Today we lost an amazing human being capable of giving beyond what any human should do. Senator Kennedy cared so much for others and he is gone before he could see his dream become a reality. We need to continue the fight so that all people can have access to affordable quality healthcare, no matter where they live or where they need to go for treatment.
The irony for me is that his office was on my list to call today, literally. I jotted his name down yesterday and said to myself "Senator Kennedy is on my side, maybe his office will help". What a tragedy for those of us who believe healthcare is a right to all living beings. I am so very sad that our hero for the rights of the disabled, disadvantaged, and oppressed, is gone. He is in a better place and I hope that God will help us find someone who can carry the torch.
Mr. Kennedy, I love you and you are a savior to many of us who have been confronted with challenges beyond our control. You spoke for me and I will miss you.
Love,
Denise
CDC Symptom Diary Card
Wednesday, August 26, 2009
Saturday, August 22, 2009
more of my story
To Anyone who will listen:
I feel like I should be in a "Sicko" sequel. I want other women to learn from this. Don't let your doctors take control of your life, don't let them dismiss or marginalize your problems. It could kill you if you do.
I just turned 45 on July 2, 2009, and on my birthday I picked up my CT Scan and radiology report. Happy Birthday to me. All I know is that it was probably the most depressing birthday ever. On June 19th I was sent for a pelvic/abdominal CT scan because I had swelling and pain in my pelvic area. I was referred by my gynecologist, who had not done a pelvic exam on my previous gynocological appointment. I had started feeling these kinds of pains over the past several years, but my complaints never generated the proper treatment. Colonoscopy revealed only melanosis over a year ago. My primary care physicians have been clueless and not one gynecologist picked up on the cancer. You don't wake up one day and all of a sudden have Stage IIIC Ovarian Cancer!
Dr. P (gynecologist) called me on the 19th at 4:30 pm to tell me “you were right, there is something wrong with your ovaries. Your ovaries are 10 cm long and there’s some abnormal tissue". Pause. I ask, “do I need surgery”? He says “most likely”. I ask “how long will I be out?” He said probably six weeks and I’d need the surgery “right away.”
The end of next week comes, I see my hematologist, Dr. J. Before he tells me what we need to do, he asked me what did Dr. P. say, so I told him what Dr. P. said then he says I will need a hysterectomy, that the ovaries have small tumors and there may be something in the lymphnodes. I asked him how big the tumors were, he said they were small. So I was happy because I thought “well, we caught it early”. He informs me he wants me to see Dr. D at "...". I said I had problems with "...", but that was OK with him. He said I needed surgery “yesterday”. I told him all my family is out of the area and that I have no local support. He assured me that he would get me a social services consult when I am referred to the surgeon.
The next morning I went to the lab and they took what looked like 9 viles of blood.
I saw my primary the next Saturday. I waited an hour in the lobby, and by the way this whole time I have been in severe pain, of abdominal bloating, unable to eat any meal other than breakfast. I have nutrition shakes for lunch and dinner. I was lying on my back in the exam room and the first thing my PCP does is tap my belly, saying “what are we going to do about this?”. I almost cried it hurt so bad. She looks at me and says “What have the others told you?”. I said what each doctor said, in sequence. She paused and said “I am going to tell you the truth”. Your tumors are 10 cm and you have other tumors and possibly mets”. I just looked at her and said “how could this have been missed?” She had a blank look on her face and said “I don’t know”. She had been having a bad day because they overbooked her, because usually she is joyful and takes time to talk. She went on to say that they will do a total hysterectomy and chemotherapy. I said all my family is out of the area, southern California and Seattle, and Colorado. OMG!
I expressed the PCP my worries about the future. I already live a meager existence. I rent a room in a home and have been isolated because of my weak immune system. The home is nice, I have a womderful view of Folsom Lake. But as a grown woman, all my posessions can fit in a small truck bed. I have no privacy, no music, no room to dance, cannot cook or live my life freely because of my shared living arrangement. All of us in the home are compromising our freedoms due to the economy. Rent in this area is very high, and all I can afford is a room. I have lived this way for almost 10 years. The only exception was the short time I was with an old boyfriend, and I had an apartment to myself. I feel like a prisoner. Plus, I live with two bachelors who are less than enthused with my physical ailments.
