The weekly Herceptin is going pretty well, but I am tired! Joan
(the nurse at my oncologist's office) told me that people can be tired
as a result of radiation for up to six months--I was not happy to hear
that!!!
I am researching tests I can take to measure whether I am having a
recurrence. I am not thrilled with the thought of continuing the
Herceptin forever, so I want to try to find a way to stop taking it for
awhile. I think I will need it for 12 months though--that seems
to be the standard in the BC world in cases like mine. I hope to go to
every three weeks instead of every week.
I have gotten lots of positive feedback about the BC story I
wrote. And I finally got over the fact that they messed up my
name :-)
Friday, October 28, 2005
October 10, 2005
Cover story I wrote for the October 2005 issue of the Scene, a monthly
publication in the local area. When the story was "promoted" to
the cover story, I was also given the opportunity to design the cover
art (above). Here is the text of the story:
The Past, Present and Future of Breast Cancer
Are we making progress?
By Valerie Nevitt Pfeiffer
While breast cancer death rates for women have remained relatively flat, the number of newly diagnosed breast cancer cases has risen a little over 1% every year since the 1940s. In 1960, a woman had a 1 in 20 chance of developing breast cancer in her lifetime; today her chances have increased to 1 in 7. More than 500 Fox Valley women will be diagnosed with breast cancer this year, and in 2004, I was one of those women.
Receiving a diagnosis like breast cancer is never easy. Many women are devastated by the news, but it surely isn't the death sentence that it once was. Today, even women who have advanced stage breast cancer manage it as a chronic disease, instead of one that requires them to plan their own funerals. Since the day in late November 2004 when I received my breast cancer news, I have taken a much different path than the one taken by women with breast cancer a generation ago. Things have changed for women with breast cancer: they know they can beat the disease, they fight to find the best way to do that, and they are advocates for other women who have or will be diagnosed with breast cancer.
From the 1950s through the 70s and 80s, breast cancer wasn't often discussed in public. Rather than talk openly with friends and co-workers about their condition, most women with breast cancer were careful to conceal it from everyone outside their close circle of friends and family. When a woman was diagnosed with breast cancer, she listened to her doctor, asked few questions, and didn't mention her condition publicly after she walked out the door. And unlike today, a woman diagnosed with breast cancer years ago didn't feel very hopeful about her chances for survival.
In 2005, things are different. The death rate for women with breast cancer is lower, and awareness of the disease is at an all-time high. Pink ribbons are ubiquitous, including car bumpers, yogurt caps and candy packages. Women with breast cancer are likely to talk about it with whomever will listen. Popular media has also done its part to bring breast cancer issuesinto the forefront. Who can forget the episodes of "Sex in the City" after Samantha's breast cancer diagnosis, when she donned a variety of wigs after losing her hair to chemo, or when she tore off her wig in sweat and frustration while giving a speech to a tuxedo-clad dinner crowd?
In the Family
One former Oshkosh family dealt with breast cancer through life and death and several of the women later became strong advocates for breast cancer awareness. In February 1978, Mary Kay Brown found a small lump in her breast. She was 39, the mother of five children, and very physically active. Her doctor wasn't concerned about the lump, but just a few months later, the tumor had grown, and surgery took place that June. By then, however, the damage was done. In the late 70s, chemotherapy was crude, toxic to the rest of the body, and not as effective as it is today. Brown endured three years of chemo and radiation, and fought the disease until 1982 when her cancer spread to her lungs and brain, causing her death. Unlike other women of her generation, Mary Kay communicated openly about breast cancer with her friends and family and chose stylish scarves and headpieces instead of wigs.
Her four daughters were concerned about the hereditary nature of breast cancer, but their concern was heightened in 1996 when Maggy, Mary Kay's third child, was diagnosed with breast cancer at age 31. During her surgery they found that her tumor was larger than expected and it was located against her chest wall, making a successful surgical outcome difficult. Maggy had chemo, then a bone marrow transplant, then radiation. Three months later, her breast cancer had spread to her brain, and four months later she was dead. Because of the rapid rate at which researchers are developing new treatments, if Maggy's diagnosis had come just a few years later, her treatment recommendations and outcome may have been very different.
Julie Brown successfully battled breast cancer after her sister's death, and Mary Kay's other daughters, Betsy and Becky, chose to have their breasts removed before the disease could catch up with them. Their only brother, Henry, has a daughter who will also live with an increased risk of contracting breast cancer. In 2002, Betsy Brown, a poet who now lives in Minneapolis, published a collection of poems entitled "Year of Morphines," which was her way of expressing her frustration with her family's experiences. Julie lives in Colorado and is an outspoken advocate on breast cancer issues.
The Brown girls exemplify the biggest generational difference in breast cancer patients today. Thirty years ago, women battled breast cancer quietly, and today many women feel the need to do something other than simply beat the disease. Christine Druther had a Stage IV breast cancer recurrence ten years after her Stage I tumor was removed in 1990 (see Staging illustration). Rather than do nothing after beating cancer in her brain and lungs, she and her husband started a website dedicated to sharing information among women with her type of breast cancer. Their website is highly respected by breast cancer industry professionals, and has helped countless women around the world get information they need to help fight their disease.
