I received word at the beginning of June from my cancer center that the insurance provider, a Medicare Advantage contract provider, was ending the contract with my cancer center. This is concerning for me and any patient at the cancer center. Quite an overwhelming situation indeed.
The contract ends July 1, 2013.
After I contacted my insurance company they said that the medicare advantage agreement was the only contract effected and that other contracts with the cancer center remain intact.They said they are happy to send me a booklet of other providers, and although I can retain my doctor, I am confused and overwhelmed by the lack of continuity of care, not having access to specialty trained nurses and techs to access my power port, and how will I navigate my care if my care cannot be provided from the location from which my trusted gynonc-oncologist operates?
I may be able to continue benefiting from their care as an out of network patient through the end of the year. I may need a new treatment team when open enrollment begins again at the end of 2013, because the provider will no longer be available and I have no financial means to access my provider as an out of network patient.
On my last visit I was told that I was fortunate to have lived this long, longer than was expected. My immune system is very compromised, I cannot tolerate many of the newer treatments like PARP inhibiters. I have been on chemo for 16 or 17 months now. Like many cancer patients, I have a complicated mix of challenges. Now is not a good time to be denied access to my cancer facility.
I am also extremely concerned for those patients who do not have the means to pay any extra out of pocket expenses now and are now forced to make quick decisions and changes with minimal notice. What about those who have been paying all year and just now are needing treatment, specialty services and access to the cancer center? Mind you this is the medicare contract, so seniors and people who have disabilities are being effected.
How is this ethical? How is this legal?
I called my local Congressman's office, Jim McDermott, and spoke with a concerned representative who was extremely helpful, provided me the correct actions to take, and highly supported my idea to create legislation that disallows an insurance company to terminate a contract with a medical provider after the open enrollment begins.
I want it to be illegal to cut patients off mid-year, especially complicated scenarios involving cancer. It is exhaustive to research and find an oncologist or oncology surgeon whom you trust with your life, is reputable and will treat you in a manner that meets your individual needs.
This particular situation targets medicare patients, which I find criminal.
Per Mr. David Loud, from Congressman McDermott's Office, here is what I can do:
1. Ask to be referred back into my network provider as a plan exception, as this would be potentially harmful to my quality of care. (A nursing friend recommended to specify that changing networks could be detrimental to my health. I can ask my oncologist to write the letter).
2. As soon as I am seen after the contract ends, which is July 01, 2013, appeal the out of network charges with the insurance company.
3. Seek new Legislation by engaging the people who care to contact their local Comgressman so that Congress can create legislation that prevents insurance companies from terminating provider contracts after the open enrollment period begins. Patients have the right to know they can remain with their chosen medical team and treatment facility for the duration of the year. For patients who have chronic or potentially fatal medical conditions, being forced to change providers can be detrimental to the patient's continuity of care and potentially put the patient's health in a state of grave risk.
I plan to keep you all posted on my progress.
Click on the next paragraph to locate your Congressman's office:
I cannot end without stating how much I appreciate the level of access to healthcare provided to me. I always recognize that I am blessed, it could be worse, and to remain humble at all times. I thank God every day for my blessings.
Thank you for caring. Please share with amyone who would care to join this important effort.
Peace,
Denise
CDC Symptom Diary Card
Thursday, June 13, 2013
Friday, June 07, 2013
Mesothelioma or Ovarian Cancer?????????
Dear readers, I have something very unique to share with you today.
My mother's father died of mesothelioma, lung cancer, many years ago. Emory was an honest, hard working man from Kansas. He served our country as a medic in WWII for the troops building the Burma Road. He also helped to engineer buildings and pretty much anything this great country asked of him. After the war ended, it took 30 days on a carrier to return home from overseas. He never ate rice again.
Upon returning to Kansas grandma and grandpa decided that it was time to start a family. They started with my mom. Eventually he opened a small construction company in Denver. He built a number of small, quality homes, that made us proud. His integrity and word were important to him. He was precise and paid honest wages for honest work. People were proud of my grandpa. You may have heard my mom on the KLG and Hoda show talk about how her father was her inspiration.
When he was in his 70s he was diagnosed with mesothelioma, and the stage was too late for chemo. He had surgery, returned to Kansas with grandma, and eventually passed away after suffering unimaginable pain. Our family was at his side when he died after receiving upstanding hospice care. It was so sad, we were all heartbroken.
He wanted chemo, he wanted to live.
I remember once visiting grandma and grandpa in Kansas after they purchased an old post office in a small town of literally 20 people. He did a little remodeling, built a tiny barn, he stocked it with 5 or 6 cows, a hand-full of chickens and planted some corn, not sure. The mini barn was picture perfect, pristine, a little cow palace I thought.
I remember there was not a street light to be seen along the dirt road that wound it's way to the highway. At night you could see billions of stars, hear the crickets sing, and breathe in the freshest air on the planet. The air was still, but alive.
They lived a good life.
Recently I received an email from Andrew Devine, Community Outreach for the
Here is what he had to say:
"Hi Denise,
I came across the Nobody Has Ovarian Cancer site while searching for organizations to reach out to about mesothelioma cancer. It's really great how you used your story to reach out to other women. Although it's rare, mesothelioma in the stomach can metastasize to the ovaries. This type of mesothelioma is often mistaken for ovarian cancer in CT scans, which is unfortunate for early diagnoses and treatment.
I contacted you because I’m part of the Community Outreach team at Mesothelioma Guide, and we are a new site reaching out to the community to provide up-to-date support to mesothelioma patients and family members. Essentially, we’re doing the same thing you are, helping people understand health issues, giving them someone to talk to and how they can be proactive about it, just in a different way."
I was surprised to learn of this possibility, that mesothelioma could be mistaken for ovarian cancer. I did not even know that there are different types of mesothelioma.
I am very thankful to Andrew for revealing this important, but rare cancer danger, so that it can be shared with you.
Please follow this link to learn more:
http://www.mesotheliomaguide.com/guide/guide-b/#
I love you Grandpa, hope that I see you in heaven some day.
Below I have pasted a link and partial abstract from the The National Center for Biotechnology Information about this type of cancer.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3396062/
Performing your original search, mesothelioma ovarian, in PMC will retrieve 2124 records.
Int J Clin Exp Pathol. 2012; 5(5): 472–478.
Published online 2012 May 23.
PMCID: PMC3396062
Salih Taşkın,1 Yeliz Gümüş,1 Saba Kiremitçi,2 Korhan Kahraman,1 Ayşe Sertçelik,2 and Fırat Ortaç1
1Departments of Obstetrics and Gynecology, Ankara University School of Medicine, Ankara, Turkey
2Departments of Pathology, Ankara University School of Medicine, Ankara, Turkey
Address correspondence to: Dr. Salih Taşkın, Ankara Üniversitesi Tıp Fakültesi, Kadın Hastalıkları ve Doğum Anabilim Dalı, 06100 Cebeci, Ankara, Turkey Tel: +90 532 3925195; Fax: +90 312 3203553; E-mail: salihtaskin@yahoo.com
Diffuse peritoneal malignant mesothelioma is a rare, progressive, and ultimately fatal disease and it can present as primary peritoneal carcinoma or ovarian cancer. Differential diagnosis is important to establish appropriate management. In this article the clinical presentation, immunuhistochemical and histopathological features of 8 diffuse peritoneal malignant mesothelioma cases presented as peritoneal carcinoma or ovarian cancer are evaluated. According to findings of all reported cases, we concluded that clinical distinction of malignant mesothelioma from ovarian cancer or peritoneal adenocarcinoma is very difficult. Differential diagnosis is reliably achieved by immune profile of the tumors with a systematic approach of both positive and negative mesothelioma markers.
My mother's father died of mesothelioma, lung cancer, many years ago. Emory was an honest, hard working man from Kansas. He served our country as a medic in WWII for the troops building the Burma Road. He also helped to engineer buildings and pretty much anything this great country asked of him. After the war ended, it took 30 days on a carrier to return home from overseas. He never ate rice again.
Upon returning to Kansas grandma and grandpa decided that it was time to start a family. They started with my mom. Eventually he opened a small construction company in Denver. He built a number of small, quality homes, that made us proud. His integrity and word were important to him. He was precise and paid honest wages for honest work. People were proud of my grandpa. You may have heard my mom on the KLG and Hoda show talk about how her father was her inspiration.