She twisted the knife in my gut by telling me that my best hope will be to go on disability, file for bankruptcy and basically live in poverty. She tried to tell me that she knew other women who had survived ovarian cancer, but all of them were married, and didn’t have to work. They had people to help them and did not have to worry about money. I am alone, and already poor because of my disability. I am one step away from living on the street.
She had no answers. All I could think about is that I have had the symptoms for several years and not one doctor thought about ovarian cancer. I even asked over and over and over, “Have you checked for ALL cancers?” “Are you sure”. I was “too young” to have ovarian cancer they would say. Not one physician in the past three years has looked for ovarian cancer. Now I’m possibly in the last months of my life, but I try to remain hopeful.
She asked me if I wanted anti-depressants. I said “Do I look depressed? I’m pissed, not depressed!”
I went alone to my surgical consultation July 14th at 3:00 pm. All I can say is thank the Lord for speaker phones. I chimed my mom and sister in when Dr. L told me the news. He did an exam and then said I needed a total hysterectomy with removal of my omentum. Then we talked about the possibility of me coming out of surgery with a colostomy bag. Horror of all horrors, but thanks be to God that he was able to remove almost all of the tumors without removing any intestine. It lasted over 4 hours, and he removed multiple tumors including my appendix. My appendix had a major tumor! How could this have been missed???? My surgery seemed to take forever to happen. It was 40 days from June 19th to July 29th. It was like going through Lent all over again. I suffered.
Before surgery, I worked as much as humanly possible, taking minimal sick time. Sometimes I couldn’t even stand up straight and needed to hang on to counters and chairs as I walked along. I had to ice my tummy every day, practically every hour because the pain and ascites was so bad. And running errands to prepare for surgery was just pure agony. Because we didn’t know on a day to day basis the surgery date, I had to constantly be running to the store. It was so hard to prepare.
My family had been trying to figure out what to do and we couldn’t make any arrangements until I had met the surgeon. My employers were already scheduled to be gone most of July, so I had been wearing myself out at work typing a training manual for the temp worker. Everything was in limbo. And the worst part is that not one person held me tight to allow me to cry. During this time I had fallen in love and had my heart broken by rejection too. How much can a girl take? My heart was aching, my body was aching and my soul was drained. And I knew that if I needed chemo I was going to really be in trouble.
The saving grace was bing able to go to Church and receive communion during the week and be able to cry with God. One day I just leaned against the wall of the church so he could hug me.
On July 29, 2009 Dr. L was pleased with “optimally debulking” my cancer. Recovering from the surgery has been tormenting, but with the grace of God and my family, I am making it. My sister Mandy stayed for a week and my Aunt Debbie is leaving on Monday. Barbara is checking in and I have a few friends who have helped out. I would rather have few solid true friends than many "frenemys".
My CA125 went from over 2700 to 241. Yeah!. Dr. Lieserowitz saved my life
The Ovarian Cancer should have been caught. For several years my biggest complaints to my doctors have been abdominal pain, severe extreme fatigue, irregular and very heavy periods, moodiness, and needing to be religious about my bowel routine to avoid problems. I had gas problems and could tell that when I was ovulating, that I was having unusual pains. All of those complaints were either mis-directed or ignored. Three pap smears revealed mild dysplasia and HPV. How could they not think that Ovarian Cancer was possible?
I have started taking heavy doses of probiotics to help me boost my immune system. I have had a severely compromised immune system and severe anemia for several years, with my “treatment” being to “isolate myself”. I was told that if I get a fever and chills I must go to the Emergency Room. The only places I have gone for two years are the store and Church. I work full time, and have few friends. I never go anywhere and have not been dating. People think I am “OCD”. It just hurts.
IV iron treatments only temporarily relieved the fatigue that destroyed my social life and potentially threatening to my job.
