Today started off bad. REALLY bad. Actually, things have been quite tough for a while, but I don't talk about it to great length anymore. I much prefer dealing with the tough stuff in private with my closest friends and family, laughing my way through it all. But sometimes, that just doesn't work.
I have been battling serious health issues for a while now. In 2003, I became very ill. No one knew why. My stomach was constantly upset and distended. I developed neuropathy in one of my legs and both hands. I had migraine headaches and seizures. My joints hurt constantly, I lost most of my hair and I was putting on weight for no apparent reason. Test after test was run, and when my doctors couldn't figure out what the problem was, I was labeled as a depressed hypochondriac. Depressed? Hell, yes! I had to quit my job as a fitness instructor and marketing director at the local YMCA. I couldn't sleep, and I was growing increasingly agitated because I didn't think my doctors were taking me seriously. It wasn't until late 2004, when my husband pretty much demanded that I go to Duke for a second opinion, that we made any headway. I told the doctors there that I thought I had celiac disease, an extreme intolerance to wheat gluten. They threw out every test that had been conducted up until that point and agreed NOT to review my past medical records, in order to not form a biased opinion of me or what was wrong with me. In less than one month, they were able to determine that I not only HAD celiac disease, but I had a very stealth and dangerous form of the disease. I had already begun eliminating wheat gluten from my diet, but a great deal of damage had been done to my body. Still, through the excellent care I received at Duke and diligent adherence to a gluten-free diet, my health began to improve.
During the time that all of this was going on, I was the primary caregiver for my great aunt, Alice. I adored her. When she became too frail to live on her own in the house where she was born in Asheville NC, I drove a U-Haul from my home in Salisbury (two hours away) and moved her here. I spent a great deal of time watching over her and physically caring for her over the next five years, even when I had to move her into an assisted living facility. When that happened, I was incensed at how her monthly income and life savings disappeared in no time. This little lady had given her entire career to her country - first the Navy and then the Department of Social Security in Washington, DC. But she ended up with nothing to show for it. No one told me that she was eligible for a veteran's benefit called Aid & Attendance - none of the facilities where she lived, no one in the Department of Social Services and no one at the Veteran's Administration. It wasn't until she passed away in 2005 that I found out she had been eligible for benefits for nearly 20 years. But it was too late to apply then. She died penniless, after spending her entire life giving to others - her church, her family, whoever needed help. I was furious, and determined that no one else I knew was going to go through this.
I went back to work six months after Alice died, as a Marketing Director at an assisted living facility. The only way I could make sense of what had happened to her was to make sure it didn't happen to anyone else. Little did I know that my tenure in long term care would render so many blessings. It was tough work. The hours were very long and the pay didn't begin to compensate for the time I spent away from my family. But every single day I spent in that facility, every exhausting hour...was a true gift. I got to help people. I got to make a difference. I got to hug distraught family members, help them place their loved ones in appropriate care and find ways to help fund that care. When their family members became too ill to continue on, I got to help them through the death process. I saw many a miracle during that time, and I learned lessons that nothing but the experience itself could teach. I was giving back, and despite the fact that it was hurting me physically - I thrived on the satisfaction of helping people. I fell in love with my residents and they loved me back unconditionally. I couldn't help my aunt anymore, but because of what I had gone through with her, I could help other people like her. I could help their families. And I LOVED that feeling. It was a true gift.
In 2009, I ended up in the hospital for nearly two months with a deadly staph infection in my leg. (That is a story in and of itself, but we won't go into it here.) It was a humbling time for me, as I laid day after day in a hospital bed, hooked up to tubes, IV lines and a wound vac. I had three surgeries and came close to dying one night. I was told afterwards that I never should have walked out of that hospital, much less with my leg still intact. But I did. I found a way to fight through the worst of it - because there were people praying for me, supporting my family, giving up vacation days so that I wouldn't have to miss a day of pay, sending flowers, calling, and making me laugh. I had never felt more surrounded by love than I did at that time. It was a harrowing experience, but somehow, I knew it was happening for a reason. Boy, was I ever right...
