It's not the Cancer, it's treatment
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It's not the Cancer that gets you, it's the treatment
Hello. My name is Glenn Schumacher and I had Cancer. This has left us in dire economic condition. Please help!
I was diagnosed on August 9, 2006 with a Squamous Cell cancer on the right base of my tongue. My reaction was, “So, how quickly can we get rid of this thing?” It turned out that the answer was, “seven weeks.” As in seven weeks of radiation treatments five times a week and four or five weeks of relatively low dose chemo therapy twice a week. Heck, that didn't sound so bad. I just sort of ignored the fact that I didn't have any health insurance.
The low dose chemo meant that I would keep my hair. Then the doctor explained that some people kept eating throughout the treatments so they didn't need a feeding tube. Well, I just knew that I was in that group. So, on Monday of the last week of August 2006 I started my battle against cancer. I'll skip all the unpleasant details except to say that by the first week of October I knew that I was in the “other” group. The one that desperately needed a feeding tube. But it was only going to be a temporary measure and it sure beat dying from dehydration (and I also couldn't swallow my pain medication!). Things progressed from there until, in late October, it was over. I had lost 40 pounds, couldn't swallow, could barely talk for the pain, but, as my doctors liked to remind me, I was alive.
I was so alive, in fact, that my beautiful wife, Dawn, and I hopped on a plane in early January 2007 and flew to Chicago to surprise my Dad on his 80th birthday. I was still tube feeding but felt pretty good. Here's a picture from two years earlier and one from Dad's party.
Little did I know that the fun was about to begin. Less than a week after the birthday party I was in the hospital for the (planned) removal of the lymph nodes on the right side of my neck. The doctor explained that this was a precaution in case the cancer had spread. Next, after I healed from the surgery, I started procedures to reopen my throat. These went on about every three weeks until the last week of April when it was discovered that I had developed a rather nasty bone infection in my neck. The side effects of cancer treatments had begun.
The infection lead to a Tracheotomy (so that I could keep breathing) and the permanent bending of my head forward and the pretty complete stiffening of my neck in that position. I can't raise my head to even straight, let alone look up at the sky. Nor can I turn my head either right or left more than about an inch. Of course, the infection also ended any hope I had that I would soon be sitting down to a nice grilled burger any time soon. Or, as it's turned out, ever. I haven't eaten or drunk anything since April, 2007. The good news was that I only needed the trach for eleven months. It was removed in June of 2008. But wait, there's more.
Radiation treatments for head and neck cancers, or as I like to call them,”The gift that keeps on giving,” have the nasty habit of causing side effects well into the future. So next, I developed what's called Radiation Induced Fibrosis, which is a fancy way of saying that my neck and upper shoulder muscles have turned into hard as rock scar tissue. Things were going along pretty well from 2008 until 2013 with only minor skirmishes, but then that gift decided to give some more.
I had noticed early on that sometimes when I would get up from a chair too quickly that I'd get light headed. Well, in 2013 it got much worse and I started to fall down when I got up. Not right away, mind you. No, I'd get 15 steps toward the bathroom and wham, my leg would just collapse and down I'd go. Or there was the time when I bent down to get something from the dishwasher and proceeded to fall right in. The dishwasher door is still not right. Thus began the trips to the Vascular Surgeon, two doctors of Neurology and even two Neurosurgeons. It turned out that the radiation had given me a condition that causes my blood pressure to fall whenever a stand up. My blood pressure falls and then so do I.
Then the fibrosis started to advance again. It started back up my neck, only now it was on the inside. I started having a hard time breathing, especially at night when I laid down. I would prop myself up with three pillows, but even that didn't always help. I'd end up out in the living room trying to sleep in my recliner. This brings me to this year.
