On Monday, I got a call back from "Patient Advocates" who were referred to me by the American Cancer Society. I was so relieved and excited, thinking, "yeah, someone who can help me and my family get through this insurance nightmare."
I was so wrong. First of all, the woman had no helpful information on Cobra or HIPPA. More importantly, she told me that they had no resources for women with Ovarian Cancer.
During our conversation about insurance she said "we do have a co-pay assistance program that may help you". So when she was finished providing me no useful or helpful information to help with insurance I asked about the program. She was so happy to promote it and described in some detail how beneficial it is because it relieves the burden of some copayments.
Then she asked "what kind of cancer do you have again?" I reply, "Ovarian Cancer." She says, "well maaaaaaam, Ovarian Cancer is not on the approved list." I was shocked and asked her to verify. She checked again and told me that my cancer is not covered under the copay assistance program. After taking a few seconds to control the fumes coming out my ears (which by the way is not good for my healing process) I said, "Do you cover lung cancer?"
Well she couldn't control her enthusiasm enough. "Of course we have programs for lung cancer, we have lots of programs for lung cancer." Now, don't get me wrong, not all people with lung cancer get lung cancer from smoking. Several years ago some people still didn't believe smoking caused lung cancer, today we know better. I would never wish lung cancer on anyone and pray that not one more person gets lung cancer.
BUT............are you kidding? So I say to her "so you're telling me that if someone smokes and is knowingly potentially giving themselves cancer, you have lots of programs to help them, but me, having Ovarian Cancer, which I didn't cause, gets no help!"
She started to try to explain and I interrupted her asking her if she had anything of value to say, she didn't say anything and I hung up on her.
Today my homecare nurse said that there is a program in California for men who have prostate cancer, and if they come here from Mexico, they get free treatment.
What the heck.
So I called the American Cancer Society again, told them the story about the Patient Advocate, and she apologized profusely and stated that Ovarian Cancer has little funding, little awareness and that there really aren't a lot of options. She gave me three programs to call.
THREE! So I am going to pray that one of the three can help us ease this financial burden and help us with this transition. I have to do chemo and the only place I can go for treatment is Seattle. I don't have a choice. My insurance won't cover Seattle.
Ovarian Cancer is just like any other cancer, it hurts, it destroys lives and requires chemo in the advanced stages. Why are we discriminating against Ovarian Cancer?
Just a thought. By the way, Paige (my homecare nurse) was awesome, so helpful. Goodbye Paige. You were a blessing to me. Thanks Barb for the help tonight.
Thank you Mandy so much for helping me navigate this mess. You are my dear sweet sister angel who is saving me. I love you.
Please God watch over and protect all my angels.
Love,
Denise
CDC Symptom Diary Card
Wednesday, August 26, 2009
A Salute to Senator Ted Kennedy
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
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
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
Wednesday, August 19, 2009
insurance woes
I saw my oncologist today. He gave me three handouts: Carboplatin, Paclitaxel, Cisplatin. My chemo is not covered in Seattle, per my insurance. I need to have family with me because my chemo is harsh, requiring 3-4 days of hospitalization for each treatment. He has scheduled a bone marrow biopsy in two weeks and wants me to start chemo as soon as possible. But without family, I cannot tolerate the side effects. My family is critical for my improvement and my insurance company is denying me the ability to be with my family while on chemo.
We have exhausted all family resources and nobody in my family can come to Folsom/Sacramento and take care of me when I am on chemo. What am I going to do? Why does the insurance company care if they are paying for Seattle care or Sacramento care? It might even be cheaper in Seattle.
I am so depressed. My CA125 pre-surgery was over 2700 points. Now it's 241 points. I only need to get it to less than 20. Surgery did so much, I just need a little more treatment.
My insurance is Western Health Advantage. I guess they receive top ratings each year but I have no idea why. I can't believe that I am the only patient who lives away from family and needs chemo.
