Okay so I am typing up a list of my medicines I actually take, the surgeries I have had done in my life time and it hits me. Tomorrow I see the new Oncologist and all of a sudden I am bawling like a baby and scared out of my mind. What if all he can tell me is the same thing the other one told me (But nicer) what if there is no cyberknife, chemo baths, surgey to take out part of my liver, cryoblation or other blation, what if there are no clinical trials what if it's chemo or nothing?
I am pretty much healed from the hernia surgery and Tom and I went out to the movies and to Target to buy a lamp and I am feeling like I can get out and do things and I am sorry but I cannot go back to chemotherapy and fatigue and ANY side effects that will take away my being able to LIVE life.
So that leaves one thing, living and loving life with Tom, until ...............................................
If chemotherapy is the only option I choose not to do it, that is my choice and I can do it, I did it before Tom, accepted the cancer and did not do any treatment and I can do it now. But now I have something to lose I didn't before, Tom. I don't want to leave him, I don't want to leave him alone, I don't want to go on to what ever is next no matter what it is without him.
And so I sit here tonight crying and fighting against the panic attack and writing this and suddenly the tears stopped and a peace settled upon me. I looked up from this lap top and said *Thank You Lord* for if it is meant to be there is no other option but chemotherapy I do not and will not choose that but I will choose to live life, love Tom and make memories so when that day comes I take my last breath I can tell Tom my favorite words "I Love You" and "Remember that place between waking and dreaming, that is where I will be waiting for you" (The words Tinkerbelle told Peter Pan).
So I may come here tomorrow happy and skipping to tell you all of good things I will be happy and hope you will be also but if I come and tell you the only option was chemotherapy and I refuse it and I am happy I hope you will be also, I will still have my panic attacks and "OMG what is going to happen moments" but I believe God touched my heart tonight and gave me the wisdom I need.
As have you all.
Tuesday, October 26, 2010
Thursday, October 21, 2010
I screwed up
So guess what stupid thing I did now? I looked at what I wrote to go see my new Oncologist, and it said Thursday the 22nd, well today is Thursday but the 22nd is Friday So it was 10am PST when I called the Dr's office. I was supposed to go in today and I had thought it was tomorrow. I cried so hard cause I have been taking all these pills and sometimes don't even know what time it is so the person I talked to calmed me down and rescheduled me for Wednesday the 27th at 11am. She told me don't feel so bad and it's okay because now I gave the Dr. I was going to see a chance to clear his desk up as he is going on vacation. So now I will see a different Doctor when I go in. I feel so stupid and so alone as Tom just does not understand there is more to helping me through this then saying "it's going to be okay" I need more from him but I don't want to yell at him or get mad at him for something that is not his fault. How can I get him to understand he HAS to help me with things? And I am not just talking about this but the last week I have been weak and just do not want to eat anything and He just says okay and goes on about his business not even bothering to make me soup and try to get me to eat it or anything. I am so confused as when I have had people ill that I cared about I took care of each and every detail and now I feel so stupid cause I screwed up my Dr's appointment and they must think I am a flake or something.
EDITED: Thank you so much for this answer from the forum Sheila:
Marsha-first of all -nothing stupid about missing the appoint.-they may have given it to you wrong and it might be their fault.-If it was yours give yourself some credit for even remembering it was this week. when I get stressed I do forgetfull things too-and some worse-I have actually wrapped up a hoagie-put it in one of my drawers instead of the fridge and to make it worse I accused Larry of taking it for lunch boy did I feel like an idiot-just because Im worrying about mom so see (your smiling over that...)
so we all seem to lose some kind of brainm function under stress-oh I found it two days later.... I think because ae times you seems so strong and independent that Tom may feel hes interfereing- and could also be trying to avoid arguing . He probably cant express his fears of whats going on with you and altho I feel its wrong. I do think hes doing as much as he can emotionally-He may not be the type of person to easily pick up a phone and make plans that might scare the heck out of him and he probably figures you doing it directly you will know if the plans are acceptable or not instead of trying to go through him to you may make it more difficultwith 3rd party. and facts between you and your doctor are less confusing for all.
Dont wait for a hug or snuggle make your move or tell him ahead of time-I need hugs ,brush my hair etc-some people need told what and when. not the same as impulsive on their part (believe me I know) but of the time you want to be left alone he doesnt know and doesnt want to upset you that way-Hes a good guy forgive yourself forgive him make a snuggle movie plan and have a good one
hope all goes well with your appointment.
EDITED: Thank you so much for this answer from the forum Sheila:
Marsha-first of all -nothing stupid about missing the appoint.-they may have given it to you wrong and it might be their fault.-If it was yours give yourself some credit for even remembering it was this week. when I get stressed I do forgetfull things too-and some worse-I have actually wrapped up a hoagie-put it in one of my drawers instead of the fridge and to make it worse I accused Larry of taking it for lunch boy did I feel like an idiot-just because Im worrying about mom so see (your smiling over that...)
so we all seem to lose some kind of brainm function under stress-oh I found it two days later.... I think because ae times you seems so strong and independent that Tom may feel hes interfereing- and could also be trying to avoid arguing . He probably cant express his fears of whats going on with you and altho I feel its wrong. I do think hes doing as much as he can emotionally-He may not be the type of person to easily pick up a phone and make plans that might scare the heck out of him and he probably figures you doing it directly you will know if the plans are acceptable or not instead of trying to go through him to you may make it more difficultwith 3rd party. and facts between you and your doctor are less confusing for all.