Since the beginning of the year I have been in the hospital for at least four days on five separate occasions. First, to try and figure out what to do about my blood pressure problem. You haven't lived until you see the look on a nurse's face when she was taking your blood pressure as you stand up and it's lower than someone who is in shock. She actually asked, “Why are you still conscious?” Oh, the good times. I was in the hospital for both my 65th birthday and our 25th wedding anniversary. Next, and this was over Valentines Day, was a stay to try and figure out my breathing difficulty. No luck, but I did develop a new problem while in the hospital. Something called Lymphedema which is the swelling that occurs when the bodies drainage system (the lymph glands) clog up. Another radiation gift. My left arm swelled to twice normal size and my cheeks started to take on the look of a hamster. But the worst was yet to come.
Dawn had lost her Executive Directors job in September, 2013. We were making do with my Social Security Disability payment and her unemployment but that ran out in the middle of March. Fortunately she was able to find another job that started the last week of March, so we were going to be okay. Well, not so fast. Her new job required some late nights and Saturday work. When she got home, late, Friday night she discovered that I had taken yet another fall and cut my left hand rather badly. Now, I used to work construction and had always followed the rule that any wound below the elbow didn't count. I'd bandaged it pretty well, considering I only had one hand to use, and was content to just let it be. When Dawn got home and took a look at it (that is, a look at the bandaging. I wasn't going to unwrap it then) she suggested that she should take me to the ER. Now, this was 11:30 at night. Not only had she worked 13 plus hours, but she needed to be at work early the next morning. She called her employer at 11:40 and told him that she she wouldn't be in to work the next day, so that she could take care of me. Premonition – perhaps. I said no to the ER visit and we proceeded to head to bed. I, as usual, ended up in the living room with breathing problems.
The next morning I felt pretty bad. So bad, in fact, that I said to my darling that I think that maybe I should go to the hospital. This had nothing to do with my hand and everything to do with my breathing. Next to marrying this wonderful woman, that was probably the smartest thing I ever did. We arrived at the Emergency Department and went through the usual intake stuff; paper work, strip to the waist and put on a gown, insertion of an IV and an interview and examination by the ER doctor. He figured that I should have a CT scan of my neck, so the CT Department across the hall was notified and in just a few minutes I was wheeled into the CT room. I told the nice technicians that, because of the angle of my neck they'd have to put a pillow under my butt so that my head would lay flat in the machine. And then... I found that I couldn't breath! I remember croaking, “I can't breath,” to the technicians, but that's the last thing I remember.
According to Dawn, they wheeled me back into my exam room in the Emergency Department. I was turning a frightening shade of blue. Since I can't remember any of this, I'll let Dawn take up the story.
As Glenn was being wheeled back to his ER room he sat up in his bed and flailed around two times and then he quit breathing. He was in essence dead. I'm not sure if his heart stopped beating, but a member of the ER staff started to manually bag him. Glenn continued to turn more blue. The physician in charge tried everything to get me out of the room, but that wasn't going to happen. I knew more than anyone in that hospital Glenn's medical history, so I may have been able to provide information quickly in a life or death situation. Also, if Glenn could not be revived, I knew what he wanted to happen with his remains. But I sure as hell wasn't ready to throw in the towel.
Within minutes a surgeon appeared and we agreed to go with an emergency tracheotomy because it was the only chance that Glenn had to remain alive. The surgeon was concerned that Glenn's brain was too saturated with carbon dioxide. The result would be that his respiratory system would not kick in even after the tracheotomy. I assured the surgeon that I understood what he was telling me and I remember saying, “ If you can't establish an airway, let him go – and he wants his body donated to the West Virginia University Medical School.” The physician in charge told me that family members have a hard time letting go, so I repeated what I just said with the hope that they would stop talking and start the surgery. I was told that we would know within 30-40 minutes if the procedure was successful. Keep in mind that we had been talking about performing a controlled tracheotomy with Glenn's ENT doctor, but no one wanted to go there because of the extent of his fibrosis. I am happy to report that the operation was a success. Since Glenn didn't need to be anesthetized his recovery time was very short. I was by his side very quickly. He was alert and his body color had returned to a healthy pink. His first question was, “Did I crash?” I responded, yep, big time - but you look really good for a dead guy. Can you tell who is more of a romantic in our marriage?
