August 19, 2003 - Health Update.
Fuck everything. I needed to post this; my dad wrote it yesterday:
On Monday Sandy and I went to Syracuse for my after-surgery check-up. We were hoping for good news, but instead, it was devastating. The surgeon told me that unfortunately the margins from the last tumor removal came back positive; meaning that he didn't get all the cancer out, even though he cut as deep as and as much tissue out as he could. To the naked eye it appeared that he had gotten all the cancer out, he said, but the pathology report came back different. The doctor also said that he and the radiologist saw another questionable spot before my last surgery on my previous CT scan below my right ear, but didn't say anything about it, not knowing for sure what it was. They did another CT scan on Monday to try to get a better idea of what's going on, and saw that there's another tumor growth already about 2 cm. long, growing mostly inward this time because there's no outer tissue left for it to grow onto. The surgeon said that he really couldn't do any more surgery on my neck area without the risk of a stroke, heart attack or death. The doctor did say, however, that he would be willing to do another tumor removal surgery if I were willing to go along with the risks. He said that really they've chased this thing as far they can, and there's not much more he can do without permanently debilitating me or maybe even killing me. All that's left is my spinal cord, vital tissue, carotid artery, etc.
Today (Tuesday) we met with the head of oncology in Syracuse, and found out that I really don't have many options left. There just aren't any miracle drugs on the market yet for osteogenic sarcoma cancer. We asked the doctor about Gleevec, an experimental drug that has been used on children and teens with reoccurring osteosarcoma, which works by cutting off the blood supply to the tumor site. The doctor said that Gleevec is mostly used for leukemia and abdominal tumors, and it hasn't shown much promise for my type of osteosarcoma cancer. Sandy and I have been doing Internet research on trial studies with new drugs, and found a few in New York City and Maryland. We showed them to the doctor and he's going to look into them and get more information on them for us. He did say though that none of the trials in the last 4-5 years have shown any real success. My other option is to go back into University hospital as an inpatient to receive two additional chemotherapy drugs, Cisplatin and Gemzar. I'd have to be admitted for 3-5 days every two weeks for three cycles, take a 4-week break to recover, and then go back in and do another three cycles of 3-5 days every two weeks; a total of about 4 months, plus time after that to recover. The doctor said that these drugs aren't going to cure me, but they may buy me a little more time. I've had Cisplatin before, but they had to stop it because of my hearing loss (one of its side effects). I've never had Gemzar. Just reading all the side effects of the drugs (nausea, vomiting, hair loss, loss of taste and appetite, weakness, fatigue, pain, hearing loss, blurred vision, seeing or hearing strange things, numbness in hands and feet, fever or chills, sores in the throat and mouth, sores on the lips, and many more others) brought back all the bad memories of the 10 months I spent in Syracuse in 2001-2002. I've already been through all of that and the cancer still came back, and I really don't want to do it again. Both drugs also lower your resistance to infection, so you have to avoid people with colds or infections. They also have the potential to do serious and permanent damage to your kidneys. The doctor said that the whole thing is a crapshoot, but if he were going into Las Vegas making bets, he'd go with the Cisplatin and Gemzar. There are no guarantees, but with the 2 standard chemotherapy drugs there's more promise of buying more time. With the experimental drugs it's unknown. I've got to make a decision by next Tuesday, when I meet with the oncologist again. Do I risk taking an experimental drug, or go with the additional standard chemotherapy drugs that I know are going to make me real sick and miserable again, or possibly even finish me off? Sandy and I are going to do some more research so we've got more information to base a decision on. Either way, it looks to me like my days are probably or possibly numbered.
Sandy says that it's not over yet and I'd love to believe that, but I'm not feeling so confident or sure anymore. To tell you the truth, I'm just heartbroken. This is the last thing I wanted or expected to happen. I'm sorry to have to share this news with you. You've all been so encouraging and supportive to my family and me. I can't help but feel that I've let everyone down by not beating this. I tried. I really did. It's been a long hard fight. The sad part is that it looks like no matter what I opt to do now the chances are it's probably not going to stop this cancer. I'm sorry. It's hard to remain positive given the recent findings, but I'm not giving up yet. Who knows, something new could be discovered tomorrow or in the near future. It's possible! (See, forever the optimist). Take care.
-Lynn
Never will he see me grow up. He won't be there in my life. No fishing, camping, playing games... No father and son team. I can't comprehend any of it. I need you there Dad, by my side... I can't do this.