In the mean time, my lease expires September 30, 2009. I will have to go to Seattle. I am devastated about the insurance. I was really hoping they would at least consider providing me coverage. I can't do chemo alone.
As I recover, I am going to do everything I can to improve my nutrition and overall health, so to eliminate anything that could exaccerbate my ovarian cancer.
For more information on Ovarian Cancer go to http://www.ovariancancer.org
God Bless
We have exhausted all family resources and nobody in my family can come to Folsom/Sacramento and take care of me when I am on chemo. What am I going to do? Why does the insurance company care if they are paying for Seattle care or Sacramento care? It might even be cheaper in Seattle.
I am so depressed. My CA125 pre-surgery was over 2700 points. Now it's 241 points. I only need to get it to less than 20. Surgery did so much, I just need a little more treatment.
My insurance is Western Health Advantage. I guess they receive top ratings each year but I have no idea why. I can't believe that I am the only patient who lives away from family and needs chemo.
In the mean time, my lease expires September 30, 2009. I will have to go to Seattle. I am devastated about the insurance. I was really hoping they would at least consider providing me coverage. I can't do chemo alone.
As I recover, I am going to do everything I can to improve my nutrition and overall health, so to eliminate anything that could exaccerbate my ovarian cancer.
For more information on Ovarian Cancer go to http://www.ovariancancer.org
God Bless
Monday, August 17, 2009
better bit by bit
When will universal healthcare be approved? When will individuals be valued equally? If we had universal healthcare, I would already be arranging for help to pack my belongings. I would already have a new doctor in Seattle. I would be preparing to spend time with my family and relishing in the opportunity. Instead, I'm wondering if I will be able to make my meals and wondering how or if I'll ever be able to have chemo or biologics because nobody is in the area to take care of me. I can't go through chemo alone. I feel so alone.
Well, I am up from resting because it completely wore me out just to go to the lab. I was in so much pain that I had to lay down on the bench in the lobby while I was waiting for my aunt to return. She was so sweet to go to the health food store for me. I guess each day will work itself out. The nurse came around 1pm and then we went to the lab. By the time we returned around 3:15, my pain was almost 10/10.
This is what it's like day to day. Everything hurts, but just a little less. I would not have been able to do all that last week, so I am slowly progressing.
When my aunt leaves on Thursday, I will have a few friends who can stop by for little things, but I need to be on my own. I hope I get there.
I'm hoping that some sort of miracle will happen and that my oncologist will be able to convince my insurance company to pay for chemo in Seattle. It's the best option and the right thing to do. Does anyone know how we can convince WHA to approve treatments in Seattle??????
If you are reading this, remember to tell all the females in your life to learn the symptoms of ovarian cancer, take them seriously, and pay attention to their bodies. Some of the symptoms are embarassing, and it's likely that thousands of women are walking around right now with undetected ovarian cancer because they are too embarassed to tell their symptoms to their doctors. Your life is worth more than a little embarassment.
Time to go back to bed, just wanted to say hello. I love God and my family and friends. Be good to yourself.
Love,
Me
Well, I am up from resting because it completely wore me out just to go to the lab. I was in so much pain that I had to lay down on the bench in the lobby while I was waiting for my aunt to return. She was so sweet to go to the health food store for me. I guess each day will work itself out. The nurse came around 1pm and then we went to the lab. By the time we returned around 3:15, my pain was almost 10/10.
This is what it's like day to day. Everything hurts, but just a little less. I would not have been able to do all that last week, so I am slowly progressing.
When my aunt leaves on Thursday, I will have a few friends who can stop by for little things, but I need to be on my own. I hope I get there.
I'm hoping that some sort of miracle will happen and that my oncologist will be able to convince my insurance company to pay for chemo in Seattle. It's the best option and the right thing to do. Does anyone know how we can convince WHA to approve treatments in Seattle??????
