I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.
When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.
I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.
I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.
I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only pallitive care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.
I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.
I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment).
I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.
So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.
When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.
I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.
I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.
I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. The statistics given to me by the ACS were from 2005 to 2009. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only palliative care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.
I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.
I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment). I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.
So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.
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