The three drug reps were talking in the lunchroom among themselves, but loud enough for me to hear them from the hallway. All three of them young and healthy, all three of them looking at their latest drug's new development/testing results/data from a strictly clinical selling point of advantages over the old drugs/competition. One young lady put it simply: "where you used to get two years, now you get three years." I thought to myself...smiling as I walked..."you don't have a clue, little girl."
We were so busy at the cancer center yesterday, I had no time to offer these young ladies a different perspective on their drug and its data. I would have LOVED to have said to them:
"I know you're bragging on your drug here, but always remember that in those three years you're talking about, some people "got" five years, some people only "got" one. You have a three year average to talk about today, but in reality, there's a whole new crowd of folks just like me.....waiting for the new drug regimen...not even part of the numbers, yet. People like me who are determined to by-pass the life-expectancy you're talking about. People who are determined to blow that three-year average out of the water. We were not a part of your clinical trials and we are not yet, as long as we are breathing, reduced to an average of life expectancy for your drug. When it comes down to it, ladies, the fact of the matter is you get what you get and that's it. Not one day more, not one day less."
Now don't get me wrong. I wasn't offended or angry or upset by what I had overheard. I think nurse Gail thought it might have bothered me in some way. Had I had any time to sit and talk with her, I would have said: I know this is part of the deal of hanging out with you guys once a week. I know this kind of casual talk about people's lives is just a clinically medical way to receive information and deal with the enormous responsibility of treating the catastrophically
ill. I am totally fine with that. But there is a part of me that wants those drug reps to understand the other side of the fence, that we, the human beings waiting with ready veins and hope for the life-saving or life-extending drugs they sell have not yet been factored in. And some of us will not want to know about the extra year, because we don't consider ourselves part of the mix....part of the data...we were not in the study...and we will have extra years.
After a day like yesterday in the office as a volunteer, when things were crazy busy, and several patients were struggling with their latest turn of events, I was left feeling so downright grateful.
Grateful for the life I live. Grateful for the treatment I have been given. Grateful for the way everyone who has had anything to do with my care over these almost eight years has never once
put me in a box of numbers and results and data. Grateful for a staff of friends who are on the same page with me, knowing that we get the days, weeks, months, and years that we are given by God and that's what we get. No more, no less.
And when you come to realize that about life, when you really get that concept, it can free you up
and let you make your journey through the rest of your life rich, and fun, and meaningful. Despite your disease, despite your circumstances, despite what the drug reps have to say.
We all get what we get and we need to honor God by making the most of it.
"Do not boast about tomorrow, for you do not know what a day may bring forth." Proverbs 27:1
Tuesday, August 26, 2008
Thursday, August 21, 2008
The pill
Can't they just make a pill for it??
If they could just make a pill that for one full day, you could be transported away from the crushing reality of cancer. That for 24 hours you could look at your husband, your children,
your friends and not think: "oh my, how could I ever leave them....let them down....cause them anguish. Why do they have to be burdened? How did this all happen?"
24 hours of normalcy...the old normal....the before cancer normal.
When you worried about your hair and how you looked in a bathing suit.
When your child had not known the fear of "Mommy has cancer."
When there were no questions of why, no thoughts of how could this have happened, and no
doubts about the future.
When you ran three miles on the treadmill and taught kickboxing.
When you still viewed yourself as sexy.
24 hours of no scars. No pain. Great sleep.
A full day out from under the suffocating fact that you are forever-more under some thick type of water, molasses in the winter, slowly drowning inch-by-inch and hour-by-hour.
24 hours without any pills but the one pill to make you forget everything since the first instant you heard your name and cancer together.
The longer I live, the further away I have gotten from mourning my old life that was ripped away with my diagnosis. But I often see other patients whose diagnosis is new and the facts of what they have lost are haunting them. I see it in their eyes, whether they want to come to grips with it or not: nothing will ever be the same again. They will replay their old life and new reality over and over and over in their heads, not able to sleep, not able to yet accept their altered state.
I remember so well a moment I had when I was in between surgery and my very first chemo treatment. We were down on our sailboat, the Slow Dance, for the weekend. Everything on the boat and at the marina was exactly how we had left it four weeks before....but nothing was the same. In a rare moment of raw emotion, I turned to my husband and screamed over and over: "I want my life back!, I just want my life back." I knew this place, this boat, our weekends were never going to be the same. We sold the boat the next month. That part of us gone....a new normal to come.
