone who can learn that there is a season for everything. That no matter how you scale the stages of grief, you are not alone and what you are feeling is NORMAL. Even if the letters and scrapbooks and CD's never get completed - there will be my blog. My children will learn from this blog many of the things that I would have told them myself. They will see a woman faced with a challenge, one who fought and experienced the emotions of anger, joy, sadness and gratitude. If I can leave one legacy it is that your first allegiance is to God - you pray and let God write your playbook. And sometimes all you can do is just stay on the field until He blows that last whistle.