Living with Leukemia
Donation protected
This is a story I never wanted to share, but it is mine and the time has come.
The story is very complicated and long and I do not wish to elicit pity or make anyone sad. I have resisted telling it because I don’t want to need help or seem weak, but I do need help and I am physically too weak to keep going for much longer. I don’t even like the word “sick” and I am not a victim. Ultimately I am grateful for all of the pain and illness I have had to live with because now I can look back and know that I am truly not afraid to die. I have lived a good life. I have been kind and I have tried to live every day in gratitude for all the gifts I have been given. I am afraid, however, to keep living in a body that is not nearly as strong as my spirit and to feel like I can no longer contribute to the world in a positive way. The day has come when I am asking for help so I can hopefully have the resources to heal and once again play the piano.
My birth made medical history. October 10th, 1978 at Thomas Jefferson Hospital in Philadelphia. My Mother developed a 13 pound tumor 7 months into her pregnancy that was crushing me and killing us both. I suppose I came into this world stubborn and fighting to have survived that. Much later, when I began having mysterious health issues, I would find out that my Mom had been exposed to agent orange while pregnant with me living in the woods in Oregon. It is believed this caused the tumor and some of my subsequent health issues.
When I was 16 I left for college to study music and psychology with a full scholarship. I hoped to help people someday. During my first break from College I was a passenger in a car accident where I sustained severe whiplash damage to my jaw, neck, and back as well as a head injury. Apparently I should have been killed instantly. I was told I would never play the piano or the clarinet again. I refused to believe these things and went on to finish my degree in music performance, graduating with top music performance honors.
During this time however, I was in constant agonizing pain. I was seeing doctors, physical therapists, massage therapists and whoever else I could. I was doing this alone. I had also lost my visual memory, most of my depth perception and had to relearn how to use my eyes to read music. I could only practice the piano for a few minutes at a time but I didn’t want to tell anyone the real truth. That I couldn’t feel anything because it was too hard to live in my body anymore and I was ashamed.
My jaw was operated on twice while I was in school, with the surgeon saying it was “the worst case scenario” and I would likely never get much better. The doctors turned out to be right about that and I had to give up the clarinet. I learned during that time to live with pain. I put my own needs and feelings somewhere far inside and pushed myself until my body literally gave out. Something drove me to continue though. I think now, it was fear of seeming weak, of needing anyone. I had to prove I could still be who I thought I was supposed to be. Invincible? Worthy? Lovable? I learned that people are not to be trusted and that they would push me and use my abilities until there was nothing left. I didn’t know how to say no. I lost myself and my connection to music. I also refused to truly let anyone know how much I was suffering.
After a break from playing due to pain and exhaustion I agreed to accompany the choirs in the Coos Bay Schools starting in 2007. At first I was terrified walking into a classroom, but over time I learned ways to make the pain tolerable and truly came to love working with the students and watching them grow as musicians and people. I believe that the energy I received back from them and the joy of being involved with music again helped keep me alive. I worked there until 2 years ago when I was forced to resign due to my deteriorating health. During all of these years after college I was without medical insurance and continued to try and heal my body. I spent every dollar I had searching out new therapies, new doctors, and was then informed about the agent orange exposure and subsequent endocrine issues. My first surgery on my abdomen was in 2005. After years of searching, I was finally put on a treatment regimen that helped with the endometriosis and PCOS pain, but I had also been diagnosed years before with Fibromyalgia, Chronic Fatigue, Chronic Pain, Severe TMJ and a Traumatic Brain Injury. I had never fully recovered from the car accident and was living in a body I didn’t trust. My case was extremely complicated already and I was trying to live as best I could and appreciate each moment. I spent as much time as possible outside, connecting to nature. I still had this overwhelming drive to help make the world a little brighter. To contribute, no matter the cost to myself.
I even went to massage school in Ashland and opened a practice in Bandon so that I could help other people in pain. I felt like I had first hand knowledge of what it was like to be in pain and wanted to make some kind of difference in the lives of other people in a similar situation. This further weakened me. I eventually began having severe exhaustion, even more wide spread pain and gastrointestinal issues. About 8 years ago I started being unable to eat almost anything and lost weight and rapidly declined in strength and vitality. Today I weigh about 99 lbs. I’m 5’6”. Prior to this I could tell my body wasn’t functioning properly and had started seeking help. I had test after test to determine an underlying cause with no real answers. I had no insurance and spent everything I had on medical treatments to improve my condition. Due to pre-existing conditions I wasn’t able to get insurance until about 5 years ago when I committed to working full time for the school district. This still didn’t cover everything and the bills kept piling up.