When he was in his 70s he was diagnosed with mesothelioma, and the stage was too late for chemo. He had surgery, returned to Kansas with grandma, and eventually passed away after suffering unimaginable pain. Our family was at his side when he died after receiving upstanding hospice care. It was so sad, we were all heartbroken.
He wanted chemo, he wanted to live.
I remember once visiting grandma and grandpa in Kansas after they purchased an old post office in a small town of literally 20 people. He did a little remodeling, built a tiny barn, he stocked it with 5 or 6 cows, a hand-full of chickens and planted some corn, not sure. The mini barn was picture perfect, pristine, a little cow palace I thought.
I remember there was not a street light to be seen along the dirt road that wound it's way to the highway. At night you could see billions of stars, hear the crickets sing, and breathe in the freshest air on the planet. The air was still, but alive.
They lived a good life.
Recently I received an email from Andrew Devine, Community Outreach for the
Here is what he had to say:
"Hi Denise,
I came across the Nobody Has Ovarian Cancer site while searching for organizations to reach out to about mesothelioma cancer. It's really great how you used your story to reach out to other women. Although it's rare, mesothelioma in the stomach can metastasize to the ovaries. This type of mesothelioma is often mistaken for ovarian cancer in CT scans, which is unfortunate for early diagnoses and treatment.
I contacted you because I’m part of the Community Outreach team at Mesothelioma Guide, and we are a new site reaching out to the community to provide up-to-date support to mesothelioma patients and family members. Essentially, we’re doing the same thing you are, helping people understand health issues, giving them someone to talk to and how they can be proactive about it, just in a different way."
I was surprised to learn of this possibility, that mesothelioma could be mistaken for ovarian cancer. I did not even know that there are different types of mesothelioma.
I am very thankful to Andrew for revealing this important, but rare cancer danger, so that it can be shared with you.
Please follow this link to learn more:
http://www.mesotheliomaguide.com/guide/guide-b/#
I love you Grandpa, hope that I see you in heaven some day.Below I have pasted a link and partial abstract from the The National Center for Biotechnology Information about this type of cancer.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3396062/
Malignant peritoneal mesothelioma presented as peritoneal adenocarcinoma or primary ovarian cancer: Case series and review of the clinical and immunohistochemical features
Performing your original search, mesothelioma ovarian, in PMC will retrieve 2124 records.
Int J Clin Exp Pathol. 2012; 5(5): 472–478.
Published online 2012 May 23.
PMCID: PMC3396062
Salih Taşkın,1 Yeliz Gümüş,1 Saba Kiremitçi,2 Korhan Kahraman,1 Ayşe Sertçelik,2 and Fırat Ortaç1
1Departments of Obstetrics and Gynecology, Ankara University School of Medicine, Ankara, Turkey
2Departments of Pathology, Ankara University School of Medicine, Ankara, Turkey
Address correspondence to: Dr. Salih Taşkın, Ankara Üniversitesi Tıp Fakültesi, Kadın Hastalıkları ve Doğum Anabilim Dalı, 06100 Cebeci, Ankara, Turkey Tel: +90 532 3925195; Fax: +90 312 3203553; E-mail: salihtaskin@yahoo.com
Diffuse peritoneal malignant mesothelioma is a rare, progressive, and ultimately fatal disease and it can present as primary peritoneal carcinoma or ovarian cancer. Differential diagnosis is important to establish appropriate management. In this article the clinical presentation, immunuhistochemical and histopathological features of 8 diffuse peritoneal malignant mesothelioma cases presented as peritoneal carcinoma or ovarian cancer are evaluated. According to findings of all reported cases, we concluded that clinical distinction of malignant mesothelioma from ovarian cancer or peritoneal adenocarcinoma is very difficult. Differential diagnosis is reliably achieved by immune profile of the tumors with a systematic approach of both positive and negative mesothelioma markers.
Thursday, May 16, 2013
Jolie Being Proactive To Avoid Ovarian Cancer
By clicking on this paragraph, you will be taken directly to the article from Healthday. I am so sorry that I am unable to add the direct link.
Dear readers, this article about Angelina Jolie's decision to also have her ovaries removed is well written and informative. It provides educational information that helps to further explain all the options for managing preventative measures related to breast and ovarian cancer.
Taking this measure can be a life saving measure, and I am so proud of her for being proactive and sharing this journey with us. Ovarian cancer is not well understood, underfunded in terms of reaearch, and is the deadliest of all the gynecological cancers.
Bless you Angelina and may you always be healthy and smiling!
............
Angelina Jolie Will Have Ovaries Removed to Lower Chances of Cancer: Report
Actress has already had double mastectomy due to gene linked to high risk for breast, ovarian cancer
May 15, 2013
By Steven Reinberg
HealthDay Reporter
WEDNESDAY, May 15 (HealthDay News) -- Film star Angelina Jolie will have her ovaries removed to help lower her odds for ovarian cancer, People magazine reported Wednesday.
The news comes just a day after Jolie, 37, revealed in an article published on the editorial page of The New York Times that she had undergone a double mastectomy. Jolie wrote that she made the decision after learning she carried a gene, called BRCA1, that is linked to a significantly higher risk for both breast and ovarian cancers.
[See Diet Changes That Might Cut Breast Cancer Risk.]
Now, Jolie "is also planning to undergo surgery to remove her ovaries," an operation known as oophorectomy, according to People.
Jolie's mother, actress Marcheline Bertrand, died of ovarian cancer at the age of 56.
According to the Mayo Clinic, preventive removal of the ovaries can cut the risk of ovarian cancer in a woman with a BRCA mutation by 80 percent to 90 percent.
In the Times article, Jolie said she began the process to have both of her breasts removed in early February.
[See 4 Steps to Take Now to Lower Your Breast Cancer Risk.]
Writing about her mother's nearly 10-year-long battle with cancer, Jolie said: "She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was."
Jolie, who has six children with her companion and fellow film star Brad Pitt, said she often finds herself trying to explain to her children about the disease that killed her mother. "They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a 'faulty' gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer," she wrote.
[See Gaining a Pound a Year After Age 20 Nearly Doubles Women's Breast Cancer Risk.]
The BRCA1 and related BRCA2 genes belong to a class of human genes known as tumor suppressors. According to the U.S. National Cancer Institute, in normal cells, the BRCA1 and BRCA2 genes help to maintain the stability of a cell's genetic material -- called DNA -- and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.
The cancer institute estimates that 14 out of every 1,000 women in the general population will develop ovarian cancer in their lifetime. However, that risk rises steeply among women with mutations in either the BRCA1 or BRCA2 genes to anywhere between 155 to 400 women per 1,000.
These genetic mutations are most commonly found in Jewish women of eastern European descent. Also, Norwegian, Dutch, and Icelandic peoples have higher rates of BRCA1 and BRCA2 mutations, according to the cancer institute.
Dr. Michael Cowher, a breast surgeon at the Cleveland Clinic, said the BRCA mutation doesn't just affect women's breasts or ovaries -- males who carry the genetic mutation face an increased risk of breast and prostate cancers. Also, there's an increased risk of pancreatic cancer in BRCA2 and some BRCA1 carriers, he said.
[See Weight Gain Ups Breast Cancer Risk: 7 Ways to Avoid the Bulge.]
Oophorectomy does come with its own risks for premenopausal women, according to the Mayo Clinic, and the decision should be carefully considered. Risks include bone-thinning (osteoporosis), menopausal symptoms such as hot flashes and an increased risk of heart disease.
The procedure itself "is a generally safe procedure that carries a small risk of complications, including infection, intestinal blockage and injury to internal organs," the Mayo Clinic said.
In regards to Jolie's double mastectomy, experts stressed that breast removal isn't the only choice facing a woman with BRCA mutations. "There are other options they can discuss with their doctor," Cowher said. "These include chemoprevention with medications like tamoxifen, and increased frequency of clinical and image-based screening regimens," he explained.
A double mastectomy involves removing as much "at-risk" tissue as possible to reduce the risk of cancer. The procedure does not, however, guarantee complete protection against cancer, according to the cancer institute.
[See Breast Cancer Chemotherapy: Making Bald Beautiful.]
Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City, called a double mastectomy "the best option for someone who is BRCA-positive."
"The risk of cancer is extremely high and we know that you can watch them, but there is no guarantee that you will catch the cancer at an early stage," she said. "If you have the ability to prevent a cancer, that's probably the best route," Bernik explained.
"Not everyone wants a prophylactic mastectomy and they don't all do that," Bernik said. "But women should certainly be informed."