My severe anemia has caused me to experience severe social consequences. I have tried to explain to people that I have lived with or worked with in the past, and present, that I’m too tired to do things. I have been called a “loser” because I haven’t gone out to bars or to socialize. I am ridiculed because I have isolated myself, and appear anti-social because I’m simply too tired to do anything. Sometimes when I get home from work, I’m too tired to even check my e-mail. I get bursts of energy every now and then, and up until 3 weeks ago, I was determined to at a minimum, walk a few miles 3 days per week. It was a real challenge to get out the door, but I needed the exercise. In 2007 I just stopped being able to walk 4 miles per day. I told my doctor and she just didn’t take it seriously.
As a matter of fact, I was placed on anti-anxiety medication to help me cope with my extreme fatigue and the social problems related to the fatigue. Looking back, for goodness sakes, the fatigue was a huge glaring red flag that was completely ignored.
I will go so far as to say that severe anemia has destroyed my social life to the point that I am literally hated by other people. People can be so condemning and judgemental.
I have had rheumatoid arthritis since age 15. Being disabled most of my life, I have always strived to work, be a contributor to society, and not a burden to the tax system. My younger years being wrecked because of having arthritis, I have always had poor self-esteem and don’t know what it’s like to feel or be beautiful. I missed prom because I was so ugly from gaining Prednisone weight, and wearing braces on my hands. When I was 17 or 18, my rheumatologist told me not to have children, because I would not be able to take care of them. That depressed me and I think that not being able to have children and being disabled has made it hard for me to find love.
In 1995 I was forced out of my career in the health care industry because of an arthritic flare and minor shoulder surgery. The whole process was shady. I was taken to an empty office space in the human resources department. I was forced to sign a letter to Health One that I would not sue them. I was so stupid. I trusted that my employer would find some kind of work for me to do until my condition improved to work full time, but instead I received two month’s pay. I was in bankruptcy by the end of the year and since then I have NEVER been able to afford my own apartment.
After going 10 years without insurance, trying to earn money with unsuccessful jobs, I finally found a good temporary job in 2006 with minimal insurance and then landed a good steady job in 2007. They offered me Western Health Advantage and for the first time in many moons I had good insurance, not some insurance coupon program. I have one credit card that is over 5K just from old medical expenses. And, I had to pay taxes this year. I’m on the fringes as a working disabled person, that’s all I can say.
I consider myself a modern day nomad, renting rooms in homes, because all I can afford is $600 month for rent.
To sum up the life I have lived, I have always strived to be responsible and hard working. I have to fight for everything and feel completely beaten up by my older doctors from in Folsom, feel badgered by people who misunderstand my fatigue as a personality flaw, feel abandoned by my insurance and am very uncertain about any future. I don’t want to be financially devastated by this cancer, when it could have been caught earlier. Earlier detection could have meant no chemo and back to work in 6 weeks. Instead, I have no idea when or if I’ll return to work or live. All I can do is enjoy the sun, try to laugh and feel love from God, family and true friends each day.
Denise Archuleta (mouse)
I feel like I should be in a "Sicko" sequel. I want other women to learn from this. Don't let your doctors take control of your life, don't let them dismiss or marginalize your problems. It could kill you if you do.
I just turned 45 on July 2, 2009, and on my birthday I picked up my CT Scan and radiology report. Happy Birthday to me. All I know is that it was probably the most depressing birthday ever. On June 19th I was sent for a pelvic/abdominal CT scan because I had swelling and pain in my pelvic area. I was referred by my gynecologist, who had not done a pelvic exam on my previous gynocological appointment. I had started feeling these kinds of pains over the past several years, but my complaints never generated the proper treatment. Colonoscopy revealed only melanosis over a year ago. My primary care physicians have been clueless and not one gynecologist picked up on the cancer. You don't wake up one day and all of a sudden have Stage IIIC Ovarian Cancer!
Dr. P (gynecologist) called me on the 19th at 4:30 pm to tell me “you were right, there is something wrong with your ovaries. Your ovaries are 10 cm long and there’s some abnormal tissue". Pause. I ask, “do I need surgery”? He says “most likely”. I ask “how long will I be out?” He said probably six weeks and I’d need the surgery “right away.”
