I will never forget the day I learned I had cancer and the day I learned of my treatment plan. I remember sitting in the doctor's office hearing the word cancer and learning I would need chemotherapy. My initial reaction was, in hindsight, ridiculous. When the doctor told me I was going to need to have chemotherapy I heard, "your hair is going to fall out." I must have asked the doctor ten times if I asked him once, "so, my hair is going to fall out?" I felt as if I was having an out of body experience, everything seemed so foreign and surreal. Cancer is something that happened to other people, not something that happened to me. I suddenly felt as if my life was no longer mine.
Let me back up for just a moment and let you know where I was in my life when I got diagnosed.
Right before I got diagnosed with cancer I thought my life was perfect. I was active in church, had two healthy children, coached cheerleading at my former high school, and my husband had a great job that allowed me to be a stay at home mom. Really, could life have been more perfect?
(December 1996 - January 1997) It started as severe pain in my right thigh and then worked its way to weakness. On the advice of the trainer I went to see an orthopedic doctor. After an examination and x-ray I was diagnosed with an adductor strain.
(Hindsight clarification: in my heart I thought it was cancer. I asked the doctor. "Is it cancer?" He
responded, "no." I wanted to believe him so I did not push the issue. Please make sure you push the
issue if you feel in your heart something is wrong.)
My treatment plan for the adductor strain was physical therapy. I began physical therapy. During my treatment, I started to have new symptoms, symptoms that indicated something was just not right. Upon the advice of my physical therapist, I returned to the orthopedic doctor for a follow-up. After my examination he informed me that during my physical therapy I injured my abductor. I returned to physical therapy and continued with it until my insurance capped out.
It is important to pause for a moment so that I may say, I do not blame the physical therapist for what happened due to the treatment I received. I do however blame the doctor for not diagnosing me properly and I blame myself for being a coward and not pushing the issue of possible cancer. I have forgiven the doctor and myself but the blame will always remain.
My physical therapist, no stranger to the deficiencies of insurance, advised me to continue my exercises at home. Somewhere between January and July my tumor had grown from a very small gray circle on an x-ray to a mass so large it was visible to the naked eye. I went to my family doctor to see what he recommended, his advice, go straight to the emergency room. Well, let me just tell you, I am not an emergency room type of girl. So, I chose to have an MRI a few days later. July 25, 1998 my twenty-eighth birthday and my son's second birthday I went for my two hour MRI that would forever change my life.
Now, I am not going to bore you with all of the icky chemotherapy details nor will I go into great detail about my second opinions and such. What I will tell you is that chemotherapy was not fun, it made me so very sick, I was in bed more days than I was out of bed, and it took every piece of hair on my body. I got through that time by God's grace, an amazing pastor, amazing family, and amazing friends. The love that I felt and the care that I felt pulled me through the darkest moments of my life. There are not enough words of gratitude in this world for me to express how grateful I am to all who where with me on my journey.
My diagnosis: cancer in my right thigh with nodules that had spread to my lungs. I had my initial and follow-up treatment at RUSH, my second opinion and treatment at University of Chicago Hospital, and a full course of radiation at Fermi Lab. After my second opinion and treatment at University of Chicago and my radiation treatment at Fermi Lab, I went back to RUSH. Why did I go to so many places? Well, to be honest, I didn't like what they had to tell me at RUSH so I went to University of Chicago. When they told me there was nothing more they could do for me, I went to Fermi Lab. What did RUSH say to me that I didn't want to hear? They told me that my tumor was inoperable and that I would have to have a hip disarticulation. I did not believe that was they only option for me so I sought out other options. I felt that they could always take my leg off but that they could not put it back on. So, for five years I dealt with a leg that was so riddled with illness it affected my quality of life.