Hi, Glenn here again. I may have been out of the woods, but I was nowhere near well. I needed Dawn by my side because, frankly, I was a mess. Four days later I left the hospital. The doctors ordered me “Home Bound,” which means what it sounds like. I couldn't leave the house except for trips to the doctor. A Home Health Nurse was brought in to help with dealing with the Trach and a visiting Physical Therapist came to see me three times a week. A week after coming home I was back in the ER with lots of blood coming out of my Trach tube. They think it was from the trauma of the emergency surgery. Another four day stay and home we went. I was home for about 3 hours when my doctor called to tell us that a blood test came back showing that I had an infection in my blood. The next morning I was readmitted for what turned into a six day stay with IV antibiotics. I then started almost five weeks of IV antibiotics at home. Every day, seven days a week, Dawn would take me up to the hospital for a refill of my portable infusion machine. She had to take me because I was not allowed to drive. Notice the pattern here? Dawn couldn't go back to work because she was my only caregiver. Our household economy started down hill from there. After the home antibiotics I was “released” to leave the house, so Dawn set about going back to work. The only problem was, the job was no longer there.
We've kept the bills paid as best we could by selling what we could of any of our stuff that had value, including my 43 year old guitar. Our car was side swiped in a parking lot and instead of getting it fixed, we used the insurance check to pay bills. We took out an equity line of credit loan on the house and another small loan from a relative, but that money is now gone. To put it bluntly, because Dawn had to take time off to take care of me she lost her job and as of now, we're broke. Most of our bills are credit card and loan debt (at high interest rates) that we had used to pay the medical bills from my original cancer treatments. And just to put the frosting on the cake, I can't even try to get a job since the same internal swelling that blocked my natural airway is now robbing me of the ability to talk.
We've pretty much cut our expenses as far as we can cut. Dawn is still job hunting every day so losing internet and telephone would be a disaster. Our hope is to raise enough money to at least help pay our monthly bills with some added funds for household and out of pocket expenses for the next few months until she finds work.
Thank you to everyone who donates. We didn't want to take this route, but in a tight job market Dawn's next paycheck might still be months away.
Again, Thank you all,
Glenn and Dawn Schumacher
Hello. My name is Glenn Schumacher and I had Cancer. This has left us in dire economic condition. Please help!
I was diagnosed on August 9, 2006 with a Squamous Cell cancer on the right base of my tongue. My reaction was, “So, how quickly can we get rid of this thing?” It turned out that the answer was, “seven weeks.” As in seven weeks of radiation treatments five times a week and four or five weeks of relatively low dose chemo therapy twice a week. Heck, that didn't sound so bad. I just sort of ignored the fact that I didn't have any health insurance.
The low dose chemo meant that I would keep my hair. Then the doctor explained that some people kept eating throughout the treatments so they didn't need a feeding tube. Well, I just knew that I was in that group. So, on Monday of the last week of August 2006 I started my battle against cancer. I'll skip all the unpleasant details except to say that by the first week of October I knew that I was in the “other” group. The one that desperately needed a feeding tube. But it was only going to be a temporary measure and it sure beat dying from dehydration (and I also couldn't swallow my pain medication!). Things progressed from there until, in late October, it was over. I had lost 40 pounds, couldn't swallow, could barely talk for the pain, but, as my doctors liked to remind me, I was alive.
I was so alive, in fact, that my beautiful wife, Dawn, and I hopped on a plane in early January 2007 and flew to Chicago to surprise my Dad on his 80th birthday. I was still tube feeding but felt pretty good. Here's a picture from two years earlier and one from Dad's party.
Little did I know that the fun was about to begin. Less than a week after the birthday party I was in the hospital for the (planned) removal of the lymph nodes on the right side of my neck. The doctor explained that this was a precaution in case the cancer had spread. Next, after I healed from the surgery, I started procedures to reopen my throat. These went on about every three weeks until the last week of April when it was discovered that I had developed a rather nasty bone infection in my neck. The side effects of cancer treatments had begun.
