I know that the hospital and its bureaucracy are going to work my last nerve. When I am exposed to the inner-working of the hospital and its woefully inept scheduling and disclosure, I feel like Frank Costanza shouting, "Serenity Now!" It's all I can do to make it into a private corner and swear under my breath or at Jason about how INEPT! everyone is.
Last Friday, Jason was scheduled to have a feeding tube placed this morning. The appointment was for 9:45 a.m. I asked the scheduler person how long the procedure lasts, she said 30 minutes. I asked if Jason could drive himself home afterward, she said "yes, it's possible, but it's probably better if you can be there." Sure. No problem. Well, after checking in this morning, the GI Tech came to get Jason and said that they would call me in 2.5 hours. What? The procedure only takes 30 minutes, but then he needs to be in the recovery room for a few hours. Ooookay. A glitch, but manageable. I return to my office and get a call from a humorless woman identifying herself as "Sally" saying that Jason will need to be admitted to the hospital overnight. Excuse me? "This is standard for all patients." Right...why did the Tech say 2.5 hours? "He's just a tech. I will talk to him."
I then placed a call to Dr. G's* assistant/scheduler and told her that she needed to really look into letting people know what to expect. She said, "uh huh, okay." Read: "don't tell me how to do my job."
Serenity Now!
Do you think someone makes water balloons stamped "Serenity Now!"? Shooting a couple of those at some well-deserving idiots would be cathartic.
*Dr. G is the specialist Jason now is seeing.
Monday, September 10, 2007
Where we are.
The PET scan showed that the cancer is localized to the right tonsil area and 2-3 lymph nodes adjacent to the right tonsil. It is possible that the cancer has spread beyond the tonsils to tissue in his mouth/tongue. The good news is that it does not appear to have spread anywhere else in his body.
He is considered to have Stage IV cancer. (Stage I is the least severe; Stage IV is the most severe/furthest along.) The doctor is electing to do a combination of chemotherapy and radiation. No surgery. The doctor feels that surgery is contraindicated for two reasons. First, surgery to that area would necessitate also taking tissue from the base of the tongue and the soft palate. This has a high probability of morbidity, i.e., causing damage to his speech and swallowing. Second, removing tissue would traumatize the area and interfere with the effectiveness of radiation treatments. Thank God Jason didn’t have the tonsillectomy like the other doctor prescribed.
He will be undergoing roughly 6 weeks of radiation and chemotherapy, administered simultaneously. Radiation treatments are daily (except weekends) for the entire six-week period. Chemotherapy is administered once every 2 weeks. Jason will need to be off work for 10 weeks or so because of the effects of the treatments. He is having a feeding tube put in today because the combination of radiation to the throat and the effects of chemotherapy will make it difficult for him to eat.
The doctor says that we are trying to cure the cancer, not just treat it. If Jason had the tumor only in his tonsil (and not also in his lymph nodes), then the doctor would put his chance of survival at 85-90%. Because it has spread, the chance of survival is roughly half that. The doctor said this does not mean a 45% survival rate, but rather double the chance of NOT surviving, i.e., 70% chance of survival. Don’t ask me, the math doesn’t add up to me. The doctor encouraged us to use the internet to look at studies, etc. There are a couple of online papers discussing this type of cancer and they put the 5-year survival rate for Stage IV cancer at 30%. Jason is young and otherwise healthy, so that works in his favor. This type of cancer strikes mostly men (3-4 times more than women) and mostly those in their 50’s or older. Maybe the statistics include a lot of men much older than Jason. Also, administering chemo is relatively new, so maybe that gives him a better chance.
He is considered to have Stage IV cancer. (Stage I is the least severe; Stage IV is the most severe/furthest along.) The doctor is electing to do a combination of chemotherapy and radiation. No surgery. The doctor feels that surgery is contraindicated for two reasons. First, surgery to that area would necessitate also taking tissue from the base of the tongue and the soft palate. This has a high probability of morbidity, i.e., causing damage to his speech and swallowing. Second, removing tissue would traumatize the area and interfere with the effectiveness of radiation treatments. Thank God Jason didn’t have the tonsillectomy like the other doctor prescribed.
He will be undergoing roughly 6 weeks of radiation and chemotherapy, administered simultaneously. Radiation treatments are daily (except weekends) for the entire six-week period. Chemotherapy is administered once every 2 weeks. Jason will need to be off work for 10 weeks or so because of the effects of the treatments. He is having a feeding tube put in today because the combination of radiation to the throat and the effects of chemotherapy will make it difficult for him to eat.