Risk Factors
Family history plays a significant role in a woman's breast cancer risk, but only about ten percent of the women diagnosed have a family history. Other factors that are believed to contribute to breast cancer incidence include poor diet, smoking, exposure to radiation, exposure to harmful chemicals in the environment or their food, alcohol intake (even modest amounts), lack of exercise…the list goes on. Since her recovery from breast cancer surgery and chemotherapy in 2003, Brenda Nelson has completely changed her diet. She buys organic food products and is strict about the types of products she puts on her skin. While is little scientific research to quantify the exact foods that decrease a woman's chances of developing breast cancer, one can't argue with the logic of avoiding the chemicals and preservatives that are found in most of our food supply. Some also point to the heavy concentration of paper companies in the Fox Valley as a reason that we are at risk for breast and other types of cancer.
The truth is that no one can pinpoint the exact cause of breast cancer in any individual woman, and we aren't close to finding that cause. Dr. Walter Carney of OncoGene Science in Cambridge, Massachusetts, was interviewed via phone about his research into serum testing for treatment of breast cancer. While discussing his research projects, he also touched on his thoughts about the likelihood of discovering a cause relatively soon. "The problem is that all women are genetically different, and it's difficult to determine cause when multiple risk factors are present," Carney said. "Determining cause is a long way off."
It's apparent that breast cancer is an epidemic among women, and some groups feel that research efforts fall woefully short in attempting to determine the root cause. The concern is that plenty of resources are expended on finding new ways to treat breast cancer once it's diagnosed, but little effort is spent trying to understand why certain women get breast cancer in the first place.
According to Breast Cancer Action, a national group whose goal is to "inspire and compel the changes necessary to end the breast cancer epidemic," research programs exist that were designed to liberate science from the constraints of traditional research models so they could be free to move more quickly to invent better treatments and find ways to prevent breast cancer. But with more than $1 billion and 12 years invested in this research, this group thinks that we should be much closer to finding a way to prevent the development of breast cancer in the women of tomorrow.
Are we making enough progress in the fight to wipe out breast cancer before the next generation of women is at risk? For the 800 women in Wisconsin and the 40,000 women nationally who will die from breast cancer this year, the answer is probably not. While progress may seem to move at a snail's pace, especially for those currently living with advanced stage cancers, there have been some impressive advances in breast cancer research since 2000, the year that many secrets to the genetic code were unlocked.
"Part of the problem with cancer treatment research is that bringing new technology to the general population is a time-consuming process," said Carney. "Much is happening in the research community, but it takes so long to get final approval. You have friends with cancer and you know they can't wait around. It's frustrating."
Carney's work is just one of the ways that research will be benefiting women struggling with breast cancer. The serum testing developed by his firm offers early prediction of the success of certain cancer treatments. Oncologists can use this test to determine if the chemo drugs a patient is receiving are doing their job, and if the test shows that they aren't, the chemo mix can be adjusted. For the patient, it means a higher likelihood of a positive outcome.
Another study uses DNA analysis of a blood sample to determine if a patient will have a recurrence of her primary breast cancer. Dr. David Hoon, Director of Molecular Oncology at the John Wayne Cancer Institute in California, also spoke via telephone about his work. "When a woman 'beats' her breast cancer, there isn't a way to be certain whether or not it will return," said Hoon. "With this DNA model, a routine blood test can detect recurrences at early stages of development. Early diagnosis means greater chances of survival."
Research Bringing Results
Hundreds of studies and many clinical trials are in progress that hold promise for women who have breast cancer or who are yet to be diagnosed, including:
• Researchers at Rice University are studying the use of metal nanoshells, spheres measuring just a few billionths of a meter in diameter. The nanoshells are designed to seek out and destroy cancer cells by reacting to a specific wavelength of light that's targeted at them. When the nanoshells are let loose in the woman's body, they find and attach themselves to cancer cells, and doctors to target a harmless beam of light at the body, lighting up the location of breast cancer cells. The nanoshells absorb the light, convert it to heat and destroy the cancer cells.
• Lots of industry buzz in 2005 was about the new wonder drug, Herceptin, and its miraculous effect on tumors that overexpress Her2/neu. Up to one third of breast cancer cells over-express the Her2/neu receptor protein, which continuously "tells" the cancer cell to grow, producing an aggressive cancer that is difficult to stop.
• Individualized, targeted drug therapies are being customized to the patient. Herceptin is one such drug; only women with a specific celltype benefit from it. Other drugs are in development that will be combined with Herceptin and other chemo drugs for specific people based on the pathology of their cancer cells.
• Using immune cells from a sibling, researchers have been able to shrink tumors in patients with Stage IV breast cancer. "The tumors were not completely eliminated, but the responses we saw provide hope that this is worth pursuing," says the study's lead author, Michael Bishop, MD, of the National Cancer Institute's Center for Cancer Research.
• Sentinel node biopsy and other less invasive surgery choices are becoming much more common. Using sentinel node biopsy, the surgeon looks for the lymph node or nodes that are the first stop for anything draining from the tumor area and removes only that node and a few of the adjacent nodes. In the past, if cancer cells were found in the lymph nodes, a woman stood a good chance of losing many nodes, which causes more surgical complications.
• It's possible that by the time today's young girls reach the age when they're at risk for breast cancer, there will be a vaccine available to prevent it. Researchers at the University of Texas M. D. Anderson Cancer Center vaccinated mice that were genetically engineered to develop breast cancer, and none of the mice that received the experimental vaccine developed a tumor. Many other breast cancer vaccine trials are currently underway in research facilities around the country.