Bernik said more women are opting for the procedure. "The reconstructive options have improved dramatically over the past 15 years, so women can at least feel confident knowing that if they remove their breasts they will be left with a very good to excellent cosmetic result," she said.
Writing in the Times article, Jolie said, "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
"Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could. I made a decision to have a preventive double mastectomy."
[See Sex After Breast Cancer.]
Jolie said the process of having her breasts removed was finished by late April, and included the reconstruction of both breasts with implants. "There have been many advances in this [reconstruction] procedure in the last few years, and the results can be beautiful," she wrote.
According to the cancer institute, genetic testing can reveal whether a woman carries a BRCA1 or BRCA2 mutation. There are benefits to such testing, whether a woman receives a positive or a negative result. "The potential benefits of a negative result include a sense of relief and the possibility that special preventive checkups, tests, or surgeries may not be needed. A positive test result can bring relief from uncertainty and allow people to make informed decisions about their future, including taking steps to reduce their cancer risk," the agency said.
For her part, Jolie said: "I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don't need to fear they will lose me to breast cancer."
"For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."
[See Free Services for Women With Breast Cancer.]
More information
To learn more about the BRCA1 and BRCA2 mutations, visit Susan G. Komen for the Cure.
Copyright © 2012 HealthDay. All rights reserved.
You might be interested in...
U.S. News Diet Rankings - See What Really Works
Top Recommended Health Products
Tags: ovarian cancer, cancer, genetics, women's health, breast cancer
Dear readers, this article about Angelina Jolie's decision to also have her ovaries removed is well written and informative. It provides educational information that helps to further explain all the options for managing preventative measures related to breast and ovarian cancer.
Taking this measure can be a life saving measure, and I am so proud of her for being proactive and sharing this journey with us. Ovarian cancer is not well understood, underfunded in terms of reaearch, and is the deadliest of all the gynecological cancers.
Bless you Angelina and may you always be healthy and smiling!
............
Angelina Jolie Will Have Ovaries Removed to Lower Chances of Cancer: Report
Actress has already had double mastectomy due to gene linked to high risk for breast, ovarian cancer
May 15, 2013
By Steven Reinberg
HealthDay Reporter
WEDNESDAY, May 15 (HealthDay News) -- Film star Angelina Jolie will have her ovaries removed to help lower her odds for ovarian cancer, People magazine reported Wednesday.
The news comes just a day after Jolie, 37, revealed in an article published on the editorial page of The New York Times that she had undergone a double mastectomy. Jolie wrote that she made the decision after learning she carried a gene, called BRCA1, that is linked to a significantly higher risk for both breast and ovarian cancers.
[See Diet Changes That Might Cut Breast Cancer Risk.]
Now, Jolie "is also planning to undergo surgery to remove her ovaries," an operation known as oophorectomy, according to People.
Jolie's mother, actress Marcheline Bertrand, died of ovarian cancer at the age of 56.
According to the Mayo Clinic, preventive removal of the ovaries can cut the risk of ovarian cancer in a woman with a BRCA mutation by 80 percent to 90 percent.
In the Times article, Jolie said she began the process to have both of her breasts removed in early February.
[See 4 Steps to Take Now to Lower Your Breast Cancer Risk.]
Writing about her mother's nearly 10-year-long battle with cancer, Jolie said: "She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was."
Jolie, who has six children with her companion and fellow film star Brad Pitt, said she often finds herself trying to explain to her children about the disease that killed her mother. "They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a 'faulty' gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer," she wrote.
[See Gaining a Pound a Year After Age 20 Nearly Doubles Women's Breast Cancer Risk.]
The BRCA1 and related BRCA2 genes belong to a class of human genes known as tumor suppressors. According to the U.S. National Cancer Institute, in normal cells, the BRCA1 and BRCA2 genes help to maintain the stability of a cell's genetic material -- called DNA -- and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.
The cancer institute estimates that 14 out of every 1,000 women in the general population will develop ovarian cancer in their lifetime. However, that risk rises steeply among women with mutations in either the BRCA1 or BRCA2 genes to anywhere between 155 to 400 women per 1,000.
These genetic mutations are most commonly found in Jewish women of eastern European descent. Also, Norwegian, Dutch, and Icelandic peoples have higher rates of BRCA1 and BRCA2 mutations, according to the cancer institute.
Dr. Michael Cowher, a breast surgeon at the Cleveland Clinic, said the BRCA mutation doesn't just affect women's breasts or ovaries -- males who carry the genetic mutation face an increased risk of breast and prostate cancers. Also, there's an increased risk of pancreatic cancer in BRCA2 and some BRCA1 carriers, he said.
[See Weight Gain Ups Breast Cancer Risk: 7 Ways to Avoid the Bulge.]
Oophorectomy does come with its own risks for premenopausal women, according to the Mayo Clinic, and the decision should be carefully considered. Risks include bone-thinning (osteoporosis), menopausal symptoms such as hot flashes and an increased risk of heart disease.
The procedure itself "is a generally safe procedure that carries a small risk of complications, including infection, intestinal blockage and injury to internal organs," the Mayo Clinic said.
In regards to Jolie's double mastectomy, experts stressed that breast removal isn't the only choice facing a woman with BRCA mutations. "There are other options they can discuss with their doctor," Cowher said. "These include chemoprevention with medications like tamoxifen, and increased frequency of clinical and image-based screening regimens," he explained.
A double mastectomy involves removing as much "at-risk" tissue as possible to reduce the risk of cancer. The procedure does not, however, guarantee complete protection against cancer, according to the cancer institute.
[See Breast Cancer Chemotherapy: Making Bald Beautiful.]
Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City, called a double mastectomy "the best option for someone who is BRCA-positive."
"The risk of cancer is extremely high and we know that you can watch them, but there is no guarantee that you will catch the cancer at an early stage," she said. "If you have the ability to prevent a cancer, that's probably the best route," Bernik explained.
"Not everyone wants a prophylactic mastectomy and they don't all do that," Bernik said. "But women should certainly be informed."
Bernik said more women are opting for the procedure. "The reconstructive options have improved dramatically over the past 15 years, so women can at least feel confident knowing that if they remove their breasts they will be left with a very good to excellent cosmetic result," she said.
Writing in the Times article, Jolie said, "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
"Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could. I made a decision to have a preventive double mastectomy."
[See Sex After Breast Cancer.]
Jolie said the process of having her breasts removed was finished by late April, and included the reconstruction of both breasts with implants. "There have been many advances in this [reconstruction] procedure in the last few years, and the results can be beautiful," she wrote.
According to the cancer institute, genetic testing can reveal whether a woman carries a BRCA1 or BRCA2 mutation. There are benefits to such testing, whether a woman receives a positive or a negative result. "The potential benefits of a negative result include a sense of relief and the possibility that special preventive checkups, tests, or surgeries may not be needed. A positive test result can bring relief from uncertainty and allow people to make informed decisions about their future, including taking steps to reduce their cancer risk," the agency said.
For her part, Jolie said: "I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don't need to fear they will lose me to breast cancer."
"For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."
[See Free Services for Women With Breast Cancer.]
More information
To learn more about the BRCA1 and BRCA2 mutations, visit Susan G. Komen for the Cure.
Copyright © 2012 HealthDay. All rights reserved.
You might be interested in...
U.S. News Diet Rankings - See What Really Works
Top Recommended Health Products
Tags: ovarian cancer, cancer, genetics, women's health, breast cancer
Tuesday, May 14, 2013
Wednesday, May 08, 2013
Living With Tumors
I had my Doxil last Tuesday. Somehow the extra dose of anti-nausea meds on Saturday and fluids did not stop yesterday's crash. It was really warm in Seattle, but I was just a mess, really sweating, huge headache, terrible nausea. I was bed bound all day.Thank the Lord my sister woke me up to see how I was doing. I have been trying to re-hydrate and settle out a bit.
So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.
My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.
That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.
All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.
if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........
I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.
The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.
My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.
I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.
With prayer and her guidance, my confirmation name is Denise Raphael.
I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.
World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.
I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.
Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.
Raise awareness but also please donate good money towards research and help your sisters in need.
God Bless you
So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.
My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.
That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.
All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.
if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........
I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.
The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.
My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.
I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.
With prayer and her guidance, my confirmation name is Denise Raphael.
I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.
World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.
I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.
Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.
Raise awareness but also please donate good money towards research and help your sisters in need.