Over the years since that last day on our boat, I have still lived a great life, a rich life, and a life filled with more joy, love, and faith than I ever thought possible. The new richness and fullness of my life and God's ever-present faithfulness has allowed me to not only survive but become a much better wife, mother, friend, and human being. I am so grateful. But there is still a small part of me that makes me want to look back every once in a while and long for my old life. And for all the things the Lord has done for me, he has not erased my memories or delivered me completely from these dark and heavy waters. I am so saved in spirit...yet I am still fighting against the current, struggling to keep my head above the surface. Cancer has become like constant dark cloud on my horizon. Always within view. Or the constant low hum of a refrigerator....background noise for my life with no letting up, no sweet silence. It is a fact we now always have to factor in...no matter what we have planned or how good I feel.
So if they could just make a pill for us, the ones slowly drowning, the ones who do not know how to keep from looking back and longing for another time, another place, another circumstance. Those of us who feel the constant erosion every day of our bodies and our futures.
Just 24 hours, one more day, to not be the one with cancer on their resume. What I would pay for a pill like that.
If they could just make a pill that for one full day, you could be transported away from the crushing reality of cancer. That for 24 hours you could look at your husband, your children,
your friends and not think: "oh my, how could I ever leave them....let them down....cause them anguish. Why do they have to be burdened? How did this all happen?"
24 hours of normalcy...the old normal....the before cancer normal.
When you worried about your hair and how you looked in a bathing suit.
When your child had not known the fear of "Mommy has cancer."
When there were no questions of why, no thoughts of how could this have happened, and no
doubts about the future.
When you ran three miles on the treadmill and taught kickboxing.
When you still viewed yourself as sexy.
24 hours of no scars. No pain. Great sleep.
A full day out from under the suffocating fact that you are forever-more under some thick type of water, molasses in the winter, slowly drowning inch-by-inch and hour-by-hour.
24 hours without any pills but the one pill to make you forget everything since the first instant you heard your name and cancer together.
The longer I live, the further away I have gotten from mourning my old life that was ripped away with my diagnosis. But I often see other patients whose diagnosis is new and the facts of what they have lost are haunting them. I see it in their eyes, whether they want to come to grips with it or not: nothing will ever be the same again. They will replay their old life and new reality over and over and over in their heads, not able to sleep, not able to yet accept their altered state.
I remember so well a moment I had when I was in between surgery and my very first chemo treatment. We were down on our sailboat, the Slow Dance, for the weekend. Everything on the boat and at the marina was exactly how we had left it four weeks before....but nothing was the same. In a rare moment of raw emotion, I turned to my husband and screamed over and over: "I want my life back!, I just want my life back." I knew this place, this boat, our weekends were never going to be the same. We sold the boat the next month. That part of us gone....a new normal to come.
Over the years since that last day on our boat, I have still lived a great life, a rich life, and a life filled with more joy, love, and faith than I ever thought possible. The new richness and fullness of my life and God's ever-present faithfulness has allowed me to not only survive but become a much better wife, mother, friend, and human being. I am so grateful. But there is still a small part of me that makes me want to look back every once in a while and long for my old life. And for all the things the Lord has done for me, he has not erased my memories or delivered me completely from these dark and heavy waters. I am so saved in spirit...yet I am still fighting against the current, struggling to keep my head above the surface. Cancer has become like constant dark cloud on my horizon. Always within view. Or the constant low hum of a refrigerator....background noise for my life with no letting up, no sweet silence. It is a fact we now always have to factor in...no matter what we have planned or how good I feel.
So if they could just make a pill for us, the ones slowly drowning, the ones who do not know how to keep from looking back and longing for another time, another place, another circumstance. Those of us who feel the constant erosion every day of our bodies and our futures.
Just 24 hours, one more day, to not be the one with cancer on their resume. What I would pay for a pill like that.
Tuesday, August 19, 2008
I've had trouble
I've had some trouble. I've had trouble sleeping well. I've had trouble waking up feeling icky, I've had trouble with pain after exercise. I've had trouble logging on my blog account. (hence the long absence) I've had trouble getting to church and remembering a meeting. I've had trouble with my car, trouble with my life insurance company, trouble over a disability check, trouble with a few of my dogs, and periodic trouble with my stomach. I have had a slightly troubling trend in my marker numbers. You know what I say? SO WHAT?