Dont wait for a hug or snuggle make your move or tell him ahead of time-I need hugs ,brush my hair etc-some people need told what and when. not the same as impulsive on their part (believe me I know) but of the time you want to be left alone he doesnt know and doesnt want to upset you that way-Hes a good guy forgive yourself forgive him make a snuggle movie plan and have a good one
hope all goes well with your appointment.
Thursday, October 14, 2010
Prayers needed
My husband (Separated but not legally and good friends) brother died last eve, this is the second brother he has lost this year, please keep him in your thoughts and prayers as he needs all the prayers and strength he can get.
YEAH New Oncologist!
Thank you both for the suggestions, I think maybe it was something I picked up as it seems to have passed but have gotten ginger ale and a stick? finger? of whole ginger to shave if needed also. Fal I will respond to your PM later today if you don't mind.
Okay ready for the best news of all?
I CHANGED MY ONCOLOGIST!!!!
Yep, today was the last straw. At 8am just when for once I slept until that long and Tom and I had both just woken up and were getting coffee together etc, my phone rang. It was Amy, Dr. Clune (My Oncologists) assistant. She said Dr. Clune wanted to see me in his office today. I told her there must be some mistake as I was assured I would only have to talk to Kristin from now on, Amy put me on hold and Dr. Clune came on the line, he IMMEDIATELY went off on me telling me I could see him or find another Dr, that was my choice as he would not "allow" me to see any other Oncologists in the office or to deal with his PA alone. THEN the you know what said and I quote "You wanted to know the answer well here's your answer you are going to die in six months if you don't have chemotherapy but if you go back on it you'll live indefinitely and probably out live me, so there's your god damn answer" I hung up and had a break down Tom talked me through it then I called my husband (separated since first married but very good friends and no divorce wanted on either side (long story) and the poor man, his last brother passed away last night from cancer (I think colon but not sure, so I consoled him and talked to him for a small bit of time (he was at the mortuary). My husband is going to call back later tonight. Please pray for him and his mother and I think he has one sister left.
I then called the Oncologist I had called in May and cancelled that appointment, so now I have an appointment for a consult with the new oncologist on the 22nd of this month. I called Amy and left a message for her to fax over all my medical papers especially my PET scan from monday to the new Oncologist and 5 minutes later Dr. Clune called. I calmly explained again what I needed, gave him the fax number and hung up. Then burst out crying, that's how traumatized this man has made me. I also called the California Board of Medicine and they are mailing me a complaint form and I am going to fill it out on Dr. Clune.
Anyways So another chapter is about to begin, the new Oncologist is closer to where we live and from what I have researched on him he is the total opposite of Dr. Clune.
I still am terrified of having chemotherapy but the woman who made the appointment for me says there may be other options but I don't want to get my hopes up. If chemotherapy is my only choice I don't think I can do it as I want to live whatever time I have left with Tom awake and alert and alive and happy. So on the 22nd after I talk to the Oncologist I will know better what treatment if any there is for me and if there is none I was assured the Oncologist would follow me with testing and palliative care and set up hospice when that time comes.
Love and hugs to all
Okay ready for the best news of all?
I CHANGED MY ONCOLOGIST!!!!
Yep, today was the last straw. At 8am just when for once I slept until that long and Tom and I had both just woken up and were getting coffee together etc, my phone rang. It was Amy, Dr. Clune (My Oncologists) assistant. She said Dr. Clune wanted to see me in his office today. I told her there must be some mistake as I was assured I would only have to talk to Kristin from now on, Amy put me on hold and Dr. Clune came on the line, he IMMEDIATELY went off on me telling me I could see him or find another Dr, that was my choice as he would not "allow" me to see any other Oncologists in the office or to deal with his PA alone. THEN the you know what said and I quote "You wanted to know the answer well here's your answer you are going to die in six months if you don't have chemotherapy but if you go back on it you'll live indefinitely and probably out live me, so there's your god damn answer" I hung up and had a break down Tom talked me through it then I called my husband (separated since first married but very good friends and no divorce wanted on either side (long story) and the poor man, his last brother passed away last night from cancer (I think colon but not sure, so I consoled him and talked to him for a small bit of time (he was at the mortuary). My husband is going to call back later tonight. Please pray for him and his mother and I think he has one sister left.
I then called the Oncologist I had called in May and cancelled that appointment, so now I have an appointment for a consult with the new oncologist on the 22nd of this month. I called Amy and left a message for her to fax over all my medical papers especially my PET scan from monday to the new Oncologist and 5 minutes later Dr. Clune called. I calmly explained again what I needed, gave him the fax number and hung up. Then burst out crying, that's how traumatized this man has made me. I also called the California Board of Medicine and they are mailing me a complaint form and I am going to fill it out on Dr. Clune.