God Bless you
Sunday, April 21, 2013
Look For The Helpers "Mr. Rogers"
A day to remember, when the good people rushed in.
On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon. Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured. By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police.
Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process. Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.
The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line. The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April. It was a beautiful day for this most beloved day in Boston.
We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able. God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.
When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA" over and over. We will never back down, ever.
God Bless America
http://www.whitehouse.gov/blog/2013/04/18/face-evil-boston-has-shown-americans-will-lift-what-good
From the whitehouse.gov webpages:
In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)
President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.
In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"
President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."
In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:
After the service, President and Mrs. Obama stopped by Boston's Cathedral High School to thank some of Boston's first responders and volunteers for their tireless efforts over the past few days, and then the President visited patients, their families and hospital staff at Massachusetts General Hospital, while the First Lady stopped by Boston Children’s Hospital and Brigham and Women’s Hospital.
You can watch President Obama's remarks below or on YouTube:
On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon. Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured. By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police.
Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process. Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.
The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line. The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April. It was a beautiful day for this most beloved day in Boston.
We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able. God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.
When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA" over and over. We will never back down, ever.
God Bless America
http://www.whitehouse.gov/blog/2013/04/18/face-evil-boston-has-shown-americans-will-lift-what-good
From the whitehouse.gov webpages:
 |
| President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson) |
In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)
President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.
In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"
President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."
In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:
You’ve shown us, Boston, that in the face of evil, Americans will lift up what’s good. In the face of cruelty, we will choose compassion. In the face of those who would visit death upon innocents, we will choose to save and to comfort and to heal. We’ll choose friendship. We’ll choose love.
Scripture teaches us, “God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” And that’s the spirit you’ve displayed in recent days.
When doctors and nurses, police and firefighters and EMTs and Guardsmen run towards explosions to treat the wounded -- that’s discipline.
When exhausted runners, including our troops and veterans -- who never expected to see such carnage on the streets back home -- become first responders themselves, tending to the injured -- that’s real power.
When Bostonians carry victims in their arms, deliver water and blankets, line up to give blood, open their homes to total strangers, give them rides back to reunite with their families -- that’s love.
That’s the message we send to those who carried this out and anyone who would do harm to our people. Yes, we will find you. And, yes, you will face justice. We will find you. We will hold you accountable. But more than that; our fidelity to our way of life -- to our free and open society -- will only grow stronger. For God has not given us a spirit of fear and timidity, but one of power and love and self-discipline.
You can watch President Obama's remarks below or on YouTube:
Tuesday, April 09, 2013
PTSD And Breast Cancer, Study Opens Healing Doors
Each day brings a repeat of a series of events that are predictably unpredictable. A battle waged not by me but from deep within my mind, an unhealthy response to the fear of death.
Amended April 16, 2013
For several nights last week I had nightmares. One night it was about a gunman in a shopping mall. I plan to write out the dream in a separate post. I really enjoy doing the writing, not so much experiencing the nightmare. The next night another nightmare about my life as a member of the poorer community, and how being in the lower ranges of the rungs on the ladder has created a bit of unwanted stress. Not in the way of having or not having beautiful possessions, but in a way of the struggle for basics. I don't want to leave this earth in debt, and well, not sure what els to say there.
So I saw my psychiatrist yesterday and after further detailing my experiences, a more prominent concern is a Panic Disorder. I had some confusion because I have nightmares on a regular basis, but it was only for a few months after my diagnosis and surgery that I was fearful and enraged. So stress, trauma, potential PTSD would have been short term......but went unaddressed. My rage was a real barrier for me.
Thank you for listening...back to the article.....
Recent research has spoken of such things when it comes to breast cancer.
http://jnci.oxfordjournals.org/content/early/2013/02/21/jnci.djt024.abstract
JNCI J Natl Cancer Inst
(2013)
doi: 10.1093/jnci/djt024
First published online: February 21, 2013
.......
Conclusions Nearly one-quarter of women newly diagnosed with breast cancer reported symptoms consistent with PTSD shortly after diagnosis, with increased risk among black and Asian women. Early identification of PTSD may present an opportunity to provide interventions to manage symptoms.
.......
I am not surprised at all, cancer of any kind is traumatic. If you know me you know I am wondering when this type of research wii be done with females who are diagnosed with ovarian cancer.
If you know my story, like many other stories, the doctors are always completely blown away, shocked that we have ovarian cancer. Those of us ladies who heard whispers that the subtle symptoms did mean something important are always shocked, but in a different way.
It is more of a stunned feeling of disbelief because usually for a significant period of time we were crying out that something is wrong, please find it and fix it. I was told three times that I was too young for this deadly disease.
Well this disease is much less deadly if caught early.
So the stress comes from a doctor finally saying they know what it is and gosh golly I think we need to get you into surgery and rule out ovarian cancer. And awe shucks I sure am sorry. And the shock comes from after learning that after everything but the kitchen sink may need to be removed you must do chemo.
Then the traumatized self does even more research to discover that it is the deadliest of all the gynecological cancers, and we get to read the statistics. Then some of us are repeatedly traumatized because we may be single, may need to move, may not have health insurance, and because the survival rates are not that great, live this yo yo life of wanting to make the most out of every situation and live as long as possible but not make any real long term plans because, well, we have ovarian cancer. Push. Pull. Push. Pull.
Eventually you survive by letting it Be, and know Today. Letting God take the wheel brings about incredible peace.
I do that more and more, and allowing God to be in charge has made this whole ordeal much more of a blessing. But the pain is still here. The cancer is still here.
If I can find a peaceful space to allow myself time to connect the dots and move from "why" to "how" and "what", I use my pain to help others. Each day is a mini hike up the hill. The information about PTSD and breast cancer is enlightening, and brings me hope. Women with ovarian cancer need much more emotional and spiritual support. Hopefully this research will create better resources to directly target the stress of cancer, including ovarian cancer.
I was recently diagnosed with Panic Disorder. It took a very long time to figure out what was going on. I was much more angered than some because I had asked the questions and was denied a CA125 in California. Suffice it to say that I had symptoms, just not any intelligent gynecologist at the time.
Loss of body, threat of loss of life, loss of home, loss of job, loss of money, loss of status, loss of credibility because chemo gave me severe anxiety. Loss of the future. Serious stuff for any person to handle.
For many women the loss of bearing their first child ads an entirely new dimension of suffering. Loss loss loss loss.....pain pain pain and repeated assaults on our bodily functions and mind.
I got punched in the stomach the day after my debulking surgery. I have said this many times, I find the irony classic. Admitted for optimal debulking surgery, not able to get out of bed yet, on oxygen, massive pain killers, just learning I have Stage IIIC ovarian cancer with aggressive tumors and having been living with unbelievable abdominal pain.
How it happened was a technician came in my room to take my blood pressure. My right arm was used. The cuff was a bit too big, but she secured it tightly. After reading the pressure she allowed all the air to escape from the arm cuff. My little arms were not in the way of the tech simply sliding the cuff off of my arm. There was plenty of room and usually that is what the techs or nurses do. This gal was bent on unwrapping the cuff. Velcro always wins and in this case nothing different would have happened. Mind you I am on my back, fresh staples from my sternum to my pubic bone, already crying from the pain, and she Pulls and pulls and pulls and pulls and WHAM! The cuff loosens and suddenly her fist is embedded in my upper abdomen. I heard a wailing sound come out of me that has never since returned. It Hurt Like hell. It hurts to wear a bra to this day.
I yelled and screamed and cried and cursed and and and. They took a report, refused to do an X-ray, and to this day that exact spot is in constant pain. It never ever ever dies. We have done thorough and exhaustive testing and nothing physical is present to cause this never ending pain. So, this abdominal pain is part of my anxiety attack.
Now with the evolving diagnosis of Panic Disorder, the predictable order of events is that area of pain intensifies greatly, nausea rolls in, I get flushed and red, I start to breathe quickly, and the release begins when I am sweating profusely. It takes 5 minutes to 10 minutes from start to get back to the stable level of nausea and fatigue I usually have.
I go through this multiple times per day, multiple triggers are known and other times I have no clues as to why I have this event.
For the longest time it was thought that I was just having hot flashes. Hot flashes are not normally precipitated by severe abdominal pain or nausea.
What I can do is use my talent to pray for others who suffer. I live with cancer and am learning to live with this Panic Disorder. Maybe my medications will be changed, not sure.
The biggest cost has been that I as a person, me Denise, am not always clear with my communication and when I have these attacks, I feel that other people do not know what to do.