(January 1999) I finished my treatment at Fermi Lab. Now I had to wait and see if the radiation would shrink my tumor. Throughout this time I had a moment of healing, I had regained strength in my leg and was able to do things I hadn't done in a long time. I rode a bike, skipped, ran, and lived pain free. Unfortunately this was very short lived. By the end of 1999 I was in an AFO/Ankle Foot Orthosis and walking with a cane and then a crutch. My leg began to show signs of distress. I went to an open wound doctor and followed their treatment plan. I went to my general doctor and they didn't know what to do for me. After many doctor visits and no answers I just stopped going and hoped that the issue would resolve itself. My leg of course did not get better on its own and continued to get worse. It was full of edema and was draining through my pores. I will never forget the day I could no longer get my brace to fit, September 11, 2001. From that day forward my life, as well as the lives of many would never be the same.
(September 1, 2002) This was the day of my brother's wedding. We were all in the wedding, it was a day full of excitement and sadly the day my leg exploded. That is correct, my leg exploded. Again, I do not want to get into all the icky details but I will share that it exploded because it had become so full of dead, diseased tissue it had no way else to rid itself of it. I carried on to my brother's wedding and ended up having a great time. However, my leg continued to get worse. I had no idea what to do or where to go since no doctor seemed to be able to help me. So, I delayed going to the doctor for two months. Writing this it seems foolish that I waited that long but it made perfect sense at the time. I finally decided to go to Fermi Lab in hopes that they had seen something like this before. Let me assure you that I was the first person they had seen with this, they were shocked that I was still alive and ordered me to go directly to the emergency room. As I have stated previously, I am not an emergency room type of girl. I threw a fit that would make any two year old proud. (My poor mom was with me and had the great task of maintaining her dignity while trying to get her grown-up "baby" into the car and off to the emergency room.) She took me to the emergency room at RUSH and I was met there by my brother and husband. Now I knew this was really serious.
**Pausing for a point of interest. In May of 2000 I had a tumor removed from my pelvis by an amazing surgeon. He truly saved my life back then and therefore, I insisted he be the one I see in the emergency room. He was a general oncology surgeon at the time and not an orthopedic surgeon but I didn't care!
Once my surgeon saw me in the emergency room he scolded me for not calling him sooner and then in a way only he could get away with informed me that I was going to lose my leg. If those words had come from anyone else they would not have been accepted. However, there was something so comforting in knowing he would be the one to do my surgery and something so honest in his words, I just could not argue. My only request was to prolong the removal of my leg so that I could still have two legs for my daughter's birthday. So, he did a debriding surgery so that I could still have two legs for my daughter's birthday. Again, now I see how silly this was but at the time it made perfect sense. So, for two weeks I lived by packing my leg with gauze that had been soaked in a bleach saline solution three times a day. I was also on so many pain killers that I was barely awake. Details of those two weeks are very fuzzy.
(November 25, 2002) They day I lost my leg. I was admitted on a Friday so that I could receive IV antibiotics. I was visited by many friends and family. My mom was so kind, she stayed with me in my hospital room for the duration of my hospital stay. The night before my surgery after my friends left, my mom got in bed with me and we cried. It was a very scary moment for both of us and in some ways I think more so for her. The day of my surgery and the day after are a blur to me. The third day however, is very clear. That was the day I woke up got all my surgical tubes removed and walked to the bathroom for the first time. No more pain and no longer did a dead leg drag behind me. I felt so free and healthy. It was a day of great relief. Until I let my head get the best of me. Now that my "medical" problem had been removed I had a new worry, my physical appearance was now forever altered. I was afraid that my friends would not want to be seen with me and that my children would be afraid of me. A fear my husband quickly squashed. He snapped me out of my pity party and set me on the right track. I will never forget his words and I can never thank him enough for getting my head back in the game of life. I was expected to be in the hospital for two weeks and then go to rehab for a week or more to recover from my amputation; instead, I went home on Sunday (one week and two days after being admitted) and had a home nurse visit once a week. It was nothing short of miraculous. That first day I was home and the first time my children saw me with one leg was the last difficult hurdle. They handled it with such a grown-up perspective and did not show any fear I could not have asked God to bless me with better kids.
