I am telling my personal story because on May 26 the Institute for Clinical and Economic Review (ICER), a group that develops cost effectiveness reports for new treatments, held a public meeting in St. Louis about their draft report on the value of multiple myeloma treatments. I feel it is my duty to testify for all patients of this dread disease so that no treatments that demonstrate efficacy should be denied that extend or improve life because of monetary concerns
I want to emphasize the utter shock one goes through when one first hears the diagnosis of cancer. You go into an emotional tailspin at the mention of the "C" word. Before the diagnosis, I had erected a mental fence in my mind separating cancer victims and healthy people. I had distanced myself emotionally from cancer and I wrapped myself in a kind of smug superiority that outwardly hid my dread of the disease. The diagnosis came like this: "I have good news and bad news. The bad news is you have an incurable cancer. The good news is that it is multiple myeloma which is highly treatable with drugs that have been recently developed that have minimal side effects which allow for the patient to resume a very normal lifestyle that can persist for a long time."
Of course, I only heard the word cancer! There went the fence separating me from them! The emotion poured out of me and my brothers who were there. I would need immediate surgery to strengthen my fifth cervical vertebrae which had been badly damaged by a cancerous lesion. The surgeon performed what I deemed a miracle by removing the cancerous tissue and shoring up the vertebrae with a metal scaffold. I was told I had stage 3 multiple myeloma and my prognosis was five years.
All of this washed over me so quickly that it was like being in a dream. Luckily, I had my brothers and good friends to help me comprehend the situation and the flood of information that I was given. Radiation was first administered to reduce the tumors that were eroding bone in my hips, neck and pelvis. Then, I was given a course of Revlimid combined with Dexamethazone for about a year. My blood chemistry improved over that time and I was finally declared in remission. I am six years out from the 2010 diagnosis, with a recurrence of the cancer last spring. I was then treated at Mayo Clinic with cryosurgery to the iliac crest of my hip. The tumor was literally frozen off. I again went into total remission and my life has been normal, except for a hip replacement (soon to be followed by a second one for the left leg) since then.
Yet, myeloma manifests itself idiosyncratically in individual cases. My fellow myeloma patients, as I have learned in conferences and support groups and seminars, all manifest the disease differently. This is where the art of the medical profession comes in. The good multiple myeloma doctor has an arsenal of therapies to choose from that have been developed in the last twenty odd years that have improved the outcome of the disease and significantly lengthened the life expectancy of sufferers and improved their lives.
As patients, we support each other and share our knowledge about our journey that truly helps us weather the storm. We have mourned those who have lost the battle and marveled at their courage and tenacity. This is what being human is all about, I have learned. It's about supporting one another during tough times and coming together to help and aid others as they come to our aid in times of need. Families, friends, co-workers, are all affected by a diagnosis of cancer, and besides taking so much away, it gives us the opportunity to come together and do what we do best: act cooperatively when danger threatens.
Living with cancer has changed me in many ways. Of course, I no longer take life for granted. I am more aware of the time I have left and what I want to do with it. I try to be more courteous, kind and generous than before. I have opened up emotionally more. I try to live my life in the present as much as possible. I have been more productive as an artist and designer since the diagnosis. I became married for the first time at 66 years of age to the medical technician who attended me in the hospital after my initial surgery. I have acquired a new family: her son and daughter and a granddaughter who have all added immeasurably to the depth of my emotional life.
One becomes more concerned about one's legacy no matter how slight when they are diagnosed with cancer. I am more concerned and active in local politics where my participation might affect my neighborhood and community. I see my age and wisdom as a benefit to be shared where I can with young people. I am therefore less competitive and more nurturing. As a grandfather, I provide the unqualified love and support that a child needs to feel secure and confident while they are growing up. As a loving husband, I work with my wife to maintain a home and to expand both of our interests and talents.
All of this is to say that my life, post-cancer, is better, more fulfilling and impactful than before. A maturation process can accompany the diagnosis of cancer. All of this would not have been possible without the drugs and therapies that have only recently become available to me. I am extremely thankful to the doctors, advocates and scientists that work tirelessly to improve therapies and outcomes. And I especially thank the patients that have gone before me and that are no longer here for their courage and tenacity in the face of this dreadful disease. I would not be here, doing what I am doing, were it not for all of these people. The community of cancer is far different from what I imagined it before I became ill. I have truly come of age as I make this journey. I am a far better person for it.