• Mammography is still the gold standard for early detection of breast cancer, but it fails to detect some early tumors in pre-menopausal women. Dr. Thomas Nelson, professor of Radiology at the University of California in San Diego, is working on a CT alternative to mammograms for women with breast cancer risk. CT allows an image to be rotated and viewed from multiple angles so a small tumor has a better chance of being noticed. Additionally, MRI is a technology that is being evaluated for early detection of breast cancer.
Breast Cancer on the Local Front
My battle with breast cancer isn't unique. Like many of my contemporaries, I have become educated about the disease, and in the process, I have learned fascinating things about the quality of breast cancer care in the Fox Valley. Wedon't havelarge academic hospitals in our community, nor do we have big-time medical research facilities. However, we are fortunate to have some extremely well-educated medical providers who have sophisticated knowledge of the latest in breast cancer treatment. If you live in the Fox Valley and are diagnosed with breast cancer, you are more fortunate than women in many other parts of the country.
Dr. Carney from OncoGene Science was surprised to hear that neoadjuvant (meaning received before surgery) chemotherapy with Herceptin was being used with patients in our area last December when I began using it. Few providers around the country were using Herceptin for early stage cancers at the time, and even fewer were using it in a neoadjuvant setting. Yet doctors in our comparatively small market were offering it. Ray Georgen MD, a surgeon with Surgical Associates of Neenah, and Jack Swanson MD, an oncologist with Fox Valley Hematology and Oncology, knew well the powers of Herceptin for tumors that overexpress Her2/neu, so before it had become common practice, they started using it for patients with Her2 tumors.
While providers here were using Herceptin with favorable results, women around the country were fighting with their doctors and insurance companies to get Herceptin. Locally, our insurance providers seem to be more open-minded than others. Network Health Plan, an HMO headquartered in Menasha, has stayed informed on the latest treatments, and has approved Herceptin for the patients who need it. Newly-approved drugs can be costly, but insurance companies like Network understand that keeping patients healthy means lower costs in the long run.
The delivery of industry-leading radiation oncology services is another way that the Fox Valley leads other parts of the country. Editha Krueger MD, a radiation oncologist at the ThedaCare Cancer Institute in Appleton has conducted research with some of the national leaders in breast radiation oncology, and offers planning approaches to breast radiation therapy that isn't available in most cities. I worked with Dr. Krueger for radiation therapy after spending a great deal of time researching the latest approaches to breast radiation. A lengthy report requesting to use Dr. Krueger, an out-of-plan provider, was submitted to and approved by Network Health Plan at a time when they did not have a similar provider. The information in the report also led them to send other women with similar radiation needs to Dr. Krueger. This is a commendable action for an HMO and it illustrates the impact on others when one person speaks out about the need for necessary services.
The delivery of radiation services locally will continue to improve when the new partnership between Affinity Health System and the University of Wisconsin Comprehensive Cancer Center in Madison officially gets underway. Physicians with the Cancer Center will work with Affinity physicians and local oncologists to offer new ways of providing radiation oncology to Fox Valley cancer patients. We don't have leading medical research facilities, but we have their services, which is lucky for us.
Despite the fact that research seems slow and wrapped in red tape, access to information is quicker and easier because of the Internet, making it less complicated for a woman diagnosed with breast cancer to find information related to her care (see website chart inset). Most oncologists caution their patients about bad information found online, however the Internet has become extremely useful for finding clinical trials, second opinions, and general information about breast cancer. The Internet has also been used to uncover abuses in the delivery of breast cancer care. A breast cancer patient in Chicago posted a question on Her2support.org, the site created by Joe and Christine Druther, about Herceptin prices. It turned out she was paying much more than people elsewhere, and according to Joe, her efforts caused the hospital to refund overpayments to many patients and insurance companies.
Lyn, a resident of Australia who has battled breast cancer for years, is vocal about her frustration with her government, who won't approve a drug already approved in the U.S. until it conducts its own research and approval process. In the meantime, women are dying. According to Lyn, it wasn't until the Prime Minister's wife had breast cancer that Herceptin became widely available in Australia. "Does our government think that people in the rest of the world are aliens and that their drugs may be harmful to us?" she said via online chat. "Don't they realize we are the same humans as Americans, and that if the drugs work for them, they should work for us?" Yes, one wouldcertainly think so…
Access to talented local physicians doesn't lessen the importance of personal involvement and self-education in the fight against breast cancer –it helps breast cancer patients get better care, and can directly or indirectly impact women diagnosed in the future. Dr. Walt Carney said that in the next ten years it's likely we will learn to manage breast cancer like we do blood pressure: we will manage it and prevent it from becoming a future health problem. Let's hope he's right, because then we can concentrate on finding a way to prevent it.