Being proactive when in the right situation can go a long way, just saying that I need some air, not to worry, and I grab a really cold cloth to help manage the surge of heat and sweats.
I am just in the beginning stages of learning about this. I take Lorazepam and Effexor XR. I do not want stronger meds right now. My gynonc has been so very supportive of this and does not pressure me to process or handle more than I can. I trust in her. I trust in God I will now also be adding another medication to help.
If you have a story about ovarian cancer and getting a new diagnosis of a mental disorder, depression, anxiety, PTSD, I would like to know.
You are free to post them in the comments section or you can follow me and send me a private email.
Ovarian Cancer and Mental Health are enmeshed together, and it is that along with spiritual, social, financial, community, family and medical support where we address those concerns and create a viable safety net.
God Bless You
Servivorgirl
Amended April 16, 2013
For several nights last week I had nightmares. One night it was about a gunman in a shopping mall. I plan to write out the dream in a separate post. I really enjoy doing the writing, not so much experiencing the nightmare. The next night another nightmare about my life as a member of the poorer community, and how being in the lower ranges of the rungs on the ladder has created a bit of unwanted stress. Not in the way of having or not having beautiful possessions, but in a way of the struggle for basics. I don't want to leave this earth in debt, and well, not sure what els to say there.
So I saw my psychiatrist yesterday and after further detailing my experiences, a more prominent concern is a Panic Disorder. I had some confusion because I have nightmares on a regular basis, but it was only for a few months after my diagnosis and surgery that I was fearful and enraged. So stress, trauma, potential PTSD would have been short term......but went unaddressed. My rage was a real barrier for me.
Thank you for listening...back to the article.....
Recent research has spoken of such things when it comes to breast cancer.
http://jnci.oxfordjournals.org/content/early/2013/02/21/jnci.djt024.abstract
JNCI J Natl Cancer Inst
(2013)
doi: 10.1093/jnci/djt024
First published online: February 21, 2013
.......
Conclusions Nearly one-quarter of women newly diagnosed with breast cancer reported symptoms consistent with PTSD shortly after diagnosis, with increased risk among black and Asian women. Early identification of PTSD may present an opportunity to provide interventions to manage symptoms.
.......
I am not surprised at all, cancer of any kind is traumatic. If you know me you know I am wondering when this type of research wii be done with females who are diagnosed with ovarian cancer.
If you know my story, like many other stories, the doctors are always completely blown away, shocked that we have ovarian cancer. Those of us ladies who heard whispers that the subtle symptoms did mean something important are always shocked, but in a different way.
It is more of a stunned feeling of disbelief because usually for a significant period of time we were crying out that something is wrong, please find it and fix it. I was told three times that I was too young for this deadly disease.
Well this disease is much less deadly if caught early.
So the stress comes from a doctor finally saying they know what it is and gosh golly I think we need to get you into surgery and rule out ovarian cancer. And awe shucks I sure am sorry. And the shock comes from after learning that after everything but the kitchen sink may need to be removed you must do chemo.
Then the traumatized self does even more research to discover that it is the deadliest of all the gynecological cancers, and we get to read the statistics. Then some of us are repeatedly traumatized because we may be single, may need to move, may not have health insurance, and because the survival rates are not that great, live this yo yo life of wanting to make the most out of every situation and live as long as possible but not make any real long term plans because, well, we have ovarian cancer. Push. Pull. Push. Pull.
Eventually you survive by letting it Be, and know Today. Letting God take the wheel brings about incredible peace.
I do that more and more, and allowing God to be in charge has made this whole ordeal much more of a blessing. But the pain is still here. The cancer is still here.
If I can find a peaceful space to allow myself time to connect the dots and move from "why" to "how" and "what", I use my pain to help others. Each day is a mini hike up the hill. The information about PTSD and breast cancer is enlightening, and brings me hope. Women with ovarian cancer need much more emotional and spiritual support. Hopefully this research will create better resources to directly target the stress of cancer, including ovarian cancer.
I was recently diagnosed with Panic Disorder. It took a very long time to figure out what was going on. I was much more angered than some because I had asked the questions and was denied a CA125 in California. Suffice it to say that I had symptoms, just not any intelligent gynecologist at the time.
Loss of body, threat of loss of life, loss of home, loss of job, loss of money, loss of status, loss of credibility because chemo gave me severe anxiety. Loss of the future. Serious stuff for any person to handle.
For many women the loss of bearing their first child ads an entirely new dimension of suffering. Loss loss loss loss.....pain pain pain and repeated assaults on our bodily functions and mind.
I got punched in the stomach the day after my debulking surgery. I have said this many times, I find the irony classic. Admitted for optimal debulking surgery, not able to get out of bed yet, on oxygen, massive pain killers, just learning I have Stage IIIC ovarian cancer with aggressive tumors and having been living with unbelievable abdominal pain.
How it happened was a technician came in my room to take my blood pressure. My right arm was used. The cuff was a bit too big, but she secured it tightly. After reading the pressure she allowed all the air to escape from the arm cuff. My little arms were not in the way of the tech simply sliding the cuff off of my arm. There was plenty of room and usually that is what the techs or nurses do. This gal was bent on unwrapping the cuff. Velcro always wins and in this case nothing different would have happened. Mind you I am on my back, fresh staples from my sternum to my pubic bone, already crying from the pain, and she Pulls and pulls and pulls and pulls and WHAM! The cuff loosens and suddenly her fist is embedded in my upper abdomen. I heard a wailing sound come out of me that has never since returned. It Hurt Like hell. It hurts to wear a bra to this day.
I yelled and screamed and cried and cursed and and and. They took a report, refused to do an X-ray, and to this day that exact spot is in constant pain. It never ever ever dies. We have done thorough and exhaustive testing and nothing physical is present to cause this never ending pain. So, this abdominal pain is part of my anxiety attack.
Now with the evolving diagnosis of Panic Disorder, the predictable order of events is that area of pain intensifies greatly, nausea rolls in, I get flushed and red, I start to breathe quickly, and the release begins when I am sweating profusely. It takes 5 minutes to 10 minutes from start to get back to the stable level of nausea and fatigue I usually have.
I go through this multiple times per day, multiple triggers are known and other times I have no clues as to why I have this event.
For the longest time it was thought that I was just having hot flashes. Hot flashes are not normally precipitated by severe abdominal pain or nausea.
What I can do is use my talent to pray for others who suffer. I live with cancer and am learning to live with this Panic Disorder. Maybe my medications will be changed, not sure.
The biggest cost has been that I as a person, me Denise, am not always clear with my communication and when I have these attacks, I feel that other people do not know what to do.
Being proactive when in the right situation can go a long way, just saying that I need some air, not to worry, and I grab a really cold cloth to help manage the surge of heat and sweats.
I am just in the beginning stages of learning about this. I take Lorazepam and Effexor XR. I do not want stronger meds right now. My gynonc has been so very supportive of this and does not pressure me to process or handle more than I can. I trust in her. I trust in God I will now also be adding another medication to help.
If you have a story about ovarian cancer and getting a new diagnosis of a mental disorder, depression, anxiety, PTSD, I would like to know.
You are free to post them in the comments section or you can follow me and send me a private email.
Ovarian Cancer and Mental Health are enmeshed together, and it is that along with spiritual, social, financial, community, family and medical support where we address those concerns and create a viable safety net.
God Bless You
Servivorgirl
Monday, April 01, 2013
Gynecology Oncologist the Only Surgeon For Us
The hum of the IV pump is soothing .....purrrrrrrrrrrrrrr dzt purrrrrrrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt purrrrrrrrrrrrrr dzt. purrrrrrrrrrrrr dzt
Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.
I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.
I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....
My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.
Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.
My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.
A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.
Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.
He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.
Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.
My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.
So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.
Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY
My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.
During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun
The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.
I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.
I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.
Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.
Thank you God for my loving family and friends. Thank you Arnie.
It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.
If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.
So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.
My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.
One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.
I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.
Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.
I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.
A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.
Happy Easter and much love to my family and friends.
I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.
Love,
Denise
Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.
I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.
I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....
My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.
Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.
My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.
A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.
Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.
He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.
Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.
My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.
So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.
Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY
My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.
During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun
The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.
I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.
I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.
Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.
Thank you God for my loving family and friends. Thank you Arnie.
It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.
If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.
So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.
My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.
One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.
I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.
Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.
I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.
A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.
Happy Easter and much love to my family and friends.