The end of next week comes, I see my hematologist, Dr. J. Before he tells me what we need to do, he asked me what did Dr. P. say, so I told him what Dr. P. said then he says I will need a hysterectomy, that the ovaries have small tumors and there may be something in the lymphnodes. I asked him how big the tumors were, he said they were small. So I was happy because I thought “well, we caught it early”. He informs me he wants me to see Dr. D at "...". I said I had problems with "...", but that was OK with him. He said I needed surgery “yesterday”. I told him all my family is out of the area and that I have no local support. He assured me that he would get me a social services consult when I am referred to the surgeon.
The next morning I went to the lab and they took what looked like 9 viles of blood.
I saw my primary the next Saturday. I waited an hour in the lobby, and by the way this whole time I have been in severe pain, of abdominal bloating, unable to eat any meal other than breakfast. I have nutrition shakes for lunch and dinner. I was lying on my back in the exam room and the first thing my PCP does is tap my belly, saying “what are we going to do about this?”. I almost cried it hurt so bad. She looks at me and says “What have the others told you?”. I said what each doctor said, in sequence. She paused and said “I am going to tell you the truth”. Your tumors are 10 cm and you have other tumors and possibly mets”. I just looked at her and said “how could this have been missed?” She had a blank look on her face and said “I don’t know”. She had been having a bad day because they overbooked her, because usually she is joyful and takes time to talk. She went on to say that they will do a total hysterectomy and chemotherapy. I said all my family is out of the area, southern California and Seattle, and Colorado. OMG!
I expressed the PCP my worries about the future. I already live a meager existence. I rent a room in a home and have been isolated because of my weak immune system. The home is nice, I have a womderful view of Folsom Lake. But as a grown woman, all my posessions can fit in a small truck bed. I have no privacy, no music, no room to dance, cannot cook or live my life freely because of my shared living arrangement. All of us in the home are compromising our freedoms due to the economy. Rent in this area is very high, and all I can afford is a room. I have lived this way for almost 10 years. The only exception was the short time I was with an old boyfriend, and I had an apartment to myself. I feel like a prisoner. Plus, I live with two bachelors who are less than enthused with my physical ailments.
She twisted the knife in my gut by telling me that my best hope will be to go on disability, file for bankruptcy and basically live in poverty. She tried to tell me that she knew other women who had survived ovarian cancer, but all of them were married, and didn’t have to work. They had people to help them and did not have to worry about money. I am alone, and already poor because of my disability. I am one step away from living on the street.
She had no answers. All I could think about is that I have had the symptoms for several years and not one doctor thought about ovarian cancer. I even asked over and over and over, “Have you checked for ALL cancers?” “Are you sure”. I was “too young” to have ovarian cancer they would say. Not one physician in the past three years has looked for ovarian cancer. Now I’m possibly in the last months of my life, but I try to remain hopeful.
She asked me if I wanted anti-depressants. I said “Do I look depressed? I’m pissed, not depressed!”
I went alone to my surgical consultation July 14th at 3:00 pm. All I can say is thank the Lord for speaker phones. I chimed my mom and sister in when Dr. L told me the news. He did an exam and then said I needed a total hysterectomy with removal of my omentum. Then we talked about the possibility of me coming out of surgery with a colostomy bag. Horror of all horrors, but thanks be to God that he was able to remove almost all of the tumors without removing any intestine. It lasted over 4 hours, and he removed multiple tumors including my appendix. My appendix had a major tumor! How could this have been missed???? My surgery seemed to take forever to happen. It was 40 days from June 19th to July 29th. It was like going through Lent all over again. I suffered.
Before surgery, I worked as much as humanly possible, taking minimal sick time. Sometimes I couldn’t even stand up straight and needed to hang on to counters and chairs as I walked along. I had to ice my tummy every day, practically every hour because the pain and ascites was so bad. And running errands to prepare for surgery was just pure agony. Because we didn’t know on a day to day basis the surgery date, I had to constantly be running to the store. It was so hard to prepare.