I've heard it said that going through adversity prepares you for other hardships. Nothing could be more accurate in my case. One month after I was discharged, I was back in the same room at the same hospital - with our son. He had an emergency appendectomy one week before his high school graduation. Four months after that, he collapsed during a basketball practice at college and we had him back in that same hospital to have a mass removed from his nasal cavity, which fortunately turned out to be benign. Three days before Christmas that same year, my husband suffered a heart attack in our living room while we were all together. Two months after that, our son had a career ending surgery on his shoulder. Four months later, my husband suffered a second heart attack. And six months after that - the week before Christmas - I found a very suspicious looking mole in the center of my back. It was removed, biopsied and the results came back on January 6, 2011. Malignant melanoma. I had surgery on February 15, 2011. I refused the conventional treatment at the time, Interferon, because it had a long-standing history of weakening the immune system and didn't have a success rate that justified a year's worth of extreme side effects. My immune system was already compromised, and I certainly didn't need to further complicate that issue. So, I began to search for other options. I ended up contacting a cancer research group in Washington, DC who referred me to two different area physicians. I also consulted with a childhood friend who is an oncologist. And in the summer of 2011, I began preparing for an alternative treatment. Just as I was about to begin, I lost my job and our house was foreclosed on. Astronomical medical bills had made it very difficult to keep up with our financial obligations, and my job was killing me - literally. We had to move out of the house we'd raised our kids in for the past ten years. They had to drop out of college and move home. At the end of 2011, I started feeling really bad. In early 2012, I found another suspicious mole which also turned out to be melanoma. I had been traveling to DC for months to see a variety of specialists and get treatment. A close friend there took care of me. He had a bad fall and was unable to care for himself or me for the first part of the year, so I was pretty much on my own. My husband was desperately trying to make money and keep our heads above water, so he couldn't accompany me on my trips. Then, my autoimmune issues started flaring and interfering with treatments. And if all this wasn't enough...my care situation changed dramatically during the summer and fall of 2012. I was on steroids to reduce inflammation in my joints, which depressed me and caused me to have uncontrollable anger outbursts on more than one occasion. My health was not improving, and I was fighting to stay positive. The ONLY thing that kept me sane was my ability to find humor in just about anything - including my own predicament. That, and the Facebook cancer support group I co-founded with a friend, called Curing Cancer with a Smile. Although I didn't realize it at the time, it was one of the best things I have ever done. As I felt my life spiraling out of control, I suddenly found a purpose much bigger than me or my own problems. By giving me the opportunity to focus less on my own issues and more on those of other cancer survivors and caregivers, CCWAS saved my life.
It is important to mention at this juncture just how CCWAS came to fruition. A group of amazing high school friends formed their own support group on Facebook to support my family and I. It is called Rams to the Rescue. A high school friend who is a member of that group was online commenting on a site called Mike's Cancer Fight, and I happened to see his post. I was intrigued and went to the page. I joined the group and began reading about Mike Terrill's incredible struggles with end-stage brain cancer. He was "balls to the walls" brutally honest about what he was going through. And he was mad as hell. I decided to reach out to him, we chatted, shared stories, frustrations and became instant friends. He saw what my friends were doing for me through RTR, and told me that he wanted to start a group to help cancer patients - a place where they could get information, vent and find support. I agreed to help. And Curing Cancer with a Smile was born. Mike was, and still is, dying. But CCWAS gave him a new purpose, a reason to continue fighting. We noticed right away that we were actually helping people...lots of people. And we LOVED it. Today, we are 1600+ members strong. And on my very worst days, like today, CCWAS is my saving grace.
Three months ago, as I was in the midst of a very challenging time medically, my husband had yet another heart incident that required surgery. These two amazing groups and many other wonderful people rallied around us in support. Mike became my most vocal advocate - even on the days when he was screaming in pain - and I continued to support him faithfully through his trials as well. We jumped through hoops for each other and every one of our members. In the past year, we have witnessed the beauty of mankind - the human spirit in its finest hour, every time one of our members has been down and people in the group have rallied to support that person. When one of our original members lost her husband to cancer at the end of last month, the outpouring of support from CCWAS was just incredible - most of it from people who have never laid eyes on her. I stayed up all night with her on the phone the night he passed, and Mike took over for me the next morning when I needed to rest. Even though his own condition is declining fast, he is on the page encouraging whoever needs to be supported each and every day. He and I check in with each other several times a day to support each other and discuss who in the group needs help. New members are joining daily to find and give support. Mike and I both know he's at the end of his journey; he makes no bones about that. My own journey is uncertain; I make no bones about that either. But the ability to "give back" has become our primary focus - a greater gift that either one of us ever envisioned.