On Monday Sandy and I went to Syracuse for my after-surgery check-up. We were hoping for good news, but instead, it was devastating. The surgeon told me that unfortunately the margins from the last tumor removal came back positive; meaning that he didn't get all the cancer out, even though he cut as deep as and as much tissue out as he could. To the naked eye it appeared that he had gotten all the cancer out, he said, but the pathology report came back different. The doctor also said that he and the radiologist saw another questionable spot before my last surgery on my previous CT scan below my right ear, but didn't say anything about it, not knowing for sure what it was. They did another CT scan on Monday to try to get a better idea of what's going on, and saw that there's another tumor growth already about 2 cm. long, growing mostly inward this time because there's no outer tissue left for it to grow onto. The surgeon said that he really couldn't do any more surgery on my neck area without the risk of a stroke, heart attack or death. The doctor did say, however, that he would be willing to do another tumor removal surgery if I were willing to go along with the risks. He said that really they've chased this thing as far they can, and there's not much more he can do without permanently debilitating me or maybe even killing me. All that's left is my spinal cord, vital tissue, carotid artery, etc.
Today (Tuesday) we met with the head of oncology in Syracuse, and found out that I really don't have many options left. There just aren't any miracle drugs on the market yet for osteogenic sarcoma cancer. We asked the doctor about Gleevec, an experimental drug that has been used on children and teens with reoccurring osteosarcoma, which works by cutting off the blood supply to the tumor site. The doctor said that Gleevec is mostly used for leukemia and abdominal tumors, and it hasn't shown much promise for my type of osteosarcoma cancer. Sandy and I have been doing Internet research on trial studies with new drugs, and found a few in New York City and Maryland. We showed them to the doctor and he's going to look into them and get more information on them for us. He did say though that none of the trials in the last 4-5 years have shown any real success. My other option is to go back into University hospital as an inpatient to receive two additional chemotherapy drugs, Cisplatin and Gemzar. I'd have to be admitted for 3-5 days every two weeks for three cycles, take a 4-week break to recover, and then go back in and do another three cycles of 3-5 days every two weeks; a total of about 4 months, plus time after that to recover. The doctor said that these drugs aren't going to cure me, but they may buy me a little more time. I've had Cisplatin before, but they had to stop it because of my hearing loss (one of its side effects). I've never had Gemzar. Just reading all the side effects of the drugs (nausea, vomiting, hair loss, loss of taste and appetite, weakness, fatigue, pain, hearing loss, blurred vision, seeing or hearing strange things, numbness in hands and feet, fever or chills, sores in the throat and mouth, sores on the lips, and many more others) brought back all the bad memories of the 10 months I spent in Syracuse in 2001-2002. I've already been through all of that and the cancer still came back, and I really don't want to do it again. Both drugs also lower your resistance to infection, so you have to avoid people with colds or infections. They also have the potential to do serious and permanent damage to your kidneys. The doctor said that the whole thing is a crapshoot, but if he were going into Las Vegas making bets, he'd go with the Cisplatin and Gemzar. There are no guarantees, but with the 2 standard chemotherapy drugs there's more promise of buying more time. With the experimental drugs it's unknown. I've got to make a decision by next Tuesday, when I meet with the oncologist again. Do I risk taking an experimental drug, or go with the additional standard chemotherapy drugs that I know are going to make me real sick and miserable again, or possibly even finish me off? Sandy and I are going to do some more research so we've got more information to base a decision on. Either way, it looks to me like my days are probably or possibly numbered.
Sandy says that it's not over yet and I'd love to believe that, but I'm not feeling so confident or sure anymore. To tell you the truth, I'm just heartbroken. This is the last thing I wanted or expected to happen. I'm sorry to have to share this news with you. You've all been so encouraging and supportive to my family and me. I can't help but feel that I've let everyone down by not beating this. I tried. I really did. It's been a long hard fight. The sad part is that it looks like no matter what I opt to do now the chances are it's probably not going to stop this cancer. I'm sorry. It's hard to remain positive given the recent findings, but I'm not giving up yet. Who knows, something new could be discovered tomorrow or in the near future. It's possible! (See, forever the optimist). Take care.
-Lynn
Never will he see me grow up. He won't be there in my life. No fishing, camping, playing games... No father and son team. I can't comprehend any of it. I need you there Dad, by my side... I can't do this.