In April of 2014 I had part of my small intestine removed and again with an emergency surgery in November of 2014. The following April I had my gallbladder removed. Last February, after multiple attempts at putting in a PICC line, using heparin locks and most of my veins being too scarred to use, I had surgery to put a port in my chest so I could receive IV fluids and nutrition. At this point I was not functioning. No one could explain what was going on. I didn’t have an obvious diagnosis for the gastrointestinal issues. I was put on disability and basically have been trying to maintain some quality of life since then. The combination of the car accident, agent orange exposure, and all of the surgeries has taken its toll. I have spent tens of thousands of dollars trying to “get better”. Right now I owe about $8,000 on credit cards from medical bills and $18,000 of medical bills I paid off with a loan against my home. I can’t make the payments anymore and the bills keep coming in. I was automatically placed on Medicare because of my disability and just found out I will be losing most of my Medicaid which was paying most of what Medicare does not. If this continues, I will lose everything.
I think, even more than the pain and being nauseous, sick and weak all the time, I miss being able to contribute. I still try to be strong and don’t often tell people these things, which leaves me isolated and alone. The truth is I don’t know from one day to the next how I will feel. Will I be up sick all night and not be able to walk? Will my legs be cramping so badly that I can’t even drive to the park? Do I need to go to the hospital? Again? If I black out again will I wake up? Do I need another imaging study? More radiation exposure? More pain medication? Why can’t I just fix this myself? Why? Am I too weak? Did I do something to deserve all of this? I need IV’s and help with the pain but I can’t afford it so I suffer in silence. It’s ugly. Truly ugly. Constant pain for 20 years changes a person. All the time I’ve lost in all of the surgeries scares me. I don’t want to have to share this but it is the reality of my physical body. A reality I am having trouble facing.
Now, I want to make a distinction. During all of these years there have been various people who questioned how I was still alive. I think there is something driving me still which I have to admit has kept me alive but has also kept me from asking for help before now. I felt like I had to do it alone. I can’t be weak. I don’t want to be a burden or really tell people how terrible I feel. I also feel like there is a deep, eternal part of me that is completely separate from all of this and that is the reason I am still here. I see so much beauty in the world. I smile at everyone even when I feel terrible, especially the people who don’t smile back. I try to be a source of light and kindness in the world. In every interaction, in everything I do, I try to radiate peace and light. This is all I am physically capable of for now, but I believe it is actually a huge gift. I am starting to truly believe that I can be loved and I didn’t deserve this stuff. Yes, it happened to me, but I am grateful. I am strong. A weaker person would not have survived and I know that without a doubt I am meant to share music again with this world. I am not a sad person and this is not a sad story. Maybe I’m just so stubborn that it took all of this for me to see how amazing life actually is and that we are ultimately all fighting our own battles but we don’t have to do it alone.
Last February, during a stay in the hospital, the surgeon discovered I have an extremely rare condition called celiac artery compression syndrome. The surgery is risky but I have decided to have it done here in Ashland this Fall. There is a chance it will not help at all and I will just be weaker coming out the other side. There could be complications, but I feel like if there is even the slightest possibility I could eat a little more so I could be just a little bit physically stronger, it is worth it. I don’t even remember what it’s like to be able to meet a friend for lunch or not have to worry if I’ll be able to get home if I go for a walk. After so much pain and so many years of being so sick, even the possibility of improvement is a gift.
I am hopeful that with treatment and once recovery from the next surgery is complete I will be able to regain some physical strength and get back to playing the piano again in some capacity. My spirit and mind are so much stronger than my body has become and I know it will take time, but I have to have hope that some day I will be able to contribute again. I have spent my life in service to others which is what I believe I am meant to do, and have loved doing, but I have never asked for help and have reached a point where I truly am in need of assistance. I have medical bills from the past 16 years which I am trying to make payments on but with my current inability to work, the stress of making these payments is taking a serious toll on my health and well being and I am unable to seek out treatments I need such as vision therapy, medications, supplements, bodywork, physical therapy, IVs and counseling. I will also be responsible for paying part of the upcoming surgery bill. I am learning that asking for help is not a weakness but it is extremely difficult for me. I’ve been trying to write this for a few years now but felt like I needed to hide my weakness.
I dearly hope the ultimate outcome of this is that given time, and rest, and probably a lot of help both financially and emotionally, l will be able to once again play the piano for the schools or at least teach lessons. Music is a gift that is meant to be shared. My goal each day that I was working in Coos Bay and with every performance we gave, was that the music would touch the hearts and lives of the students and the audiences. It was an opportunity to share hope, joy, even sadness, and to genuinely offer these as gifts through music to the world. I cannot think of any greater gift.
Thank you for reading all of this. If you do not have financial resources to be able to contribute, I ask that you please try to appreciate the gifts you have. Go outside, breathe, feel the wind, really taste your food, smile at people. Especially the people who don’t smile back. I have learned finally, through all of this apparent suffering and pain that truly we are all the same. We are not alone. You are not alone. I am not alone.