My family had been trying to figure out what to do and we couldn’t make any arrangements until I had met the surgeon. My employers were already scheduled to be gone most of July, so I had been wearing myself out at work typing a training manual for the temp worker. Everything was in limbo. And the worst part is that not one person held me tight to allow me to cry. During this time I had fallen in love and had my heart broken by rejection too. How much can a girl take? My heart was aching, my body was aching and my soul was drained. And I knew that if I needed chemo I was going to really be in trouble.
The saving grace was bing able to go to Church and receive communion during the week and be able to cry with God. One day I just leaned against the wall of the church so he could hug me.
On July 29, 2009 Dr. L was pleased with “optimally debulking” my cancer. Recovering from the surgery has been tormenting, but with the grace of God and my family, I am making it. My sister Mandy stayed for a week and my Aunt Debbie is leaving on Monday. Barbara is checking in and I have a few friends who have helped out. I would rather have few solid true friends than many "frenemys".
My CA125 went from over 2700 to 241. Yeah!. Dr. Lieserowitz saved my life
The Ovarian Cancer should have been caught. For several years my biggest complaints to my doctors have been abdominal pain, severe extreme fatigue, irregular and very heavy periods, moodiness, and needing to be religious about my bowel routine to avoid problems. I had gas problems and could tell that when I was ovulating, that I was having unusual pains. All of those complaints were either mis-directed or ignored. Three pap smears revealed mild dysplasia and HPV. How could they not think that Ovarian Cancer was possible?
I have started taking heavy doses of probiotics to help me boost my immune system. I have had a severely compromised immune system and severe anemia for several years, with my “treatment” being to “isolate myself”. I was told that if I get a fever and chills I must go to the Emergency Room. The only places I have gone for two years are the store and Church. I work full time, and have few friends. I never go anywhere and have not been dating. People think I am “OCD”. It just hurts.
IV iron treatments only temporarily relieved the fatigue that destroyed my social life and potentially threatening to my job.
My severe anemia has caused me to experience severe social consequences. I have tried to explain to people that I have lived with or worked with in the past, and present, that I’m too tired to do things. I have been called a “loser” because I haven’t gone out to bars or to socialize. I am ridiculed because I have isolated myself, and appear anti-social because I’m simply too tired to do anything. Sometimes when I get home from work, I’m too tired to even check my e-mail. I get bursts of energy every now and then, and up until 3 weeks ago, I was determined to at a minimum, walk a few miles 3 days per week. It was a real challenge to get out the door, but I needed the exercise. In 2007 I just stopped being able to walk 4 miles per day. I told my doctor and she just didn’t take it seriously.
As a matter of fact, I was placed on anti-anxiety medication to help me cope with my extreme fatigue and the social problems related to the fatigue. Looking back, for goodness sakes, the fatigue was a huge glaring red flag that was completely ignored.
I will go so far as to say that severe anemia has destroyed my social life to the point that I am literally hated by other people. People can be so condemning and judgemental.
I have had rheumatoid arthritis since age 15. Being disabled most of my life, I have always strived to work, be a contributor to society, and not a burden to the tax system. My younger years being wrecked because of having arthritis, I have always had poor self-esteem and don’t know what it’s like to feel or be beautiful. I missed prom because I was so ugly from gaining Prednisone weight, and wearing braces on my hands. When I was 17 or 18, my rheumatologist told me not to have children, because I would not be able to take care of them. That depressed me and I think that not being able to have children and being disabled has made it hard for me to find love.
In 1995 I was forced out of my career in the health care industry because of an arthritic flare and minor shoulder surgery. The whole process was shady. I was taken to an empty office space in the human resources department. I was forced to sign a letter to Health One that I would not sue them. I was so stupid. I trusted that my employer would find some kind of work for me to do until my condition improved to work full time, but instead I received two month’s pay. I was in bankruptcy by the end of the year and since then I have NEVER been able to afford my own apartment.