Which leads me back to my very bad day. Things are pretty bad financially. My cancer battle is nowhere close to being over; I have yet another surgery scheduled in mid-July. But I'm not as worried as most people might think I'd be. I know we're going to be ok. I have faith, a great support network and I can still laugh. That, in and of itself, is a blessing. The group that I have put my heart and soul into, the amazing friends who have continued to give selflessly, the awesome charity organization called Eblen Charities that kept us afloat for months, and the countless prayers and loving gestures that come to us daily keep me strong. I believe in the good of the human spirit. I believe that each of us has within us the ability to make a difference in some way. I have found a way to do that myself in my darkest hour; it is my mission to take that to a whole new level when I get out of this situation. And I WILL get out. I am going through all of this for a reason. For, if I had not experienced this, I could never really understand the plight of those who suffer devastating financial loss due to serious illnesses. It is my purpose in life to help those people - for the rest of my life. And even though I can't do it financially right now, I can do SOMETHING. I am inspired by those who rally together to give what little they have and collectively make a BIG difference. I am a recipient of that incredible generosity. Today, when I logged onto the page I co-founded to help OTHERS, what do you think I saw? People I don't even know were rallying to help ME. I don't at all like that they're doing this; I don't want to be in this position. I am very proud, I'm not at all comfortable receiving handouts and I HATE asking for help. But part of the humbling lesson I'm learning is to accept help when it's offered to me, and to show my gratitude by helping other people.
This is where I am right now. I have little to give materially, but I can still give a lot. I can always do or say something to make a difference. And when the light at the end of the tunnel ceases to be a freight train, I will do great things because of what I've been through and what has been done for me. I will "Pay it Forward". NOTHING on this earth could ever give me more satisfaction.
I have been battling serious health issues for a while now. In 2003, I became very ill. No one knew why. My stomach was constantly upset and distended. I developed neuropathy in one of my legs and both hands. I had migraine headaches and seizures. My joints hurt constantly, I lost most of my hair and I was putting on weight for no apparent reason. Test after test was run, and when my doctors couldn't figure out what the problem was, I was labeled as a depressed hypochondriac. Depressed? Hell, yes! I had to quit my job as a fitness instructor and marketing director at the local YMCA. I couldn't sleep, and I was growing increasingly agitated because I didn't think my doctors were taking me seriously. It wasn't until late 2004, when my husband pretty much demanded that I go to Duke for a second opinion, that we made any headway. I told the doctors there that I thought I had celiac disease, an extreme intolerance to wheat gluten. They threw out every test that had been conducted up until that point and agreed NOT to review my past medical records, in order to not form a biased opinion of me or what was wrong with me. In less than one month, they were able to determine that I not only HAD celiac disease, but I had a very stealth and dangerous form of the disease. I had already begun eliminating wheat gluten from my diet, but a great deal of damage had been done to my body. Still, through the excellent care I received at Duke and diligent adherence to a gluten-free diet, my health began to improve.
During the time that all of this was going on, I was the primary caregiver for my great aunt, Alice. I adored her. When she became too frail to live on her own in the house where she was born in Asheville NC, I drove a U-Haul from my home in Salisbury (two hours away) and moved her here. I spent a great deal of time watching over her and physically caring for her over the next five years, even when I had to move her into an assisted living facility. When that happened, I was incensed at how her monthly income and life savings disappeared in no time. This little lady had given her entire career to her country - first the Navy and then the Department of Social Security in Washington, DC. But she ended up with nothing to show for it. No one told me that she was eligible for a veteran's benefit called Aid & Attendance - none of the facilities where she lived, no one in the Department of Social Services and no one at the Veteran's Administration. It wasn't until she passed away in 2005 that I found out she had been eligible for benefits for nearly 20 years. But it was too late to apply then. She died penniless, after spending her entire life giving to others - her church, her family, whoever needed help. I was furious, and determined that no one else I knew was going to go through this.