The story is very complicated and long and I do not wish to elicit pity or make anyone sad. I have resisted telling it because I don’t want to need help or seem weak, but I do need help and I am physically too weak to keep going for much longer. I don’t even like the word “sick” and I am not a victim. Ultimately I am grateful for all of the pain and illness I have had to live with because now I can look back and know that I am truly not afraid to die. I have lived a good life. I have been kind and I have tried to live every day in gratitude for all the gifts I have been given. I am afraid, however, to keep living in a body that is not nearly as strong as my spirit and to feel like I can no longer contribute to the world in a positive way. The day has come when I am asking for help so I can hopefully have the resources to heal and once again play the piano.
My birth made medical history. October 10th, 1978 at Thomas Jefferson Hospital in Philadelphia. My Mother developed a 13 pound tumor 7 months into her pregnancy that was crushing me and killing us both. I suppose I came into this world stubborn and fighting to have survived that. Much later, when I began having mysterious health issues, I would find out that my Mom had been exposed to agent orange while pregnant with me living in the woods in Oregon. It is believed this caused the tumor and some of my subsequent health issues.
When I was 16 I left for college to study music and psychology with a full scholarship. I hoped to help people someday. During my first break from College I was a passenger in a car accident where I sustained severe whiplash damage to my jaw, neck, and back as well as a head injury. Apparently I should have been killed instantly. I was told I would never play the piano or the clarinet again. I refused to believe these things and went on to finish my degree in music performance, graduating with top music performance honors.
During this time however, I was in constant agonizing pain. I was seeing doctors, physical therapists, massage therapists and whoever else I could. I was doing this alone. I had also lost my visual memory, most of my depth perception and had to relearn how to use my eyes to read music. I could only practice the piano for a few minutes at a time but I didn’t want to tell anyone the real truth. That I couldn’t feel anything because it was too hard to live in my body anymore and I was ashamed.
My jaw was operated on twice while I was in school, with the surgeon saying it was “the worst case scenario” and I would likely never get much better. The doctors turned out to be right about that and I had to give up the clarinet. I learned during that time to live with pain. I put my own needs and feelings somewhere far inside and pushed myself until my body literally gave out. Something drove me to continue though. I think now, it was fear of seeming weak, of needing anyone. I had to prove I could still be who I thought I was supposed to be. Invincible? Worthy? Lovable? I learned that people are not to be trusted and that they would push me and use my abilities until there was nothing left. I didn’t know how to say no. I lost myself and my connection to music. I also refused to truly let anyone know how much I was suffering.
After a break from playing due to pain and exhaustion I agreed to accompany the choirs in the Coos Bay Schools starting in 2007. At first I was terrified walking into a classroom, but over time I learned ways to make the pain tolerable and truly came to love working with the students and watching them grow as musicians and people. I believe that the energy I received back from them and the joy of being involved with music again helped keep me alive. I worked there until 2 years ago when I was forced to resign due to my deteriorating health. During all of these years after college I was without medical insurance and continued to try and heal my body. I spent every dollar I had searching out new therapies, new doctors, and was then informed about the agent orange exposure and subsequent endocrine issues. My first surgery on my abdomen was in 2005. After years of searching, I was finally put on a treatment regimen that helped with the endometriosis and PCOS pain, but I had also been diagnosed years before with Fibromyalgia, Chronic Fatigue, Chronic Pain, Severe TMJ and a Traumatic Brain Injury. I had never fully recovered from the car accident and was living in a body I didn’t trust. My case was extremely complicated already and I was trying to live as best I could and appreciate each moment. I spent as much time as possible outside, connecting to nature. I still had this overwhelming drive to help make the world a little brighter. To contribute, no matter the cost to myself.
I even went to massage school in Ashland and opened a practice in Bandon so that I could help other people in pain. I felt like I had first hand knowledge of what it was like to be in pain and wanted to make some kind of difference in the lives of other people in a similar situation. This further weakened me. I eventually began having severe exhaustion, even more wide spread pain and gastrointestinal issues. About 8 years ago I started being unable to eat almost anything and lost weight and rapidly declined in strength and vitality. Today I weigh about 99 lbs. I’m 5’6”. Prior to this I could tell my body wasn’t functioning properly and had started seeking help. I had test after test to determine an underlying cause with no real answers. I had no insurance and spent everything I had on medical treatments to improve my condition. Due to pre-existing conditions I wasn’t able to get insurance until about 5 years ago when I committed to working full time for the school district. This still didn’t cover everything and the bills kept piling up.