After going 10 years without insurance, trying to earn money with unsuccessful jobs, I finally found a good temporary job in 2006 with minimal insurance and then landed a good steady job in 2007. They offered me Western Health Advantage and for the first time in many moons I had good insurance, not some insurance coupon program. I have one credit card that is over 5K just from old medical expenses. And, I had to pay taxes this year. I’m on the fringes as a working disabled person, that’s all I can say.
I consider myself a modern day nomad, renting rooms in homes, because all I can afford is $600 month for rent.
To sum up the life I have lived, I have always strived to be responsible and hard working. I have to fight for everything and feel completely beaten up by my older doctors from in Folsom, feel badgered by people who misunderstand my fatigue as a personality flaw, feel abandoned by my insurance and am very uncertain about any future. I don’t want to be financially devastated by this cancer, when it could have been caught earlier. Earlier detection could have meant no chemo and back to work in 6 weeks. Instead, I have no idea when or if I’ll return to work or live. All I can do is enjoy the sun, try to laugh and feel love from God, family and true friends each day.
Denise Archuleta (mouse)
Friday, August 21, 2009
hell days
I hope to one day be an inspiration to someone that Ovarian Cancer is survivable. I hope to say that my surgeon was a messenger from God and that chemo works. I want to live.
Unfortunately though the reality is that the past two days are literally out of hell. I am so overwhelmed with paperwork and decisions, confusions and resistance to change that I am in tears most of the time. I even got into an argument with my loving sister and mother because we are so distressed about insurance, chemo and moving. Today I faxed a letter to Barbara Boxer, asking her to help me find a way to get my insurance company and the Seattle Cancer Care Allliance to work together and cover my chemotherapy. It is ridiculous that my current insurance, employer sponsored plan, that I have been paying into, will not make an exception to help me. I have begged and guilted my family as much as humanly possible to find a way to see if anyone in my family can take care of me in my covered service area (northern California). NOBODY FROM MY FAMILY CAN COME TO NORTHERN CALIFORNIA. Western Health Advantage is putting us through hell.
So now that it has been decided that I will apply for another insurance, no guarantees on acceptance, I am now going to face financial ruin on top of dealing with chemo and the uncertainty of any meaningful life. I AM SO ANGRY WITH THE DOCTORS I HAD IN 2007 AND 2008. They missed my cancer. My surgeon got almost all of my cancer but my oncologist re-stated again that chemo is absolutely necessary. I can't just live, I have to still suffer the chemo. And there is no guarantee that I will even tolerate chemo because I am neutropenic, severly so.
We need a law that mandates insurance companies to provide coverage out of the regular service area in special cases like mine. We also need insurance companies and the gynecology community to cover and provide annual pelvic ultrasounds so that women do not get to Stage 3C cancer before diagnosis. I am so angry so angry so angry. My old doctors will continue to live their lives while I fight to stay alive. Ignorant incompetent doctors should not be allowed to practice. I had symptoms, they could have used their brain and looked for it.
I have already sent a formal request to the California Medical Board and hope that they have results. I don't care if it is "common" for Ovarian Cancer to be missed. Ovarian Cancer should be "uncommonly missed" and the only way to get there is for people like me to yell out to world that Ovarian Cancer is a real threat and a true "silent killer". This is a battle worth fighting.
I sent a letter to my congressman and even called the news. I will not stop.
I NEED HELP WITH SETTING UP A FUNDRAISING SITE. My family has already spent thousands of dollars in airfare, hotels, supplies, and will be spending much more when I get to Seattle. I need to raise money to help with these costs. I'm not the type of person to beg, but this is legitimate and we need all the help we can get.
If anyone can help with establishing the proper links for raising private money, I would be eternally grateful (eternally may not be that far away).
I also need to never have a day like today again. I cannot afford any more anger and fighting. I need to heal from my surgery and I need to find a way to cope with this stress better. I have placed a request for a patient advocate and have spoken with the American Cancer Society. I am slowly learning the ropes, but it is not a quick process. Thank you Mom, Mandy, Pat, Arnie, Aunt Debbie, Dad, Aunt Bernie, Uncle Don, Shawn Allen, Laria, Addie, Shelby, Raymond, Michelle, Courtney, my friend Barb, Randy, Craig and all the people who care about me. Thank you Dr. Lieserowitz.