I had a ways to go until I was physically healed but I had done it, I by the grace of God, love of my family and friends, along with the skill of an amazing surgeon and oncologists, beat cancer!
Let me back up for just a moment and let you know where I was in my life when I got diagnosed.
Right before I got diagnosed with cancer I thought my life was perfect. I was active in church, had two healthy children, coached cheerleading at my former high school, and my husband had a great job that allowed me to be a stay at home mom. Really, could life have been more perfect?
(December 1996 - January 1997) It started as severe pain in my right thigh and then worked its way to weakness. On the advice of the trainer I went to see an orthopedic doctor. After an examination and x-ray I was diagnosed with an adductor strain.
(Hindsight clarification: in my heart I thought it was cancer. I asked the doctor. "Is it cancer?" He
responded, "no." I wanted to believe him so I did not push the issue. Please make sure you push the
issue if you feel in your heart something is wrong.)
My treatment plan for the adductor strain was physical therapy. I began physical therapy. During my treatment, I started to have new symptoms, symptoms that indicated something was just not right. Upon the advice of my physical therapist, I returned to the orthopedic doctor for a follow-up. After my examination he informed me that during my physical therapy I injured my abductor. I returned to physical therapy and continued with it until my insurance capped out.
It is important to pause for a moment so that I may say, I do not blame the physical therapist for what happened due to the treatment I received. I do however blame the doctor for not diagnosing me properly and I blame myself for being a coward and not pushing the issue of possible cancer. I have forgiven the doctor and myself but the blame will always remain.
My physical therapist, no stranger to the deficiencies of insurance, advised me to continue my exercises at home. Somewhere between January and July my tumor had grown from a very small gray circle on an x-ray to a mass so large it was visible to the naked eye. I went to my family doctor to see what he recommended, his advice, go straight to the emergency room. Well, let me just tell you, I am not an emergency room type of girl. So, I chose to have an MRI a few days later. July 25, 1998 my twenty-eighth birthday and my son's second birthday I went for my two hour MRI that would forever change my life.
Now, I am not going to bore you with all of the icky chemotherapy details nor will I go into great detail about my second opinions and such. What I will tell you is that chemotherapy was not fun, it made me so very sick, I was in bed more days than I was out of bed, and it took every piece of hair on my body. I got through that time by God's grace, an amazing pastor, amazing family, and amazing friends. The love that I felt and the care that I felt pulled me through the darkest moments of my life. There are not enough words of gratitude in this world for me to express how grateful I am to all who where with me on my journey.
My diagnosis: cancer in my right thigh with nodules that had spread to my lungs. I had my initial and follow-up treatment at RUSH, my second opinion and treatment at University of Chicago Hospital, and a full course of radiation at Fermi Lab. After my second opinion and treatment at University of Chicago and my radiation treatment at Fermi Lab, I went back to RUSH. Why did I go to so many places? Well, to be honest, I didn't like what they had to tell me at RUSH so I went to University of Chicago. When they told me there was nothing more they could do for me, I went to Fermi Lab. What did RUSH say to me that I didn't want to hear? They told me that my tumor was inoperable and that I would have to have a hip disarticulation. I did not believe that was they only option for me so I sought out other options. I felt that they could always take my leg off but that they could not put it back on. So, for five years I dealt with a leg that was so riddled with illness it affected my quality of life.
(January 1999) I finished my treatment at Fermi Lab. Now I had to wait and see if the radiation would shrink my tumor. Throughout this time I had a moment of healing, I had regained strength in my leg and was able to do things I hadn't done in a long time. I rode a bike, skipped, ran, and lived pain free. Unfortunately this was very short lived. By the end of 1999 I was in an AFO/Ankle Foot Orthosis and walking with a cane and then a crutch. My leg began to show signs of distress. I went to an open wound doctor and followed their treatment plan. I went to my general doctor and they didn't know what to do for me. After many doctor visits and no answers I just stopped going and hoped that the issue would resolve itself. My leg of course did not get better on its own and continued to get worse. It was full of edema and was draining through my pores. I will never forget the day I could no longer get my brace to fit, September 11, 2001. From that day forward my life, as well as the lives of many would never be the same.