The infection lead to a Tracheotomy (so that I could keep breathing) and the permanent bending of my head forward and the pretty complete stiffening of my neck in that position. I can't raise my head to even straight, let alone look up at the sky. Nor can I turn my head either right or left more than about an inch. Of course, the infection also ended any hope I had that I would soon be sitting down to a nice grilled burger any time soon. Or, as it's turned out, ever. I haven't eaten or drunk anything since April, 2007. The good news was that I only needed the trach for eleven months. It was removed in June of 2008. But wait, there's more.
Radiation treatments for head and neck cancers, or as I like to call them,”The gift that keeps on giving,” have the nasty habit of causing side effects well into the future. So next, I developed what's called Radiation Induced Fibrosis, which is a fancy way of saying that my neck and upper shoulder muscles have turned into hard as rock scar tissue. Things were going along pretty well from 2008 until 2013 with only minor skirmishes, but then that gift decided to give some more.
I had noticed early on that sometimes when I would get up from a chair too quickly that I'd get light headed. Well, in 2013 it got much worse and I started to fall down when I got up. Not right away, mind you. No, I'd get 15 steps toward the bathroom and wham, my leg would just collapse and down I'd go. Or there was the time when I bent down to get something from the dishwasher and proceeded to fall right in. The dishwasher door is still not right. Thus began the trips to the Vascular Surgeon, two doctors of Neurology and even two Neurosurgeons. It turned out that the radiation had given me a condition that causes my blood pressure to fall whenever a stand up. My blood pressure falls and then so do I.
Then the fibrosis started to advance again. It started back up my neck, only now it was on the inside. I started having a hard time breathing, especially at night when I laid down. I would prop myself up with three pillows, but even that didn't always help. I'd end up out in the living room trying to sleep in my recliner. This brings me to this year.
Since the beginning of the year I have been in the hospital for at least four days on five separate occasions. First, to try and figure out what to do about my blood pressure problem. You haven't lived until you see the look on a nurse's face when she was taking your blood pressure as you stand up and it's lower than someone who is in shock. She actually asked, “Why are you still conscious?” Oh, the good times. I was in the hospital for both my 65th birthday and our 25th wedding anniversary. Next, and this was over Valentines Day, was a stay to try and figure out my breathing difficulty. No luck, but I did develop a new problem while in the hospital. Something called Lymphedema which is the swelling that occurs when the bodies drainage system (the lymph glands) clog up. Another radiation gift. My left arm swelled to twice normal size and my cheeks started to take on the look of a hamster. But the worst was yet to come.
Dawn had lost her Executive Directors job in September, 2013. We were making do with my Social Security Disability payment and her unemployment but that ran out in the middle of March. Fortunately she was able to find another job that started the last week of March, so we were going to be okay. Well, not so fast. Her new job required some late nights and Saturday work. When she got home, late, Friday night she discovered that I had taken yet another fall and cut my left hand rather badly. Now, I used to work construction and had always followed the rule that any wound below the elbow didn't count. I'd bandaged it pretty well, considering I only had one hand to use, and was content to just let it be. When Dawn got home and took a look at it (that is, a look at the bandaging. I wasn't going to unwrap it then) she suggested that she should take me to the ER. Now, this was 11:30 at night. Not only had she worked 13 plus hours, but she needed to be at work early the next morning. She called her employer at 11:40 and told him that she she wouldn't be in to work the next day, so that she could take care of me. Premonition – perhaps. I said no to the ER visit and we proceeded to head to bed. I, as usual, ended up in the living room with breathing problems.
The next morning I felt pretty bad. So bad, in fact, that I said to my darling that I think that maybe I should go to the hospital. This had nothing to do with my hand and everything to do with my breathing. Next to marrying this wonderful woman, that was probably the smartest thing I ever did. We arrived at the Emergency Department and went through the usual intake stuff; paper work, strip to the waist and put on a gown, insertion of an IV and an interview and examination by the ER doctor. He figured that I should have a CT scan of my neck, so the CT Department across the hall was notified and in just a few minutes I was wheeled into the CT room. I told the nice technicians that, because of the angle of my neck they'd have to put a pillow under my butt so that my head would lay flat in the machine. And then... I found that I couldn't breath! I remember croaking, “I can't breath,” to the technicians, but that's the last thing I remember.