(c) 2005 Scene Publications--Reprinted with permission
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
SIDE BAR ONE:
Breast Cancer Online
Many oncologists advise patients to stay away from the Internet because it contains too much bogus advice and too many “doom and gloom” statistics. However, the Internet has become an important informational tool for women with breast cancer. Some sites worth visiting:
www.clinicaltrials.gov
Tracks current clinical trials. Helpful for women looking for a trial to join.
www.cancer.gov
Website for the National Cancer Institute, which was the source for statistics in the accompanying story.
www.cancer.org
Official site for the American Cancer Society
www.her2support.org
Website cited in the accompanying story. Offers a board where women can post and reply to questions about Her2 breast cancer (30 to 50% of breast cancer cases).
www.komen.org
Official site for the Susan G. Komen Foundation
www.y-me.org
Support services and educational resources forwomen witbreast cancer.
www.breastcancer.org
A non-profit organization for breast cancer organization; includes some useful discussion boards.
www.bcaction.org
Site for Breast Cancer Action, a breast cancer advocacy site.
(see next entry for SIDEBAR TWO)
(c) 2005 Scene Publications--Reprinted with permission
The Past, Present and Future of Breast Cancer
Are we making progress?
By Valerie Nevitt Pfeiffer
While breast cancer death rates for women have remained relatively flat, the number of newly diagnosed breast cancer cases has risen a little over 1% every year since the 1940s. In 1960, a woman had a 1 in 20 chance of developing breast cancer in her lifetime; today her chances have increased to 1 in 7. More than 500 Fox Valley women will be diagnosed with breast cancer this year, and in 2004, I was one of those women.
Receiving a diagnosis like breast cancer is never easy. Many women are devastated by the news, but it surely isn't the death sentence that it once was. Today, even women who have advanced stage breast cancer manage it as a chronic disease, instead of one that requires them to plan their own funerals. Since the day in late November 2004 when I received my breast cancer news, I have taken a much different path than the one taken by women with breast cancer a generation ago. Things have changed for women with breast cancer: they know they can beat the disease, they fight to find the best way to do that, and they are advocates for other women who have or will be diagnosed with breast cancer.
From the 1950s through the 70s and 80s, breast cancer wasn't often discussed in public. Rather than talk openly with friends and co-workers about their condition, most women with breast cancer were careful to conceal it from everyone outside their close circle of friends and family. When a woman was diagnosed with breast cancer, she listened to her doctor, asked few questions, and didn't mention her condition publicly after she walked out the door. And unlike today, a woman diagnosed with breast cancer years ago didn't feel very hopeful about her chances for survival.
In 2005, things are different. The death rate for women with breast cancer is lower, and awareness of the disease is at an all-time high. Pink ribbons are ubiquitous, including car bumpers, yogurt caps and candy packages. Women with breast cancer are likely to talk about it with whomever will listen. Popular media has also done its part to bring breast cancer issuesinto the forefront. Who can forget the episodes of "Sex in the City" after Samantha's breast cancer diagnosis, when she donned a variety of wigs after losing her hair to chemo, or when she tore off her wig in sweat and frustration while giving a speech to a tuxedo-clad dinner crowd?
In the Family
One former Oshkosh family dealt with breast cancer through life and death and several of the women later became strong advocates for breast cancer awareness. In February 1978, Mary Kay Brown found a small lump in her breast. She was 39, the mother of five children, and very physically active. Her doctor wasn't concerned about the lump, but just a few months later, the tumor had grown, and surgery took place that June. By then, however, the damage was done. In the late 70s, chemotherapy was crude, toxic to the rest of the body, and not as effective as it is today. Brown endured three years of chemo and radiation, and fought the disease until 1982 when her cancer spread to her lungs and brain, causing her death. Unlike other women of her generation, Mary Kay communicated openly about breast cancer with her friends and family and chose stylish scarves and headpieces instead of wigs.
Her four daughters were concerned about the hereditary nature of breast cancer, but their concern was heightened in 1996 when Maggy, Mary Kay's third child, was diagnosed with breast cancer at age 31. During her surgery they found that her tumor was larger than expected and it was located against her chest wall, making a successful surgical outcome difficult. Maggy had chemo, then a bone marrow transplant, then radiation. Three months later, her breast cancer had spread to her brain, and four months later she was dead. Because of the rapid rate at which researchers are developing new treatments, if Maggy's diagnosis had come just a few years later, her treatment recommendations and outcome may have been very different.
Julie Brown successfully battled breast cancer after her sister's death, and Mary Kay's other daughters, Betsy and Becky, chose to have their breasts removed before the disease could catch up with them. Their only brother, Henry, has a daughter who will also live with an increased risk of contracting breast cancer. In 2002, Betsy Brown, a poet who now lives in Minneapolis, published a collection of poems entitled "Year of Morphines," which was her way of expressing her frustration with her family's experiences. Julie lives in Colorado and is an outspoken advocate on breast cancer issues.
The Brown girls exemplify the biggest generational difference in breast cancer patients today. Thirty years ago, women battled breast cancer quietly, and today many women feel the need to do something other than simply beat the disease. Christine Druther had a Stage IV breast cancer recurrence ten years after her Stage I tumor was removed in 1990 (see Staging illustration). Rather than do nothing after beating cancer in her brain and lungs, she and her husband started a website dedicated to sharing information among women with her type of breast cancer. Their website is highly respected by breast cancer industry professionals, and has helped countless women around the world get information they need to help fight their disease.