The doctor says that we are trying to cure the cancer, not just treat it. If Jason had the tumor only in his tonsil (and not also in his lymph nodes), then the doctor would put his chance of survival at 85-90%. Because it has spread, the chance of survival is roughly half that. The doctor said this does not mean a 45% survival rate, but rather double the chance of NOT surviving, i.e., 70% chance of survival. Don’t ask me, the math doesn’t add up to me. The doctor encouraged us to use the internet to look at studies, etc. There are a couple of online papers discussing this type of cancer and they put the 5-year survival rate for Stage IV cancer at 30%. Jason is young and otherwise healthy, so that works in his favor. This type of cancer strikes mostly men (3-4 times more than women) and mostly those in their 50’s or older. Maybe the statistics include a lot of men much older than Jason. Also, administering chemo is relatively new, so maybe that gives him a better chance.
Wednesday, September 5, 2007
Moving forward.
We had a great weekend. We laughed, played, hung out with family, took care of errands and chores around the house. And I didn't cry once all weekend. The only stab I felt was when, while we were at IKEA shopping for a desk for Nick, Jason mentioned that we might need a different desk in a few years when Nick is a little older. I froze because I realize I still was not picturing Jason being around. At this point, I have no reason to believe he won't be.
Went to church with my mom. She and I both believe in something, the idea of God, but not in the Christian explanation for things. I can't get behind it - I've tried many times. I really wish I could believe, it would be so much easier. For now, we are going to the Unity church down the street for me. I think that the beliefs upon which the Unity church bases its faith are something I can get behind. I hope so. I need to expand my circle.
Went to church with my mom. She and I both believe in something, the idea of God, but not in the Christian explanation for things. I can't get behind it - I've tried many times. I really wish I could believe, it would be so much easier. For now, we are going to the Unity church down the street for me. I think that the beliefs upon which the Unity church bases its faith are something I can get behind. I hope so. I need to expand my circle.
Friday, August 31, 2007
Tooth and such.
Lukey Magoo has broken his first tooth. Today he is 6 months, 2 weeks old.
Nick has his first soccer practice today for his fall season. I switched soccer leagues this year so that he would get more "serious" training. Yeah, he's only 7 years-old, but he needs a little more direction than just running around in a circle once a week kicking a soccer ball to whomever is standing in front of him, regardless of whether that person is on his team. This new league looks as if it will be serious alright...and then some. Nick's practice tonight is a week before the official league practices are scheduled to begin. All in all, I'm looking forward to meeting some new people and for Nick to make some new friends. I loved playing soccer myself and I love to be with my family and see them happy.
Nick has his first soccer practice today for his fall season. I switched soccer leagues this year so that he would get more "serious" training. Yeah, he's only 7 years-old, but he needs a little more direction than just running around in a circle once a week kicking a soccer ball to whomever is standing in front of him, regardless of whether that person is on his team. This new league looks as if it will be serious alright...and then some. Nick's practice tonight is a week before the official league practices are scheduled to begin. All in all, I'm looking forward to meeting some new people and for Nick to make some new friends. I loved playing soccer myself and I love to be with my family and see them happy.
Diagnosis
The diagnosis is in. Cancer.
The tests have confirmed that Jason has cancer - carcinoma to be exact. It is in the lymph nodes on the right side of his neck. It must have spread to that area from somewhere else. The key to successfully treating the cancer is to find the source of it. They suspect it is also in the tonsil on his right side and hopefully that is the source. They will be doing a test (called a PET scan) on Friday, September 7. It is a full body scan to see where else it might have spread. He then will have his tonsils out on September 10 and recover for the next week. Sometime after that, we will have an appointment with an oncologist and take it from there. There really is nothing else to say right now.
I have asked people in my life (family, friends) to please email me or call my cell. I don't want a bunch a of calls to the house for the next little while. We are trying to keep it business as usual for the kids and for our own sanity.
Update: Jason's PET has been moved to Tuesday, September 4. I am pleased with the fact that we will know more sooner. Fingers crossed that the cancer is only in the one area.
The tests have confirmed that Jason has cancer - carcinoma to be exact. It is in the lymph nodes on the right side of his neck. It must have spread to that area from somewhere else. The key to successfully treating the cancer is to find the source of it. They suspect it is also in the tonsil on his right side and hopefully that is the source. They will be doing a test (called a PET scan) on Friday, September 7. It is a full body scan to see where else it might have spread. He then will have his tonsils out on September 10 and recover for the next week. Sometime after that, we will have an appointment with an oncologist and take it from there. There really is nothing else to say right now.
I have asked people in my life (family, friends) to please email me or call my cell. I don't want a bunch a of calls to the house for the next little while. We are trying to keep it business as usual for the kids and for our own sanity.
Update: Jason's PET has been moved to Tuesday, September 4. I am pleased with the fact that we will know more sooner. Fingers crossed that the cancer is only in the one area.
Subscribe to:
Posts (Atom)