(September 1, 2002) This was the day of my brother's wedding. We were all in the wedding, it was a day full of excitement and sadly the day my leg exploded. That is correct, my leg exploded. Again, I do not want to get into all the icky details but I will share that it exploded because it had become so full of dead, diseased tissue it had no way else to rid itself of it. I carried on to my brother's wedding and ended up having a great time. However, my leg continued to get worse. I had no idea what to do or where to go since no doctor seemed to be able to help me. So, I delayed going to the doctor for two months. Writing this it seems foolish that I waited that long but it made perfect sense at the time. I finally decided to go to Fermi Lab in hopes that they had seen something like this before. Let me assure you that I was the first person they had seen with this, they were shocked that I was still alive and ordered me to go directly to the emergency room. As I have stated previously, I am not an emergency room type of girl. I threw a fit that would make any two year old proud. (My poor mom was with me and had the great task of maintaining her dignity while trying to get her grown-up "baby" into the car and off to the emergency room.) She took me to the emergency room at RUSH and I was met there by my brother and husband. Now I knew this was really serious.
**Pausing for a point of interest. In May of 2000 I had a tumor removed from my pelvis by an amazing surgeon. He truly saved my life back then and therefore, I insisted he be the one I see in the emergency room. He was a general oncology surgeon at the time and not an orthopedic surgeon but I didn't care!
Once my surgeon saw me in the emergency room he scolded me for not calling him sooner and then in a way only he could get away with informed me that I was going to lose my leg. If those words had come from anyone else they would not have been accepted. However, there was something so comforting in knowing he would be the one to do my surgery and something so honest in his words, I just could not argue. My only request was to prolong the removal of my leg so that I could still have two legs for my daughter's birthday. So, he did a debriding surgery so that I could still have two legs for my daughter's birthday. Again, now I see how silly this was but at the time it made perfect sense. So, for two weeks I lived by packing my leg with gauze that had been soaked in a bleach saline solution three times a day. I was also on so many pain killers that I was barely awake. Details of those two weeks are very fuzzy.
(November 25, 2002) They day I lost my leg. I was admitted on a Friday so that I could receive IV antibiotics. I was visited by many friends and family. My mom was so kind, she stayed with me in my hospital room for the duration of my hospital stay. The night before my surgery after my friends left, my mom got in bed with me and we cried. It was a very scary moment for both of us and in some ways I think more so for her. The day of my surgery and the day after are a blur to me. The third day however, is very clear. That was the day I woke up got all my surgical tubes removed and walked to the bathroom for the first time. No more pain and no longer did a dead leg drag behind me. I felt so free and healthy. It was a day of great relief. Until I let my head get the best of me. Now that my "medical" problem had been removed I had a new worry, my physical appearance was now forever altered. I was afraid that my friends would not want to be seen with me and that my children would be afraid of me. A fear my husband quickly squashed. He snapped me out of my pity party and set me on the right track. I will never forget his words and I can never thank him enough for getting my head back in the game of life. I was expected to be in the hospital for two weeks and then go to rehab for a week or more to recover from my amputation; instead, I went home on Sunday (one week and two days after being admitted) and had a home nurse visit once a week. It was nothing short of miraculous. That first day I was home and the first time my children saw me with one leg was the last difficult hurdle. They handled it with such a grown-up perspective and did not show any fear I could not have asked God to bless me with better kids.
I had a ways to go until I was physically healed but I had done it, I by the grace of God, love of my family and friends, along with the skill of an amazing surgeon and oncologists, beat cancer!