Risk Factors
Family history plays a significant role in a woman's breast cancer risk, but only about ten percent of the women diagnosed have a family history. Other factors that are believed to contribute to breast cancer incidence include poor diet, smoking, exposure to radiation, exposure to harmful chemicals in the environment or their food, alcohol intake (even modest amounts), lack of exercise…the list goes on. Since her recovery from breast cancer surgery and chemotherapy in 2003, Brenda Nelson has completely changed her diet. She buys organic food products and is strict about the types of products she puts on her skin. While is little scientific research to quantify the exact foods that decrease a woman's chances of developing breast cancer, one can't argue with the logic of avoiding the chemicals and preservatives that are found in most of our food supply. Some also point to the heavy concentration of paper companies in the Fox Valley as a reason that we are at risk for breast and other types of cancer.
The truth is that no one can pinpoint the exact cause of breast cancer in any individual woman, and we aren't close to finding that cause. Dr. Walter Carney of OncoGene Science in Cambridge, Massachusetts, was interviewed via phone about his research into serum testing for treatment of breast cancer. While discussing his research projects, he also touched on his thoughts about the likelihood of discovering a cause relatively soon. "The problem is that all women are genetically different, and it's difficult to determine cause when multiple risk factors are present," Carney said. "Determining cause is a long way off."
It's apparent that breast cancer is an epidemic among women, and some groups feel that research efforts fall woefully short in attempting to determine the root cause. The concern is that plenty of resources are expended on finding new ways to treat breast cancer once it's diagnosed, but little effort is spent trying to understand why certain women get breast cancer in the first place.
According to Breast Cancer Action, a national group whose goal is to "inspire and compel the changes necessary to end the breast cancer epidemic," research programs exist that were designed to liberate science from the constraints of traditional research models so they could be free to move more quickly to invent better treatments and find ways to prevent breast cancer. But with more than $1 billion and 12 years invested in this research, this group thinks that we should be much closer to finding a way to prevent the development of breast cancer in the women of tomorrow.
Are we making enough progress in the fight to wipe out breast cancer before the next generation of women is at risk? For the 800 women in Wisconsin and the 40,000 women nationally who will die from breast cancer this year, the answer is probably not. While progress may seem to move at a snail's pace, especially for those currently living with advanced stage cancers, there have been some impressive advances in breast cancer research since 2000, the year that many secrets to the genetic code were unlocked.
"Part of the problem with cancer treatment research is that bringing new technology to the general population is a time-consuming process," said Carney. "Much is happening in the research community, but it takes so long to get final approval. You have friends with cancer and you know they can't wait around. It's frustrating."
Carney's work is just one of the ways that research will be benefiting women struggling with breast cancer. The serum testing developed by his firm offers early prediction of the success of certain cancer treatments. Oncologists can use this test to determine if the chemo drugs a patient is receiving are doing their job, and if the test shows that they aren't, the chemo mix can be adjusted. For the patient, it means a higher likelihood of a positive outcome.
Another study uses DNA analysis of a blood sample to determine if a patient will have a recurrence of her primary breast cancer. Dr. David Hoon, Director of Molecular Oncology at the John Wayne Cancer Institute in California, also spoke via telephone about his work. "When a woman 'beats' her breast cancer, there isn't a way to be certain whether or not it will return," said Hoon. "With this DNA model, a routine blood test can detect recurrences at early stages of development. Early diagnosis means greater chances of survival."
Research Bringing Results
Hundreds of studies and many clinical trials are in progress that hold promise for women who have breast cancer or who are yet to be diagnosed, including:
• Researchers at Rice University are studying the use of metal nanoshells, spheres measuring just a few billionths of a meter in diameter. The nanoshells are designed to seek out and destroy cancer cells by reacting to a specific wavelength of light that's targeted at them. When the nanoshells are let loose in the woman's body, they find and attach themselves to cancer cells, and doctors to target a harmless beam of light at the body, lighting up the location of breast cancer cells. The nanoshells absorb the light, convert it to heat and destroy the cancer cells.
• Lots of industry buzz in 2005 was about the new wonder drug, Herceptin, and its miraculous effect on tumors that overexpress Her2/neu. Up to one third of breast cancer cells over-express the Her2/neu receptor protein, which continuously "tells" the cancer cell to grow, producing an aggressive cancer that is difficult to stop.
• Individualized, targeted drug therapies are being customized to the patient. Herceptin is one such drug; only women with a specific celltype benefit from it. Other drugs are in development that will be combined with Herceptin and other chemo drugs for specific people based on the pathology of their cancer cells.
• Using immune cells from a sibling, researchers have been able to shrink tumors in patients with Stage IV breast cancer. "The tumors were not completely eliminated, but the responses we saw provide hope that this is worth pursuing," says the study's lead author, Michael Bishop, MD, of the National Cancer Institute's Center for Cancer Research.
• Sentinel node biopsy and other less invasive surgery choices are becoming much more common. Using sentinel node biopsy, the surgeon looks for the lymph node or nodes that are the first stop for anything draining from the tumor area and removes only that node and a few of the adjacent nodes. In the past, if cancer cells were found in the lymph nodes, a woman stood a good chance of losing many nodes, which causes more surgical complications.
• It's possible that by the time today's young girls reach the age when they're at risk for breast cancer, there will be a vaccine available to prevent it. Researchers at the University of Texas M. D. Anderson Cancer Center vaccinated mice that were genetically engineered to develop breast cancer, and none of the mice that received the experimental vaccine developed a tumor. Many other breast cancer vaccine trials are currently underway in research facilities around the country.