I went back to work six months after Alice died, as a Marketing Director at an assisted living facility. The only way I could make sense of what had happened to her was to make sure it didn't happen to anyone else. Little did I know that my tenure in long term care would render so many blessings. It was tough work. The hours were very long and the pay didn't begin to compensate for the time I spent away from my family. But every single day I spent in that facility, every exhausting hour...was a true gift. I got to help people. I got to make a difference. I got to hug distraught family members, help them place their loved ones in appropriate care and find ways to help fund that care. When their family members became too ill to continue on, I got to help them through the death process. I saw many a miracle during that time, and I learned lessons that nothing but the experience itself could teach. I was giving back, and despite the fact that it was hurting me physically - I thrived on the satisfaction of helping people. I fell in love with my residents and they loved me back unconditionally. I couldn't help my aunt anymore, but because of what I had gone through with her, I could help other people like her. I could help their families. And I LOVED that feeling. It was a true gift.
In 2009, I ended up in the hospital for nearly two months with a deadly staph infection in my leg. (That is a story in and of itself, but we won't go into it here.) It was a humbling time for me, as I laid day after day in a hospital bed, hooked up to tubes, IV lines and a wound vac. I had three surgeries and came close to dying one night. I was told afterwards that I never should have walked out of that hospital, much less with my leg still intact. But I did. I found a way to fight through the worst of it - because there were people praying for me, supporting my family, giving up vacation days so that I wouldn't have to miss a day of pay, sending flowers, calling, and making me laugh. I had never felt more surrounded by love than I did at that time. It was a harrowing experience, but somehow, I knew it was happening for a reason. Boy, was I ever right...
I've heard it said that going through adversity prepares you for other hardships. Nothing could be more accurate in my case. One month after I was discharged, I was back in the same room at the same hospital - with our son. He had an emergency appendectomy one week before his high school graduation. Four months after that, he collapsed during a basketball practice at college and we had him back in that same hospital to have a mass removed from his nasal cavity, which fortunately turned out to be benign. Three days before Christmas that same year, my husband suffered a heart attack in our living room while we were all together. Two months after that, our son had a career ending surgery on his shoulder. Four months later, my husband suffered a second heart attack. And six months after that - the week before Christmas - I found a very suspicious looking mole in the center of my back. It was removed, biopsied and the results came back on January 6, 2011. Malignant melanoma. I had surgery on February 15, 2011. I refused the conventional treatment at the time, Interferon, because it had a long-standing history of weakening the immune system and didn't have a success rate that justified a year's worth of extreme side effects. My immune system was already compromised, and I certainly didn't need to further complicate that issue. So, I began to search for other options. I ended up contacting a cancer research group in Washington, DC who referred me to two different area physicians. I also consulted with a childhood friend who is an oncologist. And in the summer of 2011, I began preparing for an alternative treatment. Just as I was about to begin, I lost my job and our house was foreclosed on. Astronomical medical bills had made it very difficult to keep up with our financial obligations, and my job was killing me - literally. We had to move out of the house we'd raised our kids in for the past ten years. They had to drop out of college and move home. At the end of 2011, I started feeling really bad. In early 2012, I found another suspicious mole which also turned out to be melanoma. I had been traveling to DC for months to see a variety of specialists and get treatment. A close friend there took care of me. He had a bad fall and was unable to care for himself or me for the first part of the year, so I was pretty much on my own. My husband was desperately trying to make money and keep our heads above water, so he couldn't accompany me on my trips. Then, my autoimmune issues started flaring and interfering with treatments. And if all this wasn't enough...my care situation changed dramatically during the summer and fall of 2012. I was on steroids to reduce inflammation in my joints, which depressed me and caused me to have uncontrollable anger outbursts on more than one occasion. My health was not improving, and I was fighting to stay positive. The ONLY thing that kept me sane was my ability to find humor in just about anything - including my own predicament. That, and the Facebook cancer support group I co-founded with a friend, called Curing Cancer with a Smile. Although I didn't realize it at the time, it was one of the best things I have ever done. As I felt my life spiraling out of control, I suddenly found a purpose much bigger than me or my own problems. By giving me the opportunity to focus less on my own issues and more on those of other cancer survivors and caregivers, CCWAS saved my life.