According to Dawn, they wheeled me back into my exam room in the Emergency Department. I was turning a frightening shade of blue. Since I can't remember any of this, I'll let Dawn take up the story.
As Glenn was being wheeled back to his ER room he sat up in his bed and flailed around two times and then he quit breathing. He was in essence dead. I'm not sure if his heart stopped beating, but a member of the ER staff started to manually bag him. Glenn continued to turn more blue. The physician in charge tried everything to get me out of the room, but that wasn't going to happen. I knew more than anyone in that hospital Glenn's medical history, so I may have been able to provide information quickly in a life or death situation. Also, if Glenn could not be revived, I knew what he wanted to happen with his remains. But I sure as hell wasn't ready to throw in the towel.
Within minutes a surgeon appeared and we agreed to go with an emergency tracheotomy because it was the only chance that Glenn had to remain alive. The surgeon was concerned that Glenn's brain was too saturated with carbon dioxide. The result would be that his respiratory system would not kick in even after the tracheotomy. I assured the surgeon that I understood what he was telling me and I remember saying, “ If you can't establish an airway, let him go – and he wants his body donated to the West Virginia University Medical School.” The physician in charge told me that family members have a hard time letting go, so I repeated what I just said with the hope that they would stop talking and start the surgery. I was told that we would know within 30-40 minutes if the procedure was successful. Keep in mind that we had been talking about performing a controlled tracheotomy with Glenn's ENT doctor, but no one wanted to go there because of the extent of his fibrosis. I am happy to report that the operation was a success. Since Glenn didn't need to be anesthetized his recovery time was very short. I was by his side very quickly. He was alert and his body color had returned to a healthy pink. His first question was, “Did I crash?” I responded, yep, big time - but you look really good for a dead guy. Can you tell who is more of a romantic in our marriage?
Hi, Glenn here again. I may have been out of the woods, but I was nowhere near well. I needed Dawn by my side because, frankly, I was a mess. Four days later I left the hospital. The doctors ordered me “Home Bound,” which means what it sounds like. I couldn't leave the house except for trips to the doctor. A Home Health Nurse was brought in to help with dealing with the Trach and a visiting Physical Therapist came to see me three times a week. A week after coming home I was back in the ER with lots of blood coming out of my Trach tube. They think it was from the trauma of the emergency surgery. Another four day stay and home we went. I was home for about 3 hours when my doctor called to tell us that a blood test came back showing that I had an infection in my blood. The next morning I was readmitted for what turned into a six day stay with IV antibiotics. I then started almost five weeks of IV antibiotics at home. Every day, seven days a week, Dawn would take me up to the hospital for a refill of my portable infusion machine. She had to take me because I was not allowed to drive. Notice the pattern here? Dawn couldn't go back to work because she was my only caregiver. Our household economy started down hill from there. After the home antibiotics I was “released” to leave the house, so Dawn set about going back to work. The only problem was, the job was no longer there.
We've kept the bills paid as best we could by selling what we could of any of our stuff that had value, including my 43 year old guitar. Our car was side swiped in a parking lot and instead of getting it fixed, we used the insurance check to pay bills. We took out an equity line of credit loan on the house and another small loan from a relative, but that money is now gone. To put it bluntly, because Dawn had to take time off to take care of me she lost her job and as of now, we're broke. Most of our bills are credit card and loan debt (at high interest rates) that we had used to pay the medical bills from my original cancer treatments. And just to put the frosting on the cake, I can't even try to get a job since the same internal swelling that blocked my natural airway is now robbing me of the ability to talk.
We've pretty much cut our expenses as far as we can cut. Dawn is still job hunting every day so losing internet and telephone would be a disaster. Our hope is to raise enough money to at least help pay our monthly bills with some added funds for household and out of pocket expenses for the next few months until she finds work.
Thank you to everyone who donates. We didn't want to take this route, but in a tight job market Dawn's next paycheck might still be months away.
Again, Thank you all,
Glenn and Dawn Schumacher
Organizer
Glenn Schumacher
Organizer