• Mammography is still the gold standard for early detection of breast cancer, but it fails to detect some early tumors in pre-menopausal women. Dr. Thomas Nelson, professor of Radiology at the University of California in San Diego, is working on a CT alternative to mammograms for women with breast cancer risk. CT allows an image to be rotated and viewed from multiple angles so a small tumor has a better chance of being noticed. Additionally, MRI is a technology that is being evaluated for early detection of breast cancer.
Breast Cancer on the Local Front
My battle with breast cancer isn't unique. Like many of my contemporaries, I have become educated about the disease, and in the process, I have learned fascinating things about the quality of breast cancer care in the Fox Valley. Wedon't havelarge academic hospitals in our community, nor do we have big-time medical research facilities. However, we are fortunate to have some extremely well-educated medical providers who have sophisticated knowledge of the latest in breast cancer treatment. If you live in the Fox Valley and are diagnosed with breast cancer, you are more fortunate than women in many other parts of the country.
Dr. Carney from OncoGene Science was surprised to hear that neoadjuvant (meaning received before surgery) chemotherapy with Herceptin was being used with patients in our area last December when I began using it. Few providers around the country were using Herceptin for early stage cancers at the time, and even fewer were using it in a neoadjuvant setting. Yet doctors in our comparatively small market were offering it. Ray Georgen MD, a surgeon with Surgical Associates of Neenah, and Jack Swanson MD, an oncologist with Fox Valley Hematology and Oncology, knew well the powers of Herceptin for tumors that overexpress Her2/neu, so before it had become common practice, they started using it for patients with Her2 tumors.
While providers here were using Herceptin with favorable results, women around the country were fighting with their doctors and insurance companies to get Herceptin. Locally, our insurance providers seem to be more open-minded than others. Network Health Plan, an HMO headquartered in Menasha, has stayed informed on the latest treatments, and has approved Herceptin for the patients who need it. Newly-approved drugs can be costly, but insurance companies like Network understand that keeping patients healthy means lower costs in the long run.
The delivery of industry-leading radiation oncology services is another way that the Fox Valley leads other parts of the country. Editha Krueger MD, a radiation oncologist at the ThedaCare Cancer Institute in Appleton has conducted research with some of the national leaders in breast radiation oncology, and offers planning approaches to breast radiation therapy that isn't available in most cities. I worked with Dr. Krueger for radiation therapy after spending a great deal of time researching the latest approaches to breast radiation. A lengthy report requesting to use Dr. Krueger, an out-of-plan provider, was submitted to and approved by Network Health Plan at a time when they did not have a similar provider. The information in the report also led them to send other women with similar radiation needs to Dr. Krueger. This is a commendable action for an HMO and it illustrates the impact on others when one person speaks out about the need for necessary services.
The delivery of radiation services locally will continue to improve when the new partnership between Affinity Health System and the University of Wisconsin Comprehensive Cancer Center in Madison officially gets underway. Physicians with the Cancer Center will work with Affinity physicians and local oncologists to offer new ways of providing radiation oncology to Fox Valley cancer patients. We don't have leading medical research facilities, but we have their services, which is lucky for us.
Despite the fact that research seems slow and wrapped in red tape, access to information is quicker and easier because of the Internet, making it less complicated for a woman diagnosed with breast cancer to find information related to her care (see website chart inset). Most oncologists caution their patients about bad information found online, however the Internet has become extremely useful for finding clinical trials, second opinions, and general information about breast cancer. The Internet has also been used to uncover abuses in the delivery of breast cancer care. A breast cancer patient in Chicago posted a question on Her2support.org, the site created by Joe and Christine Druther, about Herceptin prices. It turned out she was paying much more than people elsewhere, and according to Joe, her efforts caused the hospital to refund overpayments to many patients and insurance companies.
Lyn, a resident of Australia who has battled breast cancer for years, is vocal about her frustration with her government, who won't approve a drug already approved in the U.S. until it conducts its own research and approval process. In the meantime, women are dying. According to Lyn, it wasn't until the Prime Minister's wife had breast cancer that Herceptin became widely available in Australia. "Does our government think that people in the rest of the world are aliens and that their drugs may be harmful to us?" she said via online chat. "Don't they realize we are the same humans as Americans, and that if the drugs work for them, they should work for us?" Yes, one wouldcertainly think so…
Access to talented local physicians doesn't lessen the importance of personal involvement and self-education in the fight against breast cancer –it helps breast cancer patients get better care, and can directly or indirectly impact women diagnosed in the future. Dr. Walt Carney said that in the next ten years it's likely we will learn to manage breast cancer like we do blood pressure: we will manage it and prevent it from becoming a future health problem. Let's hope he's right, because then we can concentrate on finding a way to prevent it.
(c) 2005 Scene Publications--Reprinted with permission
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
SIDE BAR ONE:
Breast Cancer Online
Many oncologists advise patients to stay away from the Internet because it contains too much bogus advice and too many “doom and gloom” statistics. However, the Internet has become an important informational tool for women with breast cancer. Some sites worth visiting:
www.clinicaltrials.gov
Tracks current clinical trials. Helpful for women looking for a trial to join.
www.cancer.gov
Website for the National Cancer Institute, which was the source for statistics in the accompanying story.
www.cancer.org
Official site for the American Cancer Society
www.her2support.org
Website cited in the accompanying story. Offers a board where women can post and reply to questions about Her2 breast cancer (30 to 50% of breast cancer cases).
www.komen.org
Official site for the Susan G. Komen Foundation
www.y-me.org
Support services and educational resources forwomen witbreast cancer.
www.breastcancer.org
A non-profit organization for breast cancer organization; includes some useful discussion boards.
www.bcaction.org
Site for Breast Cancer Action, a breast cancer advocacy site.