I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.
Love,
Denise
Tuesday, March 12, 2013
Urgent: One Third of OVCA Patients Receive Proper Surgery and Treatment
http://www.nytimes.com/2013/03/12/health/ovarian-cancer-study-finds-widespread-flaws-in-treatment.html?pagewanted=all&_r=1
From The New York Times and The Society of Gynecologic Oncology.
Thank you Libby's Hope for letting me know of this significant study.
March 11, 2013 Widespread Flaws Found in Ovarian Cancer Treatment By DENISE GRADY
Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.
From The New York Times and The Society of Gynecologic Oncology.
Thank you Libby's Hope for letting me know of this significant study.
March 11, 2013 Widespread Flaws Found in Ovarian Cancer Treatment By DENISE GRADY
Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.
The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.
Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.
“If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” said Dr. Robert E. Bristow, the director of gynecologic oncology at the University of California, Irvine, and lead author of the new study presented on Monday at a meeting of the Society of Gynecologic Oncology in Los Angeles.
The study found that only a little more than a third of patients received the best possible care, confirming a troubling pattern that other studies have also documented.
Karen Mason, 61, from Pitman, N.J., had been a nurse for 28 years when she was found to have ovarian cancer in 2001. She scheduled surgery with her gynecologist, who was not a cancer surgeon.
But her sisters would not allow it. They had gone on the Internet, and became convinced — rightly, according to experts — that she should go to a major cancer center.
“They took the reins out of my hands,” Ms. Mason said.
She wound up having a long, complicated and successful operation performed by a gynecologic oncologist, which she does not believe her gynecologist could have done.
Dr. Barbara A. Goff, a professor of gynecologic oncology at the University of Washington, in Seattle, who was not part of Dr. Bristow’s study, said the problem with ovarian cancer care was clear: “We’re not making the most use of things that we know work well.”
What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improves if women have surgery called debulking, to remove all visible traces of the disease. Taking out as much cancer as possible gives the drugs a better chance of killing whatever is left. The surgery may involve removing the spleen, parts of the intestine, stomach and other organs, as well as the reproductive system.
The operations should be done by gynecologic oncologists, said Dr. Deborah Armstrong of Johns Hopkins University, who is not a surgeon. But many women, she said, are operated on by general surgeons and gynecologists.
Some women prefer the obstetricians who delivered their children. Many are desperate to start treatment and think there is no time to find a specialist. Some do not know that gynecologic oncologists exist. Some inexperienced doctors may find the cancer unexpectedly during surgery and try to remove it, but not do a thorough job.
“If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.” <9> One patient advocacy group, the Ovarian Cancer National Alliance, ranks the availability of a gynecologic oncologist as one of its criteria in comparing the quality of care among states.
Surgeons who lack expertise in ovarian cancer should refer women to specialists if the women are suspected to have the disease, but often do not, Dr. Goff said.
Dr. Bristow’s research, which has been submitted to a medical journal but not yet published, was based on the medical records of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. They had the most common type, called epithelial. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network, an alliance of 21 major cancer centers with expert panels that analyze research and recommend treatments. The guidelines for ovarian cancer specify surgical procedures and chemotherapy, depending on the stage of the disease.
Surgeons who operated on 10 or more women a year for ovarian cancer, and hospitals that treated 20 or more a year, were more likely to stick to the guidelines, the study found. And their patients lived longer. Among women with advanced disease — the stage at which ovarian cancer is usually first found — 35 percent survived at least five years if their care met the guidelines, compared with 25 percent of those whose care fell short.
But most of the women in the study, more than 80 percent, were treated by what the researchers called “low-volume” providers — surgeons with 10 or fewer cases a year, and hospitals with 20 or fewer.
Dr. Bristow said women should ask surgeons how often they operate on women with ovarian cancer and how often they achieve complete debulking. But he also acknowledged that many patients hesitate to ask for fear of offending the doctor who may operate on them.
Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.
And most ovarian cancers are extremely sensitive to chemotherapy, experts said.
In 2006, a study was published that many doctors thought would change the field forever. It compared standard intravenous chemotherapy with a regimen that pumped the drugs directly into the abdomen. The test regimen was highly toxic, and not all patients could tolerate it. But median survival on it was 65.6 months, compared with 49.7 months on the standard treatment — a survival difference of 15.9 months.
The gain was huge, almost unheard of. New cancer drugs are often approved if they buy patients just a few months. The test treatment — called intraperitoneal, or IP therapy — did not even use new drugs. It just gave the old ones in a different way. Several previous studies had had similar findings for IP therapy, but the 2006 study, led by Dr. Armstrong, had the most definitive results.
The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it. Cancer specialists predicted that the announcement would lead to widespread changes in treatment. Expert guidelines said it should be offered to every patient considered strong enough to endure it.
Seven years later, Dr. Armstrong and other physicians said, IP therapy still has not caught on.
Part of the reason may involve money, Dr. Armstrong said. With IP chemotherapy, patients also need a lot of intravenous fluids, which means unusually long treatment sessions. Oncologists are paid for treatments, not for time, so for those in private practice, long sessions can eat away at income.
“You don’t make a lot of money with somebody in the chair getting IV fluids,” Dr. Armstrong said. “Chair time is money. I’m being a cynic here, but I think that is part of the issue.”
Dr. Goff said: “Where I live, in the Pacific Northwest, IP chemotherapy is pretty much only being done in the major medical centers, and by very few private-practice oncologists. Many say it’s too difficult, and they don’t even offer it to patients, which I think is unethical.”
Ms. Mason had six hours of surgery at the Fox Chase Cancer Center in Philadelphia, with a gynecologic oncologist. The cancer had spread to lymph nodes, and was Stage 3. The surgeon removed her ovaries, fallopian tubes, various lymph nodes, uterus, cervix and omentum (part of the tissue that lines the inside of the abdomen).
“Ovarian cancer looks like Rice Krispies all over the place,” Ms. Mason said. “She spent most of the time picking out each little visible Rice Krispy, and left nothing behind that she could see with her naked eye.”
Then, Ms. Mason had chemotherapy (not IP, because it was not being done at the time). The disease has not recurred. Had she stuck with the first doctor, she believes, “I would be gone.”
“I feel so strongly about letting women know that you need to get to a center of excellence,” Ms. Mason said. “It’s shocking to think it’s still not happening.”
..............
Thanks to a very wise hematology oncologist in California, where I had my surgery, I was referred to a gynecology oncologist for my debulking surgery. I was optimally debulked and received aggressive chemotherapy. Although I am in a recurrence and on chemo again, I am alive! Had I followed the initial referral to a regular surgeon, I would not be here. Thanking God for that.
When will basic OB/GYN and PCP professionals get it? My care here in Seattle is great. The SCCA takes very good care of me.
Saturday, March 09, 2013
They Just Disappeared
I am almost 50 years old, well in a year and half I'll be 50. Thinking now about all the people I can remember who I know or knew. Wow, it is truly fascinating to think of what now lies beyond the magnitude of our reach. Each soul on earth is valuable beyond measure.
I had a weird scare this past week and thought there was something else wrong with me. No details needed, just suffice to say that I was freaked. I was not hallucinating or imagining these spots that I saw. I was worried it was a new cancer, along with another unpleasant issue.
I prayed and prayed. I wrote to my faithful ovarian sisters about the distress. I asked my mom and sister for support. It was so reassuring to ask other people and be calmed by their perspective. Many said not to worry, it is probably something simple. Probably not more cancer or new cancer.
I remind you that it was not an illusion the spots I saw. There were three. I was certain that it could be a melanoma. They could not be washed away. They were there.
Most of my life I have felt fairly undeserving of goodness. Each new day that arrives brings to me another opportunity to love God more and more. With each new realization of His grace I recognize how much more I can do. I love God so much. I get so surprised when my prayers are answered, not because I lack faith in Him, but because I just don't feel like I deserve it.
Within 2 days I was seen for an examination. I was very nervous. After a thorough examination I was told that there is nothing new and there are no spots anywhere. I didn't believe her. I looked and looked for myself and found nothing. Nothing. The spots were gone. I was so shocked and relieved and thankful.
The only thing that can be said is that the people I love were sending prayers and well wishes to God. Even if it was not a conscious prayer, it was heard. There is no other explanation for the spots to have disappeared. I am so grateful for the prayers and of course to God.
Even if you are not sure of God, ask for His help.
I am excited that I could be here for my 50th birthday and look forward to being of value to my family and friends, my neighbors and community.