In April of 2014 I had part of my small intestine removed and again with an emergency surgery in November of 2014. The following April I had my gallbladder removed. Last February, after multiple attempts at putting in a PICC line, using heparin locks and most of my veins being too scarred to use, I had surgery to put a port in my chest so I could receive IV fluids and nutrition. At this point I was not functioning. No one could explain what was going on. I didn’t have an obvious diagnosis for the gastrointestinal issues. I was put on disability and basically have been trying to maintain some quality of life since then. The combination of the car accident, agent orange exposure, and all of the surgeries has taken its toll. I have spent tens of thousands of dollars trying to “get better”. Right now I owe about $8,000 on credit cards from medical bills and $18,000 of medical bills I paid off with a loan against my home. I can’t make the payments anymore and the bills keep coming in. I was automatically placed on Medicare because of my disability and just found out I will be losing most of my Medicaid which was paying most of what Medicare does not. If this continues, I will lose everything.
I think, even more than the pain and being nauseous, sick and weak all the time, I miss being able to contribute. I still try to be strong and don’t often tell people these things, which leaves me isolated and alone. The truth is I don’t know from one day to the next how I will feel. Will I be up sick all night and not be able to walk? Will my legs be cramping so badly that I can’t even drive to the park? Do I need to go to the hospital? Again? If I black out again will I wake up? Do I need another imaging study? More radiation exposure? More pain medication? Why can’t I just fix this myself? Why? Am I too weak? Did I do something to deserve all of this? I need IV’s and help with the pain but I can’t afford it so I suffer in silence. It’s ugly. Truly ugly. Constant pain for 20 years changes a person. All the time I’ve lost in all of the surgeries scares me. I don’t want to have to share this but it is the reality of my physical body. A reality I am having trouble facing.
Now, I want to make a distinction. During all of these years there have been various people who questioned how I was still alive. I think there is something driving me still which I have to admit has kept me alive but has also kept me from asking for help before now. I felt like I had to do it alone. I can’t be weak. I don’t want to be a burden or really tell people how terrible I feel. I also feel like there is a deep, eternal part of me that is completely separate from all of this and that is the reason I am still here. I see so much beauty in the world. I smile at everyone even when I feel terrible, especially the people who don’t smile back. I try to be a source of light and kindness in the world. In every interaction, in everything I do, I try to radiate peace and light. This is all I am physically capable of for now, but I believe it is actually a huge gift. I am starting to truly believe that I can be loved and I didn’t deserve this stuff. Yes, it happened to me, but I am grateful. I am strong. A weaker person would not have survived and I know that without a doubt I am meant to share music again with this world. I am not a sad person and this is not a sad story. Maybe I’m just so stubborn that it took all of this for me to see how amazing life actually is and that we are ultimately all fighting our own battles but we don’t have to do it alone.
Last February, during a stay in the hospital, the surgeon discovered I have an extremely rare condition called celiac artery compression syndrome. The surgery is risky but I have decided to have it done here in Ashland this Fall. There is a chance it will not help at all and I will just be weaker coming out the other side. There could be complications, but I feel like if there is even the slightest possibility I could eat a little more so I could be just a little bit physically stronger, it is worth it. I don’t even remember what it’s like to be able to meet a friend for lunch or not have to worry if I’ll be able to get home if I go for a walk. After so much pain and so many years of being so sick, even the possibility of improvement is a gift.
I am hopeful that with treatment and once recovery from the next surgery is complete I will be able to regain some physical strength and get back to playing the piano again in some capacity. My spirit and mind are so much stronger than my body has become and I know it will take time, but I have to have hope that some day I will be able to contribute again. I have spent my life in service to others which is what I believe I am meant to do, and have loved doing, but I have never asked for help and have reached a point where I truly am in need of assistance. I have medical bills from the past 16 years which I am trying to make payments on but with my current inability to work, the stress of making these payments is taking a serious toll on my health and well being and I am unable to seek out treatments I need such as vision therapy, medications, supplements, bodywork, physical therapy, IVs and counseling. I will also be responsible for paying part of the upcoming surgery bill. I am learning that asking for help is not a weakness but it is extremely difficult for me. I’ve been trying to write this for a few years now but felt like I needed to hide my weakness.
I dearly hope the ultimate outcome of this is that given time, and rest, and probably a lot of help both financially and emotionally, l will be able to once again play the piano for the schools or at least teach lessons. Music is a gift that is meant to be shared. My goal each day that I was working in Coos Bay and with every performance we gave, was that the music would touch the hearts and lives of the students and the audiences. It was an opportunity to share hope, joy, even sadness, and to genuinely offer these as gifts through music to the world. I cannot think of any greater gift.
Thank you for reading all of this. If you do not have financial resources to be able to contribute, I ask that you please try to appreciate the gifts you have. Go outside, breathe, feel the wind, really taste your food, smile at people. Especially the people who don’t smile back. I have learned finally, through all of this apparent suffering and pain that truly we are all the same. We are not alone. You are not alone. I am not alone.
Organizer
Rachel Palen
Organizer
North Bend, OR