(see next entry for SIDEBAR TWO)
(c) 2005 Scene Publications--Reprinted with permission
October 10, 2005 #2 -- SIDEBAR TWO
SIDE BAR TWO:
The Stages of Breast Cancer
Stage 0
Tumor Size: Abnormal or precancerous cells found
Positive Lymph Nodes: None
Metastasis: None
Stage I
Tumor Size: 0-2 cm
Positive Lymph Nodes: None
Metastasis: None
Stage II
Tumor Size: 0-2 cm
Positive Lymph Nodes: Yes
OR
Tumor Size: 2-5 cm
Positive Lymph Nodes: Possible
OR
Tumor Size: > 5 cm
Positive Lymph Nodes: None
Metastasis: None
Stage IIIA
Tumor Size: < 5 cm
Positive Lymph Nodes: Yes/attached to each other or to other tissue
OR
Tumor Size: > 5 cm
Positive Lymph Nodes: Yes
Metastasis: None
Stage IIIB
Tumor Size: Spread into the chestwall or the skin of the breast
Positive Lymph Nodes: Possible
OR
Tumor Size: Any size
Positive Lymph Nodes: Yes-under the breastbone
Metastasis: None
Stage IIIB: Inflammatory
Tumor Size: Any size
Positive Lymph Nodes: Yes. Lymph vessels blocked, causing red, swollen skin
Metastasis: None
Stage IIIC
Tumor Size: Any size
Positive Lymph Nodes: Yes-under breastbone and under the arm OR under or above collarbone
Metastasis: None
Stage IV
Distant metastatic cancer. Tumor has spread to other parts of the body
Recurrent
Tumors have returned after treatment. May recur locally (in the breast or chest wall) or in any other body part (such as bone, liver or lungs)
Source: National Cancer Institute
(c) 2005 Scene Publications--Reprinted with permission
The Stages of Breast Cancer
Stage 0
Tumor Size: Abnormal or precancerous cells found
Positive Lymph Nodes: None
Metastasis: None
Stage I
Tumor Size: 0-2 cm
Positive Lymph Nodes: None
Metastasis: None
Stage II
Tumor Size: 0-2 cm
Positive Lymph Nodes: Yes
OR
Tumor Size: 2-5 cm
Positive Lymph Nodes: Possible
OR
Tumor Size: > 5 cm
Positive Lymph Nodes: None
Metastasis: None
Stage IIIA
Tumor Size: < 5 cm
Positive Lymph Nodes: Yes/attached to each other or to other tissue
OR
Tumor Size: > 5 cm
Positive Lymph Nodes: Yes
Metastasis: None
Stage IIIB
Tumor Size: Spread into the chestwall or the skin of the breast
Positive Lymph Nodes: Possible
OR
Tumor Size: Any size
Positive Lymph Nodes: Yes-under the breastbone
Metastasis: None
Stage IIIB: Inflammatory
Tumor Size: Any size
Positive Lymph Nodes: Yes. Lymph vessels blocked, causing red, swollen skin
Metastasis: None
Stage IIIC
Tumor Size: Any size
Positive Lymph Nodes: Yes-under breastbone and under the arm OR under or above collarbone
Metastasis: None
Stage IV
Distant metastatic cancer. Tumor has spread to other parts of the body
Recurrent
Tumors have returned after treatment. May recur locally (in the breast or chest wall) or in any other body part (such as bone, liver or lungs)
Source: National Cancer Institute
(c) 2005 Scene Publications--Reprinted with permission
Ocotober 10, 2005
(website mentioned below no longer contains this past story--see other posts from October 10 for the story reprint)
Good news! The cover story I wrote for the October Scene is now available atwww.scenenewspaper.com -- when viewing the home page, you will see the cover I designed; you can then click on the "cover story" button to read the story. I am not planning to pick up extra copies of the print version (unfortunately they butchered my name, so its not that important to me to hold on to extra copies), but if you are out of town and would like a copy of the print edition, I will find one and send it to you.
Happy reading :-)
Val
Good news! The cover story I wrote for the October Scene is now available atwww.scenenewspaper.com -- when viewing the home page, you will see the cover I designed; you can then click on the "cover story" button to read the story. I am not planning to pick up extra copies of the print version (unfortunately they butchered my name, so its not that important to me to hold on to extra copies), but if you are out of town and would like a copy of the print edition, I will find one and send it to you.
Happy reading :-)
Val
September 4, 2005
Hi--
Tuesday was my last radiation session. I made it to last Friday without a severe skin reaction. But with two treatments to go, I started getting skin burns (I'm not sure they deserve to be called treatments--you don't feel anything when they are happening, and they didn't hurt the first 5 weeks, but now I don't think of them as much of a treat). The worst part is under my arm, which is bright lobster red. And it hurts! I also have a large triangular-shaped burn area on my chest. The underarm area is particularly tricky, because the skin there is constantly moving. The great thing is that in a couple weeks it will be all better. Until then, loosely-fitting clothing is becoming my friend. I usually wear sleeveless short shirts to my biking classes, but now I need to wear large tshirts so nothing is touching my armpit. The trade-off is that I get too hot wearing that kind of shirt. Oh well, this too shall pass.