Thank you for being there.
Love,
Denise
I had a weird scare this past week and thought there was something else wrong with me. No details needed, just suffice to say that I was freaked. I was not hallucinating or imagining these spots that I saw. I was worried it was a new cancer, along with another unpleasant issue.
I prayed and prayed. I wrote to my faithful ovarian sisters about the distress. I asked my mom and sister for support. It was so reassuring to ask other people and be calmed by their perspective. Many said not to worry, it is probably something simple. Probably not more cancer or new cancer.
I remind you that it was not an illusion the spots I saw. There were three. I was certain that it could be a melanoma. They could not be washed away. They were there.
Most of my life I have felt fairly undeserving of goodness. Each new day that arrives brings to me another opportunity to love God more and more. With each new realization of His grace I recognize how much more I can do. I love God so much. I get so surprised when my prayers are answered, not because I lack faith in Him, but because I just don't feel like I deserve it.
Within 2 days I was seen for an examination. I was very nervous. After a thorough examination I was told that there is nothing new and there are no spots anywhere. I didn't believe her. I looked and looked for myself and found nothing. Nothing. The spots were gone. I was so shocked and relieved and thankful.
The only thing that can be said is that the people I love were sending prayers and well wishes to God. Even if it was not a conscious prayer, it was heard. There is no other explanation for the spots to have disappeared. I am so grateful for the prayers and of course to God.
Even if you are not sure of God, ask for His help.
I am excited that I could be here for my 50th birthday and look forward to being of value to my family and friends, my neighbors and community.
Thank you for being there.
Love,
Denise
Thursday, February 28, 2013
MUGA scan tomorrow
I remember we'll the days of my young adulthood when the only reason I didn't travel or do more was because I didn't want to use up all my vacation. Being naive I thought those kinds of sacrifices would protect me somehow from injustices in the world of work. Hence, no trip to Hawaii, no cruise, no east coast bed and breakfast tour in the fall.
I also recall wondering if I had made the incorrect degree choice for college. I wanted to help people, but not break my back doing it.
How could both of these problems be avoided for other young people?
Encourage them to volunteer doing something related in the same or similar industry, before college. Help them land an unpaid internship the summer of their freshman year in high school.
Really risk it and see if they can wait one year after graduation to either do an internship or travel and work in a job similar to the career they are saying they want to do.
If we wait to do our heavy and important life building travel until we are older, our bodies may not be up to the task. I'm just saying.....
I have a MUGA scan tomorrow at SCCA. http://www.cancer.net/all-about-cancer/cancernet-feature-articles/-tests-and-procedures/muga-scan-what-expect
I have been on Chemo for a year.
I am so tired. I need 12 to 14 hours of sleep per day. I start to feel a tired again after being up for about 8 hours. My body broke out in the last few weeks with all kinds of blisters, yuck. That is also from the chemo. Oh happy day.
Will post again in a few days. Next chemo is March 4th.
Had the best time with mom over weekend watching Flight and Beasts of the Southern Wild. Next is Argo.
love you all lots and thanks for checking in
Denise
Tuesday, February 19, 2013
La La La La La La La La Laaaaaaaaaaaaaaaa
Below is a copy of an interesting article about a pilot study on the effects of music on the health of cancer patients. I am expecting that it will show that people believe to feel better and hope that it will reveal some form of stabilization on the effects of medications. Even better, a reduction of the negative side effects.
To give you an idea, during chemo you are very fortunate if you are receiving your medications in an area that can be closed off and kept quiet. I know that when I get the opportunity to have a bed and a door I am much more relaxed. It is really stressful to hear all the beeping IV alarms and nursing call buttons, other people's TVs and music and conversations and people going up and down the halls.
When the room is quiet, it makes an amazing difference and is very calming. If the environment could be even more improved to offer music, it could help alleviate bad side effects and distract someone from anticipation of side effects as well. (I have an Ipod given to me by my brother, but I forget to bring it sometimes.)
I can also say though for me that 90% of the time I'm sleeping through the bulk of chemotherapy, even if I have not been given benadryl. I am so chronically tired that when I can sleep in a comfy bed and not have to worry about anything because the nurses are right there, I can relax too. I slept 15 hours or so on Sunday again, slept til 1:00 pm today.
I remember when mom was going to dialysis and I just felt terrible for her and the other patients. The dialysis machines sound like slot machines. No joke, not at all. The volume cannot be turned down. Each person on dialysis cannot move their arm during the transfusion. Slight changes in movement or flow or anything cause the machine to sound an alarm, and they sound off constantly.
I am so glad she isn't needing that right now.
Anyway, I digress. I wanted to share this interesting pilot study with you because maybe you can find a way to incorporate music into your life in a therapeutic way if you are receiving chemotherapy or have any major stress in your life.
Love,
Denise
.........................................................
Source: http://www.news-medical.net/
To give you an idea, during chemo you are very fortunate if you are receiving your medications in an area that can be closed off and kept quiet. I know that when I get the opportunity to have a bed and a door I am much more relaxed. It is really stressful to hear all the beeping IV alarms and nursing call buttons, other people's TVs and music and conversations and people going up and down the halls.
When the room is quiet, it makes an amazing difference and is very calming. If the environment could be even more improved to offer music, it could help alleviate bad side effects and distract someone from anticipation of side effects as well. (I have an Ipod given to me by my brother, but I forget to bring it sometimes.)
I can also say though for me that 90% of the time I'm sleeping through the bulk of chemotherapy, even if I have not been given benadryl. I am so chronically tired that when I can sleep in a comfy bed and not have to worry about anything because the nurses are right there, I can relax too. I slept 15 hours or so on Sunday again, slept til 1:00 pm today.
I remember when mom was going to dialysis and I just felt terrible for her and the other patients. The dialysis machines sound like slot machines. No joke, not at all. The volume cannot be turned down. Each person on dialysis cannot move their arm during the transfusion. Slight changes in movement or flow or anything cause the machine to sound an alarm, and they sound off constantly.
I am so glad she isn't needing that right now.
Anyway, I digress. I wanted to share this interesting pilot study with you because maybe you can find a way to incorporate music into your life in a therapeutic way if you are receiving chemotherapy or have any major stress in your life.
Love,
Denise
.........................................................
Source: http://www.news-medical.net/
Study investigates whether music therapy reduces stress in cancer patients
Published on February 19, 2013 at 9:20 PM
A Saint Louis University Cancer Center pilot study is investigating whether music affects the health of cancer patients by soothing them and making them less anxious.
"We can see that some of our cancer patients who are undergoing treatment are showing signs of stress because their blood pressure is higher and respiration rate and pulse is faster than normal. Our goal is to see if music can help bring those vital signs into a more normal range," says Crystal Weaver, SLU Cancer Center's music therapist and a study co-investigator.
"There are a lot of reasons cancer patients feel anxious when they come in for treatment. They may be dealing with unpleasant side effects of medications, such as hair loss or nausea.
Sometimes they are thinking about how their illness impacts their family and finances and their ability to continue working. We want to find the best way to use music, which may not cost as much as other therapies and has no negative side effects, to help reduce their anxiety."
The study looks at three groups of cancer patients - those who hear live music performed during chemotherapy infusions; those who receive music therapy in their hospital or exam rooms; and those who do not have music as part of their treatment.
Researchers will measure the study participants' body responses - blood pressure, pulse and number of breaths taken per minute - and note their answers to a questionnaire developed by psychologists to detect stress. For those patients in the music groups, measurements will be taken before and after they hear music while they are receiving treatment.
Some study participants will hear musicians from the St. Louis Symphony, SLU School of Fine and Performing Arts students and Maryville University music therapy students, who play music in SLU Cancer Center's infusion room.
Others will be able to choose the music they want to hear during a one-on-one session with a music therapist.
"Patients request anything and everything - country, religious, musicals, music that was popular when they were in their teens and 20s. I take the music they like and play it at 66 beats per minute because previous research shows that tempo helped well adults relax," Weaver said.
"A pulse of 60 to 72 beats per minute is considered normal and we're hoping to match our study participant's pulse to the beat of the music. Once the heart rate begins to slow, the patient is more likely to take deeper, slower breathes and his or her blood pressure could drop to a healthy level."
The phenomenon of synchronizing the rhythm of the music to a patient's heart beat is called entrainment. It occurs when one person matches the pace of another so they can walk together or when the pendulums of two clocks near each other swing in the same motion.