Therefore, I am appalled that a draconian cost-benefit efficacy analysis should inform any decisions regarding the ministration of the healing arts. Medicine advances and saves lives as much by art as by science, as much by heart as by numbers, as much by curiosity as by money. As a compassionate, civilized society, we must offer the best medicine we have to the patients who need it most without reservation. This is our legacy to generations to come.
The author, Tom Hardy, is a myeloma patient and a member of the International Myeloma Foundation.
Photo was taken at the Patients Rising media briefing on May 24th in St. Louis.
Of course, I only heard the word cancer! There went the fence separating me from them! The emotion poured out of me and my brothers who were there. I would need immediate surgery to strengthen my fifth cervical vertebrae which had been badly damaged by a cancerous lesion. The surgeon performed what I deemed a miracle by removing the cancerous tissue and shoring up the vertebrae with a metal scaffold. I was told I had stage 3 multiple myeloma and my prognosis was five years.
All of this washed over me so quickly that it was like being in a dream. Luckily, I had my brothers and good friends to help me comprehend the situation and the flood of information that I was given. Radiation was first administered to reduce the tumors that were eroding bone in my hips, neck and pelvis. Then, I was given a course of Revlimid combined with Dexamethazone for about a year. My blood chemistry improved over that time and I was finally declared in remission. I am six years out from the 2010 diagnosis, with a recurrence of the cancer last spring. I was then treated at Mayo Clinic with cryosurgery to the iliac crest of my hip. The tumor was literally frozen off. I again went into total remission and my life has been normal, except for a hip replacement (soon to be followed by a second one for the left leg) since then.
Yet, myeloma manifests itself idiosyncratically in individual cases. My fellow myeloma patients, as I have learned in conferences and support groups and seminars, all manifest the disease differently. This is where the art of the medical profession comes in. The good multiple myeloma doctor has an arsenal of therapies to choose from that have been developed in the last twenty odd years that have improved the outcome of the disease and significantly lengthened the life expectancy of sufferers and improved their lives.
As patients, we support each other and share our knowledge about our journey that truly helps us weather the storm. We have mourned those who have lost the battle and marveled at their courage and tenacity. This is what being human is all about, I have learned. It's about supporting one another during tough times and coming together to help and aid others as they come to our aid in times of need. Families, friends, co-workers, are all affected by a diagnosis of cancer, and besides taking so much away, it gives us the opportunity to come together and do what we do best: act cooperatively when danger threatens.
Living with cancer has changed me in many ways. Of course, I no longer take life for granted. I am more aware of the time I have left and what I want to do with it. I try to be more courteous, kind and generous than before. I have opened up emotionally more. I try to live my life in the present as much as possible. I have been more productive as an artist and designer since the diagnosis. I became married for the first time at 66 years of age to the medical technician who attended me in the hospital after my initial surgery. I have acquired a new family: her son and daughter and a granddaughter who have all added immeasurably to the depth of my emotional life.
One becomes more concerned about one's legacy no matter how slight when they are diagnosed with cancer. I am more concerned and active in local politics where my participation might affect my neighborhood and community. I see my age and wisdom as a benefit to be shared where I can with young people. I am therefore less competitive and more nurturing. As a grandfather, I provide the unqualified love and support that a child needs to feel secure and confident while they are growing up. As a loving husband, I work with my wife to maintain a home and to expand both of our interests and talents.
All of this is to say that my life, post-cancer, is better, more fulfilling and impactful than before. A maturation process can accompany the diagnosis of cancer. All of this would not have been possible without the drugs and therapies that have only recently become available to me. I am extremely thankful to the doctors, advocates and scientists that work tirelessly to improve therapies and outcomes. And I especially thank the patients that have gone before me and that are no longer here for their courage and tenacity in the face of this dreadful disease. I would not be here, doing what I am doing, were it not for all of these people. The community of cancer is far different from what I imagined it before I became ill. I have truly come of age as I make this journey. I am a far better person for it.
Therefore, I am appalled that a draconian cost-benefit efficacy analysis should inform any decisions regarding the ministration of the healing arts. Medicine advances and saves lives as much by art as by science, as much by heart as by numbers, as much by curiosity as by money. As a compassionate, civilized society, we must offer the best medicine we have to the patients who need it most without reservation. This is our legacy to generations to come.
The author, Tom Hardy, is a myeloma patient and a member of the International Myeloma Foundation.
Photo was taken at the Patients Rising media briefing on May 24th in St. Louis.