Anyways So another chapter is about to begin, the new Oncologist is closer to where we live and from what I have researched on him he is the total opposite of Dr. Clune.
I still am terrified of having chemotherapy but the woman who made the appointment for me says there may be other options but I don't want to get my hopes up. If chemotherapy is my only choice I don't think I can do it as I want to live whatever time I have left with Tom awake and alert and alive and happy. So on the 22nd after I talk to the Oncologist I will know better what treatment if any there is for me and if there is none I was assured the Oncologist would follow me with testing and palliative care and set up hospice when that time comes.
Love and hugs to all
Two days in one
I had a problem day before yesterday and made it to the PET scan yesterday but then had to go to the hospital afterwards, they thought I had a blockage and I have been having problems intermittent vomiting but the day before yesterday I threw up everything that went down. Tom did not go to work yesterday and no problem getting into a treatment room and getting hooked up to an IV as they thought I needed hydration. Then they gave me a shot of dilaudid??????????? after they asked me my pain level and I said 2 out of 10 (still healing from the hernia surgery and have "traveling" pain from left to right side) (and another shot about 4 1/2 hours later of dilaudid) well 9 hours and a CAT scan later they wanted to admit me? I said why? No blockage showing although they did tell me there are lots of mets in liver and lungs but I already knew that (Will find out exactly about that more on the 22nd) and I had not thrown up once in the 9 hours even after chugging that ucky contrast stuff. So they let me go home. I am taking the nausea pills I had for my chemotherapy to see if I can stop the throwing up myself. Even though I still haven't thrown up again. I think myself its my cancer finally making itself known symptomatically as I also have slight irritation in my lungs, like sitting up and leaning forward or breathing deep.
So laying down again but like I put elsewhere on the forums about the Chilean Miners, Gods hands are every where and I am so thankful for God keeping His hands on the miners and keeping them alive for 7 weeks and for getting them to the earths surface, 26 out of 33 out right now so 7 miners still to come out and 5 rescue workers to be brought out. I can't watch it on TV too much just once in a while as I cry so much watching this and seeing this miracle is too emotional for me although I am so happy for this. So will be back on in a day or so perhaps. I keep you all in my prayers and thoughts (((((((((((((((hugs)))))))))))))))))))))
So laying down again but like I put elsewhere on the forums about the Chilean Miners, Gods hands are every where and I am so thankful for God keeping His hands on the miners and keeping them alive for 7 weeks and for getting them to the earths surface, 26 out of 33 out right now so 7 miners still to come out and 5 rescue workers to be brought out. I can't watch it on TV too much just once in a while as I cry so much watching this and seeing this miracle is too emotional for me although I am so happy for this. So will be back on in a day or so perhaps. I keep you all in my prayers and thoughts (((((((((((((((hugs)))))))))))))))))))))
Friday, October 8, 2010
My dosages from July 19th, 2010 chemotherapy and my next appointment to see Kristin
It's okay Sheila, I understand what you are trying to say and no it's not harsh. There are just some things each of us has to find answers for and then look within ourselves and make decisions. I appreciate all your words. My two weak points are emotional (Issues from childhood) and pain, I sincerely am terrified of pain.
So Kristin's assistant Nicole called me back and here are the dosages I received on July 19th:
5-FU 800 mgs
Oxaliplatin 200 mgs
leucovorin 400 mgs
Avastin 10 mgs
So is this a high dosage or a regular dosage anyone have any idea?
And again there is a twist. Kristin cannot see me next week anytime in the morning and then will be out of the office, so the first time I can see her is Friday October 22nd at 10:15 am. So I guess I go do the PET scan on Tuesday, call her office on Wednesday to let her know it it done then wait until October 22nd to go in to see her and talk about the PET scan results, treatments, options and I get to worry all this time about what might be going on in my body and what decisions I will make or not make.
Having slight pain in stomach from healing of hernia surgery so going to take a pain pill and watch TV till I conk out, take care everyone (((((((((((((((hugs)))))))))))))
So Kristin's assistant Nicole called me back and here are the dosages I received on July 19th:
5-FU 800 mgs
Oxaliplatin 200 mgs
leucovorin 400 mgs
Avastin 10 mgs
So is this a high dosage or a regular dosage anyone have any idea?
And again there is a twist. Kristin cannot see me next week anytime in the morning and then will be out of the office, so the first time I can see her is Friday October 22nd at 10:15 am. So I guess I go do the PET scan on Tuesday, call her office on Wednesday to let her know it it done then wait until October 22nd to go in to see her and talk about the PET scan results, treatments, options and I get to worry all this time about what might be going on in my body and what decisions I will make or not make.
Having slight pain in stomach from healing of hernia surgery so going to take a pain pill and watch TV till I conk out, take care everyone (((((((((((((((hugs)))))))))))))
Thursday, October 7, 2010
I am NOT a strong person
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.
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.
Subscribe to:
Posts (Atom)