Participants in the one-on-one sessions also will receive a specific type of empathetic, nonjudgmental therapy that opens patients up to participate in art and movement therapy with good results, Weaver added.
If the study shows that after music therapy, the pulse, blood pressure or respirations per minutes drop or patients' scores on the questionnaire to detect anxiety improve, more research into the benefits of much therapy will be justified, Weaver said. Future research could hone in on how much anxiety levels decreased after music therapy and how reduced anxiety affects a patient's recovery time, complications and willingness to comply with treatment.
The SLU Cancer Center is the only cancer center in the area to have a full-time music therapist on staff and the first to establish a partnership with the St. Louis Symphony.
Mark Varvares, M.D., SLU Cancer Center director, received a national award in October for his advocacy work for music therapy from the American Music Therapy Association.
Varvares is the principal investigator of the study.
"While there's anecdotal evidence that patients who have music therapy after surgery need less pain medication, this research project is among our first to explore the connection between music and healing," Varvares said. "The pilot cancer music therapy study is a step toward helping us to better understand music's effect on health."
Source: Saint Louis University Cancer Center
Monday, February 04, 2013
'Master' proto-oncogene regulates stress-induced ovarian cancer metastasis
A quote from the article:
"Building on the Stress-Cancer Connection For the past 13 years, Sood's research efforts have focused on the effects of chronic stress on cancer metastasis. The latest study helps form a more comprehensive picture on the impact of and biological mechanics of chronic stress on ovarian cancer, as well as the role of beta blockers in slowing disease progression. Previous studies have shown:"
I am sort of obsessing a bit on stress, cancer, and how much we need to understand about cancer growth. The article is very interesting and hopefully will motivate all of us to find ways to better manage our stress.
I have my chemotherapy tomorrow and wonder if there has ever been a valid and reliable study where participants were allowed to stay in some sort of retreat, far away from worries and agitators. Would it show significant benefit in comparison to others of same cancer type and age range? Hmmmm
Better yet, lets just assume that stress always makes cancer worse and build up resources for patients, family, caregivers and treatment facilities to simply offer more options to reduce and prevent stress. Why wait for more research on this?
We can feel that stress hurts us. Cancer is a major source of stress on it's own, for the patient and all who love them. The fear of death, the anger, the pain, the losses.
Not long ago I thought "That's what I'll do, I'll start a foundation that raises money to build little health getaways all over the world so people who are sick can get break from this madness". I have no energy for that, but it's a great dream.
I would never turn down an opportunity for our family to have an all out get together at a beautiful place away from the chaos, for just a moment in time, to heal our souls, laugh and play once again. But no matter where we go, we take our pain and our fears with us, unless we find a way towards inner peace.
Forgiveness
I will dream of paradise, heaven on earth and try to remember what my body felt like when I was a kid. I will think about what it's like to be a little baby or toddler, and laugh at all that is silly. I will think of my family and embrace love. I will feel the love of God and believe in His healing. I will have faith. I will keep finding more ways to forgive and pray for forgiveness of my own sins.
Your faith may not be my faith, but not the matter, for it is based in Love.
On a side note:
I may watch "Love Actually" later in the week, maybe before work, too.
It reminds me of the last time I saw it. My sweet sister had come to Sacramento after my initial debulking surgery and one night we just watched the movie. I was in terrible pain and could not walk down stairs. I was stuck up in my rented room. Being with her, getting a much needed reprieve from cancer talk, watching this amazing gem of a movie is one of my most treasured memories.
Good night and love you all.
Denise
Friday, February 01, 2013
Talking about Death....And Living
I have a very special and dear friend in California. She knew me before cancer and before cancer I can honestly say I felt like she was a soul sister. She was my confident and teacher. She still is to this day. When we talk the calls grow into discussions of "important" matters, God, Helping, Living, Peace, Being a change agent in some capacity, doing the best possible, living art, being art, laughing at what cannot be changed and finding love and joy in whatever comes.
Griefwalker by Tim Wilson, National Film Board of Canada
She posted a private message on Facebook of a fascinating video about palliative care. I respect that for some it may not be something you want to see, but if you can, listen. I felt a sense of peace about death after the video, just a little more peace. That peace is priceless. Healthy or not healthy, I believe this short film will bring you something good.
My dear friend brought something very good to me and I want to thank you so much Barb! Hugs and Peace to you.
To you my dearest readers and followers, my heart is with you.
Sunday, January 13, 2013
Change Is Certain
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| My sweet Marilyn, exhausted after watching over me literally all of Saturday into Sunday. She never leaves my side when I'm really sick. My sweet kitty kat... |
Here I am, listening to an MP3 of the Album from "Love Actually." Not the original artists, but it will do. The music from this movie is so perfect, actually. I needed to give myself some down time this evening to partake in an activity not related to cancer or paying bills or cleaning. Over the years I have neglected music, neglected listening to music that makes me happy or want to dance. I have not a clue as to who is hip or popular right now. I used to know all that stuff, but after I got cancer I just lost interest.
Balance is lacking in my life, so one area in desperate need of attention is music, so here we go. I added the amazon cloud player to my roku and will be streaming my favorites, in addition to using Pandora more. Gee, I remember in the early 90's I must have had hundreds of CDs, some old vinyl and even a few 45rpm records. I miss them.
I knew all the songs on all the albums and CDs. I knew the good stuff, not the stuff that got air time, but the real music that you had to look for. It was easier then too. No programming and uploading and downloading and managing a playlist. It was called a record or a CD. You either popped it on top of the record player or put the CD in the CD Player. But, we must adapt to change, whether it's in how we listen to music or cope with an ongoing medical challenge.
I had chemo last Tuesday, after CT scan on Monday and oncology appt prior to chemo on Tues. Last week was just plain old busy. Had to work too and go again to the cancer center on Thursday for hydration and neulasta.
Regretting not getting the extra IV of Emend. It was scheduled for day 5 or 6 post treatment and we weren't there yet. I felt like I was managing, so I went ahead and let it go.
Just like clockwork, I woke up Saturday morning, feeling like a clamp was on my head, nauseous, barely able to get up for water and meds. Slept through to Sunday noon, except to call work twice to call in sick.
It is Sunday night, feeling queasy, but able to be up. My sweet mom bought me some soup, mashed potatoes and flowers. How sweet.
So what did the doctor have to say, you may be wondering?
Well, she had great news! On Lipodox, my tumors are slowly either shrinking or have stopped growing. Progress is defined that we are reversing a trend. We discussed in detail my quality of life, because this last treatment was the 11th treatment in a row. How am I doing on Lipodox was the key question for me to answer. My question was "how is the Lipodox doing?" Everything was clearly answered and I feel good about my decision. I will continue on Lipodox for 2 to 4 months at least. Will see oncologist again in March.
I can manage the side effects, but not without "help". I can't work more than part time and sleep all the time. I do have the option to halt treatment to give me a break but she was fairly clear that if I stopped, even for a bit, I could develop a resistance to Lipodox. That would leave the tumors alone to continue on their path of destruction, not the best idea for now.
I am going to do all I can to support the chemo, possibly ridding my diet completely of process sugars/carbohydrates.
So as I look at my lovely Christmas Tree, listening to "both sides now", I am feeling once again that I need to re-establish my footing. After I take down the tree and tackle some paperwork this week, I am going to work harder on the basics. Sleep, exercise, nutrition, happiness where I can provide it and receive it. Spiritually I feel less whole. Only because I have not gone to mass often enough.
So for those of you who are effected by ovarian cancer (any cancer), first time or recurrence, things change. For better and for worse, it is constant. I have learned since the fall of 2009 that there are predictable outcomes, but may outcomes are positive. I don't put myself in a box anymore, but being too aware of statistics hinders me a bit. Oh well, have to be informed. What I am trying to say is to set aside what doesn't matter, keep good notes and be open and flexible. Trusting your medical team is critical in this process. I fully trust my gynoc-oncologist.
My prayers were answered. Last Tuesday I asked God if he would be kind enough not to give me bad news. I literally said that if the tumors are still there, that is OK, as long as they aren't growing. God is Good.
So the plan is to take each treatment one month at a time, do the best I can to live a healthy life and continue to pray and seek support as needed. I am also getting some additional help for little panic issues, which is very valuable.
Mom is healing, life is getting more stable and all I want is for my family to find peace, joy and love.
I pray each of you find a way to cope with certain change that comes with each new day of our lives.
Love you much,
Denise
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