My personal troubles over the last few weeks were at one point a major focus in my head...a source of angst, or fear or frustration. I was feeling myself drifting away. Away to a bad place of self-doubt, self-pity, less faith.....growing despair. Questions of the future, the past, the present, the constant mind-swirling of a person like me....a patient like me.
Then two things happened:
1) I had a phone call from a 41 year old woman who was in treatment at MD Anderson (big time)
for metastatic disease with a similar history to me. As we exchanged stories I began to realize that I was getting great medical care, just as many chances, just as many successes, and even more breaks than someone who was flying to Houston TX every three months. Affirmation of something I had always suspected.....there is no better place than with Maha, Janet, and the
girls.
2) I went to the beach. My great husband saw the blues heading my way and put me in the car for an overnight to Wrightsville. Sitting in chairs, where the water just rushes under your feet, we talked and swam and reveled in the beauty of it all for three hours. We had dinner looking out over the intracoastal waterway, walked the docks looking at ridiculously expensive yachts,
slept in late and drove back home. It was so therapeutic. My troubles faded into the background and life, wonderful life came back into focus.
My troubles, in the great big scheme of life, are no different than anyone else's. They are just like anyone's , but they have different names and one has a relentless mission to slowly take over my body. If there is one thing that I have learned over the last two weeks, especially through volunteering, is that everyone has troubles....and God always has a way of showing me that mine are small and meaningless because He will take care of me. This time, when I was about to sink under the weight of all my troubles, God saved me yet again. Through a long, affirming phone call and a chair on the beach in the sun.
"Peace I leave with you, my peace I give to you......Do not let your hearts be troubled and do not be afraid." John 14:27
My personal troubles over the last few weeks were at one point a major focus in my head...a source of angst, or fear or frustration. I was feeling myself drifting away. Away to a bad place of self-doubt, self-pity, less faith.....growing despair. Questions of the future, the past, the present, the constant mind-swirling of a person like me....a patient like me.
Then two things happened:
1) I had a phone call from a 41 year old woman who was in treatment at MD Anderson (big time)
for metastatic disease with a similar history to me. As we exchanged stories I began to realize that I was getting great medical care, just as many chances, just as many successes, and even more breaks than someone who was flying to Houston TX every three months. Affirmation of something I had always suspected.....there is no better place than with Maha, Janet, and the
girls.
2) I went to the beach. My great husband saw the blues heading my way and put me in the car for an overnight to Wrightsville. Sitting in chairs, where the water just rushes under your feet, we talked and swam and reveled in the beauty of it all for three hours. We had dinner looking out over the intracoastal waterway, walked the docks looking at ridiculously expensive yachts,
slept in late and drove back home. It was so therapeutic. My troubles faded into the background and life, wonderful life came back into focus.
My troubles, in the great big scheme of life, are no different than anyone else's. They are just like anyone's , but they have different names and one has a relentless mission to slowly take over my body. If there is one thing that I have learned over the last two weeks, especially through volunteering, is that everyone has troubles....and God always has a way of showing me that mine are small and meaningless because He will take care of me. This time, when I was about to sink under the weight of all my troubles, God saved me yet again. Through a long, affirming phone call and a chair on the beach in the sun.
"Peace I leave with you, my peace I give to you......Do not let your hearts be troubled and do not be afraid." John 14:27
Tuesday, August 12, 2008
The article
My sister-in-law called my yesterday. She wanted to know if I was interested in doing a follow-up piece for the Charlotte Woman's magazine she works for. In 2002, I wrote an article for the October, Breast Cancer Month issue, describing what is was like to go through a stem-cell-treatment and recover. I covered areas like how did I come to that decision, how did I get through the tough treatment, and how did I cope?
She now would like me to follow up with a story about what it is like to live with the disease for so long. It will be an article about "the new face of breast cancer." This time, the article will be about how I get through all the tough times...how do I cope...but mostly how do I live.