If you are reading this, remember to tell all the females in your life to learn the symptoms of ovarian cancer, take them seriously, and pay attention to their bodies. Some of the symptoms are embarassing, and it's likely that thousands of women are walking around right now with undetected ovarian cancer because they are too embarassed to tell their symptoms to their doctors. Your life is worth more than a little embarassment.
Time to go back to bed, just wanted to say hello. I love God and my family and friends. Be good to yourself.
Love,
Me
Sunday, August 16, 2009
hotel move sigh
On this day I am being temporarily moved to a hotel because my roommate/Landlord has friends in from out of town. He "appreciates" us moving out of the house for a few days so that they can have fun and not be around a "sick" person. My other roommate is not tolerating my digestive challenges well either. Sorry, grow up.
I read my operative and post-op pathology report. After literally moving all my organs around and removing multiple tumors, total radical hysterectomy and appendectomy, my digestion is a bit "off'. I am doing the best I can. I am trying to wean off the pain pills.
The Residence Inn at Folsom was kind enough to give us a major discount because of my condition. Yeah!
So aside from the depression creeping up on me because I'll be losing all of my identity as I know it, I am doing the best I can to stay positive. I had a burst of anger last night though. I don't want to go through this. I don't want to have to move, file bankruptcy, go through chemo. I just want to be well. I want to live in a positive and stress free environment. I want my independence. I want to dance again.
Going through this with no husband is going to be hard. I just pray that God is going to really help my family because I am not dealing well emotionally and am very angry at my doctors for missing this. I'll get to "forgiveness" one day, but not now.
I read my operative and post-op pathology report. After literally moving all my organs around and removing multiple tumors, total radical hysterectomy and appendectomy, my digestion is a bit "off'. I am doing the best I can. I am trying to wean off the pain pills.
The Residence Inn at Folsom was kind enough to give us a major discount because of my condition. Yeah!
So aside from the depression creeping up on me because I'll be losing all of my identity as I know it, I am doing the best I can to stay positive. I had a burst of anger last night though. I don't want to go through this. I don't want to have to move, file bankruptcy, go through chemo. I just want to be well. I want to live in a positive and stress free environment. I want my independence. I want to dance again.
Going through this with no husband is going to be hard. I just pray that God is going to really help my family because I am not dealing well emotionally and am very angry at my doctors for missing this. I'll get to "forgiveness" one day, but not now.
Saturday, August 15, 2009
Hello
My name is Denise and I have Ovarian Cancer. Unfortunately in spite of having medical care for the past two years and good insurance, my doctors missed it! I have Stage III C OC and am still in shock. I am recovering from major abdominal surgery to include a total radical hysterectomy and appendectomy. My surgeon had to leave just a couple tumors less than .5cm. I am grateful for my surgeon and for the thorough work he did to optimally debulk my abdomen. Now I face upcoming chemo via both intravenous and abdominal catheterizing. I am devastated.
Prior to this news, I was barely getting by as a working disabled female adult. I was diagnosed with Rheumatoid Arthritis at age 15, nobody has ever loved me enough to want to marry me and I currently can only afford $600 room rental in a home. I have not had my own apartment since 1995 because I have been unable to afford such luxuries. Now I will lose everything again. I am hoping that as time goes by and as my chemotherapy or appropriate cancer treatment takes place, I can find new friends.
My family is either in Seattle, Denver or San Pedro. I am all alone except for just a few good friends in Folsom. My family does not have the money to travel back and forth and my insurance does not cover out of Northern California. We are still trying to figure out what to do. My oncologist says that I cannot go through chemo without family. What am I going to do?
For now I just want to thank my family, especially Mandy, Mom and Aunt Deb for coming to Folsom and helping me recover from my surgery.
I know God has a plan for me and I am hoping first and foremost that any woman who reads up on the symptoms of Ovarian Cancer will push her doctors to take her situation seriously if she thinks she may have this devastating disease.
I love you all.
Denise
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