I love my family and am so sorry for being such a pain in the butt, but I am not eager for poverty, I am not eager for chemo, and not eager for more pain. But I will get through it, other people have. I want to see Laria, Addie, Shelby and Raymond graduate, get married, have kids. I want to see my brother and sister become grandparents. I want to be here. I love living. I want to see everyone in my family again. I want to hug a dolphin. I want to go on a cruise. I want to be in the warm ocean. I want to live.
Denise
Unfortunately though the reality is that the past two days are literally out of hell. I am so overwhelmed with paperwork and decisions, confusions and resistance to change that I am in tears most of the time. I even got into an argument with my loving sister and mother because we are so distressed about insurance, chemo and moving. Today I faxed a letter to Barbara Boxer, asking her to help me find a way to get my insurance company and the Seattle Cancer Care Allliance to work together and cover my chemotherapy. It is ridiculous that my current insurance, employer sponsored plan, that I have been paying into, will not make an exception to help me. I have begged and guilted my family as much as humanly possible to find a way to see if anyone in my family can take care of me in my covered service area (northern California). NOBODY FROM MY FAMILY CAN COME TO NORTHERN CALIFORNIA. Western Health Advantage is putting us through hell.
So now that it has been decided that I will apply for another insurance, no guarantees on acceptance, I am now going to face financial ruin on top of dealing with chemo and the uncertainty of any meaningful life. I AM SO ANGRY WITH THE DOCTORS I HAD IN 2007 AND 2008. They missed my cancer. My surgeon got almost all of my cancer but my oncologist re-stated again that chemo is absolutely necessary. I can't just live, I have to still suffer the chemo. And there is no guarantee that I will even tolerate chemo because I am neutropenic, severly so.
We need a law that mandates insurance companies to provide coverage out of the regular service area in special cases like mine. We also need insurance companies and the gynecology community to cover and provide annual pelvic ultrasounds so that women do not get to Stage 3C cancer before diagnosis. I am so angry so angry so angry. My old doctors will continue to live their lives while I fight to stay alive. Ignorant incompetent doctors should not be allowed to practice. I had symptoms, they could have used their brain and looked for it.
I have already sent a formal request to the California Medical Board and hope that they have results. I don't care if it is "common" for Ovarian Cancer to be missed. Ovarian Cancer should be "uncommonly missed" and the only way to get there is for people like me to yell out to world that Ovarian Cancer is a real threat and a true "silent killer". This is a battle worth fighting.
I sent a letter to my congressman and even called the news. I will not stop.
I NEED HELP WITH SETTING UP A FUNDRAISING SITE. My family has already spent thousands of dollars in airfare, hotels, supplies, and will be spending much more when I get to Seattle. I need to raise money to help with these costs. I'm not the type of person to beg, but this is legitimate and we need all the help we can get.
If anyone can help with establishing the proper links for raising private money, I would be eternally grateful (eternally may not be that far away).
I also need to never have a day like today again. I cannot afford any more anger and fighting. I need to heal from my surgery and I need to find a way to cope with this stress better. I have placed a request for a patient advocate and have spoken with the American Cancer Society. I am slowly learning the ropes, but it is not a quick process. Thank you Mom, Mandy, Pat, Arnie, Aunt Debbie, Dad, Aunt Bernie, Uncle Don, Shawn Allen, Laria, Addie, Shelby, Raymond, Michelle, Courtney, my friend Barb, Randy, Craig and all the people who care about me. Thank you Dr. Lieserowitz.
I love my family and am so sorry for being such a pain in the butt, but I am not eager for poverty, I am not eager for chemo, and not eager for more pain. But I will get through it, other people have. I want to see Laria, Addie, Shelby and Raymond graduate, get married, have kids. I want to see my brother and sister become grandparents. I want to be here. I love living. I want to see everyone in my family again. I want to hug a dolphin. I want to go on a cruise. I want to be in the warm ocean. I want to live.
Denise
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