The article will be a lot about trust. Trust in my incredible medical team. Trust in the amazing ability of the human body to recover from numerous treatments. Trust that the next treatment will leave you better off than the last one. Trust that there is a purpose for you in all this. Trust that this is a life for you to live to the utmost and fullest. And trust, of course, "in the steadfast love of God forever and ever." Psm. 52:8
After volunteering at the Cancer Center yesterday, I had my monthly visit with Janet. I will not know what my marker number will be until today or tomorrow. But I will have to trust, once again, that whatever it is, we have a plan set in place to keep me moving forward. To keep me around and help me live with it. As we sat in the exam room, she had a little trouble entering my treatment option into my file on the computer. This treatment of Xeloda pills will be my ninth chemo regimen since recurrence in 2004. The computer could only take six. Oops.....so sorry to outlive your computer's parameters of possibilities for long-term care and survival. (not!) When you count the five hormonal courses (Tamoxifen, Aromisin, Femera, Fosalodex, Arimedex) there have been a total of fourteen medical treatments for me in almost five years.
Looking back on all that, looking back to times like February 10, 2004, January 2006, July 23. 2007, November 1, 2007.....the times when news was bad and a crack was made in my armour of trust, I am so glad that we.....everyone involved in my love and care....were able to trust in each other and in the Lord that we could all live through it. That I, for some unknown and divine reason have been able to stick around, cope, manage, live my life like always. With faith, enthusiasm, wonder, and trust.
After yesterday's morning of having the privilege of working side-by-side with the wonderful angels in the back treatment room, after my exam with my friend Janet and the computer problem, after the phone call about the follow-up article, I had an hour and a half drive to think about what it has been like, what it means to live with chronic, metastatic disease. I know I will have quite a bit to say. I hope when it is finished and people will read it, it will say all I need to say about faith, love, determination, optimism, trust, and all the people who carry me through my chronic-breast-cancer life. I hope all who read it will see that women are living longer with it, thriving despite it, coping with life just like any one else.
Most of all, I pray and believe that there are and will be many others like me and coming after me who will be sitting in an exam room one day and have to laugh at the computer like Janet and I did and realize that it just might be time to change the parameters that have been set up by that machine...it knows nothing.... and live by the trust we put in the Lord.
Trust in the Lord. That is how I cope. That is how I have come through 14 treatments and all the scans, tests, and news that goes with them. That is how I live.
"Let me hear your steadfast love in the morning, for in you I put my trust. Teach me the way I should go, for to you I lift up my soul." Psalm 143:8
She now would like me to follow up with a story about what it is like to live with the disease for so long. It will be an article about "the new face of breast cancer." This time, the article will be about how I get through all the tough times...how do I cope...but mostly how do I live.
The article will be a lot about trust. Trust in my incredible medical team. Trust in the amazing ability of the human body to recover from numerous treatments. Trust that the next treatment will leave you better off than the last one. Trust that there is a purpose for you in all this. Trust that this is a life for you to live to the utmost and fullest. And trust, of course, "in the steadfast love of God forever and ever." Psm. 52:8
After volunteering at the Cancer Center yesterday, I had my monthly visit with Janet. I will not know what my marker number will be until today or tomorrow. But I will have to trust, once again, that whatever it is, we have a plan set in place to keep me moving forward. To keep me around and help me live with it. As we sat in the exam room, she had a little trouble entering my treatment option into my file on the computer. This treatment of Xeloda pills will be my ninth chemo regimen since recurrence in 2004. The computer could only take six. Oops.....so sorry to outlive your computer's parameters of possibilities for long-term care and survival. (not!) When you count the five hormonal courses (Tamoxifen, Aromisin, Femera, Fosalodex, Arimedex) there have been a total of fourteen medical treatments for me in almost five years.
Looking back on all that, looking back to times like February 10, 2004, January 2006, July 23. 2007, November 1, 2007.....the times when news was bad and a crack was made in my armour of trust, I am so glad that we.....everyone involved in my love and care....were able to trust in each other and in the Lord that we could all live through it. That I, for some unknown and divine reason have been able to stick around, cope, manage, live my life like always. With faith, enthusiasm, wonder, and trust.
After yesterday's morning of having the privilege of working side-by-side with the wonderful angels in the back treatment room, after my exam with my friend Janet and the computer problem, after the phone call about the follow-up article, I had an hour and a half drive to think about what it has been like, what it means to live with chronic, metastatic disease. I know I will have quite a bit to say. I hope when it is finished and people will read it, it will say all I need to say about faith, love, determination, optimism, trust, and all the people who carry me through my chronic-breast-cancer life. I hope all who read it will see that women are living longer with it, thriving despite it, coping with life just like any one else.