It is important to mention at this juncture just how CCWAS came to fruition. A group of amazing high school friends formed their own support group on Facebook to support my family and I. It is called Rams to the Rescue. A high school friend who is a member of that group was online commenting on a site called Mike's Cancer Fight, and I happened to see his post. I was intrigued and went to the page. I joined the group and began reading about Mike Terrill's incredible struggles with end-stage brain cancer. He was "balls to the walls" brutally honest about what he was going through. And he was mad as hell. I decided to reach out to him, we chatted, shared stories, frustrations and became instant friends. He saw what my friends were doing for me through RTR, and told me that he wanted to start a group to help cancer patients - a place where they could get information, vent and find support. I agreed to help. And Curing Cancer with a Smile was born. Mike was, and still is, dying. But CCWAS gave him a new purpose, a reason to continue fighting. We noticed right away that we were actually helping people...lots of people. And we LOVED it. Today, we are 1600+ members strong. And on my very worst days, like today, CCWAS is my saving grace.
Three months ago, as I was in the midst of a very challenging time medically, my husband had yet another heart incident that required surgery. These two amazing groups and many other wonderful people rallied around us in support. Mike became my most vocal advocate - even on the days when he was screaming in pain - and I continued to support him faithfully through his trials as well. We jumped through hoops for each other and every one of our members. In the past year, we have witnessed the beauty of mankind - the human spirit in its finest hour, every time one of our members has been down and people in the group have rallied to support that person. When one of our original members lost her husband to cancer at the end of last month, the outpouring of support from CCWAS was just incredible - most of it from people who have never laid eyes on her. I stayed up all night with her on the phone the night he passed, and Mike took over for me the next morning when I needed to rest. Even though his own condition is declining fast, he is on the page encouraging whoever needs to be supported each and every day. He and I check in with each other several times a day to support each other and discuss who in the group needs help. New members are joining daily to find and give support. Mike and I both know he's at the end of his journey; he makes no bones about that. My own journey is uncertain; I make no bones about that either. But the ability to "give back" has become our primary focus - a greater gift that either one of us ever envisioned.
Which leads me back to my very bad day. Things are pretty bad financially. My cancer battle is nowhere close to being over; I have yet another surgery scheduled in mid-July. But I'm not as worried as most people might think I'd be. I know we're going to be ok. I have faith, a great support network and I can still laugh. That, in and of itself, is a blessing. The group that I have put my heart and soul into, the amazing friends who have continued to give selflessly, the awesome charity organization called Eblen Charities that kept us afloat for months, and the countless prayers and loving gestures that come to us daily keep me strong. I believe in the good of the human spirit. I believe that each of us has within us the ability to make a difference in some way. I have found a way to do that myself in my darkest hour; it is my mission to take that to a whole new level when I get out of this situation. And I WILL get out. I am going through all of this for a reason. For, if I had not experienced this, I could never really understand the plight of those who suffer devastating financial loss due to serious illnesses. It is my purpose in life to help those people - for the rest of my life. And even though I can't do it financially right now, I can do SOMETHING. I am inspired by those who rally together to give what little they have and collectively make a BIG difference. I am a recipient of that incredible generosity. Today, when I logged onto the page I co-founded to help OTHERS, what do you think I saw? People I don't even know were rallying to help ME. I don't at all like that they're doing this; I don't want to be in this position. I am very proud, I'm not at all comfortable receiving handouts and I HATE asking for help. But part of the humbling lesson I'm learning is to accept help when it's offered to me, and to show my gratitude by helping other people.
This is where I am right now. I have little to give materially, but I can still give a lot. I can always do or say something to make a difference. And when the light at the end of the tunnel ceases to be a freight train, I will do great things because of what I've been through and what has been done for me. I will "Pay it Forward". NOTHING on this earth could ever give me more satisfaction.
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