Most of all, I pray and believe that there are and will be many others like me and coming after me who will be sitting in an exam room one day and have to laugh at the computer like Janet and I did and realize that it just might be time to change the parameters that have been set up by that machine...it knows nothing.... and live by the trust we put in the Lord.
Trust in the Lord. That is how I cope. That is how I have come through 14 treatments and all the scans, tests, and news that goes with them. That is how I live.
"Let me hear your steadfast love in the morning, for in you I put my trust. Teach me the way I should go, for to you I lift up my soul." Psalm 143:8
Monday, August 4, 2008
Even Though
"If only we could inject her with all of what we know," I said to the patient outside the bathroom door last Thursday. He and I...veterans of a long road. Both of us stem-cell transplantees, both of us in it for the long road. Both of us fearless fighters in the battle....walking, talking proof of life still well lived, even though.
Even though he and I had gotten devastating news on numerous occasions. Even though we had been treated hundreds of times between us. Even though our lives had been forever altered by the dark and creeping monster. Even though....here we were, standing in the hallway. Worried about another.
I could not possibly make her understand that life will still be lived even though on that day last Thursday she did not believe, could not believe that she would ever feel better, look better, think better than she did at that moment. So sick, so much pain, so much fear, so despondent.
"Fight, fight , fight!", I wanted to shout. I wanted to see her buck-up, get my words, pick up the sword, get mad, get determined and get going. If only we could inject her with the knowledge....
That even though she is so afraid, the fear will lessen.
Even though she hurts, the pain will subside.
Even though she is so weak, her body will recover.
Even though she is sick, a pill will stop that and that feeling will go away after treatment.
Even though she is in such despair, there is hope...of all kinds...waiting for her.
Even though the news is terrible, the future not so rosy, the sun will rise again tomorrow and she can rejoice in every day she is given....for that is all any of us are promised...today, our one day to live as best we can.
And even though she feels alone and in a dark place, there are people like him and me.... one patient hooked up to his IV, one patient volunteering, who know what it is like to come from such a place, to live through such despair and to live life fully.... even though.
I hope with all my heart she begins to fight, dives into the battle, hangs on tooth and nail for every improvement, chance, and possibility, even though she is so weak she can barely stand. I hope she knows that her fight is best fought in her spirit, her soul....the places where cancer cannot touch. Most of all I hope that she knows that God can help her with all of it, any of it, even though, no, no, particularly because she has been told the bad,bad news.
"Therefore take unto you the whole amour of God, that you may be able to withstand the days of evil, and having done all, to stand." Ephesians 6:13
Even though he and I had gotten devastating news on numerous occasions. Even though we had been treated hundreds of times between us. Even though our lives had been forever altered by the dark and creeping monster. Even though....here we were, standing in the hallway. Worried about another.
I could not possibly make her understand that life will still be lived even though on that day last Thursday she did not believe, could not believe that she would ever feel better, look better, think better than she did at that moment. So sick, so much pain, so much fear, so despondent.
"Fight, fight , fight!", I wanted to shout. I wanted to see her buck-up, get my words, pick up the sword, get mad, get determined and get going. If only we could inject her with the knowledge....
That even though she is so afraid, the fear will lessen.
Even though she hurts, the pain will subside.
Even though she is so weak, her body will recover.
Even though she is sick, a pill will stop that and that feeling will go away after treatment.
Even though she is in such despair, there is hope...of all kinds...waiting for her.
Even though the news is terrible, the future not so rosy, the sun will rise again tomorrow and she can rejoice in every day she is given....for that is all any of us are promised...today, our one day to live as best we can.
And even though she feels alone and in a dark place, there are people like him and me.... one patient hooked up to his IV, one patient volunteering, who know what it is like to come from such a place, to live through such despair and to live life fully.... even though.
I hope with all my heart she begins to fight, dives into the battle, hangs on tooth and nail for every improvement, chance, and possibility, even though she is so weak she can barely stand. I hope she knows that her fight is best fought in her spirit, her soul....the places where cancer cannot touch. Most of all I hope that she knows that God can help her with all of it, any of it, even though, no, no, particularly because she has been told the bad,bad news.
"Therefore take unto you the whole amour of God, that you may be able to withstand the days of evil, and having done all, to stand." Ephesians 6:13
Subscribe to:
Posts (Atom)