My last day of radiation should have been a great day for me, but it was also the day I learned that a friend of mine has a recurrence of her breast cancer. She had a small tumor removed almost 13 years ago, and now she has it back--stage 4. The good news for her is that she is Her2 positive (when she first had cancer, they didn't test for that, and they didn't have Herceptin). So she started yesterday on the same chemo meds that I was on. It's always hard to hear that kind of news--it was bittersweet coming on the same day I was done with my radiation. I stopped by her house on Thursday with some wigs for her to try, and we went online to buy her a wig. I know how all of you felt when you dropped off dinners, gifts, etc. for me...you feel helpless because you can't take the disease away from your friend. So you do anything you can to help, because it's all you can do.
Remember the 80-some page report that I wrote to convince my HMO to allow me to go out of plan to get the specific type of radiation I needed? My radiation oncologist, Edie Krueger (who has become a good friend--she is a really terrific person), told me that because of my report, my health plan has referred other women to her who have cases similar to mine. I'm glad about that--it feels wonderful to know that I have helped other women get the care they need.
I had planned to throw a big party this month to thank all the people who helped us during my treatments. But it looks like we will wait at least a couple months. We finally got the house next door on the market, and the time got away from us a bit. So for now, all I can do is say thanks to all of you who stayed in touch with me and stopped over with a meal or sent a card. I am really hoping that I will not be so much of a home body in 2006!!!
All the best to you all---
Val
Tuesday was my last radiation session. I made it to last Friday without a severe skin reaction. But with two treatments to go, I started getting skin burns (I'm not sure they deserve to be called treatments--you don't feel anything when they are happening, and they didn't hurt the first 5 weeks, but now I don't think of them as much of a treat). The worst part is under my arm, which is bright lobster red. And it hurts! I also have a large triangular-shaped burn area on my chest. The underarm area is particularly tricky, because the skin there is constantly moving. The great thing is that in a couple weeks it will be all better. Until then, loosely-fitting clothing is becoming my friend. I usually wear sleeveless short shirts to my biking classes, but now I need to wear large tshirts so nothing is touching my armpit. The trade-off is that I get too hot wearing that kind of shirt. Oh well, this too shall pass.
My last day of radiation should have been a great day for me, but it was also the day I learned that a friend of mine has a recurrence of her breast cancer. She had a small tumor removed almost 13 years ago, and now she has it back--stage 4. The good news for her is that she is Her2 positive (when she first had cancer, they didn't test for that, and they didn't have Herceptin). So she started yesterday on the same chemo meds that I was on. It's always hard to hear that kind of news--it was bittersweet coming on the same day I was done with my radiation. I stopped by her house on Thursday with some wigs for her to try, and we went online to buy her a wig. I know how all of you felt when you dropped off dinners, gifts, etc. for me...you feel helpless because you can't take the disease away from your friend. So you do anything you can to help, because it's all you can do.
Remember the 80-some page report that I wrote to convince my HMO to allow me to go out of plan to get the specific type of radiation I needed? My radiation oncologist, Edie Krueger (who has become a good friend--she is a really terrific person), told me that because of my report, my health plan has referred other women to her who have cases similar to mine. I'm glad about that--it feels wonderful to know that I have helped other women get the care they need.
I had planned to throw a big party this month to thank all the people who helped us during my treatments. But it looks like we will wait at least a couple months. We finally got the house next door on the market, and the time got away from us a bit. So for now, all I can do is say thanks to all of you who stayed in touch with me and stopped over with a meal or sent a card. I am really hoping that I will not be so much of a home body in 2006!!!
All the best to you all---
Val
August 7, 2005
Radiation has been interesting from the standpoint that I am required
to be at a certain place at a certain time each day. It is a
challenge to be on time every day. But I sense that for the
radiation technicians I am a slightly different patient than the norm.
They sort of laugh when I come in each day-- I fly in there in a rush,
change my clothes in about 25 seconds, kick my shoes in the
corner (and they always have comments about my shoes) and then I hop up
on the table to get my daily dose. Sometimes I haven't had time
for lunch, so I look for the double chocolate freshly baked cookies
that the AMC volunteers put in the waiting room (I know, it's not the
best lunch in the world, but I can address my bad eating habits after
all the treatments are over).
Radiation makes me more tired than chemo, but I am doing OK. I am still teaching my indoor biking class, and I decided that I will start running this week on the days I don't got to the Y -- on top of everything I now have osteoporosis in my hip bone and I have to start some impact work. I'll probably take our semi-retarded younger dog with me (we have two black Standard Poodles, and she is the one that we adopted through a pet rescue group in Kentucky last year--OK so she isn't really retarded, but it sometimes seems that way -- she's a 55-pound stuffed-animal-like creature). I think I will be done with radiation on the 30th.
Charlie and Jane got through their musicals this summer and now football starts for Charlie this week. So it will be busy for us. If any of you know someone who is looking for a house, tell them that the house we bought next door will be on the market within the next week. It is a gorgeous 4-BR, 3-Bath tri level with a great yard and great neighbors (!!)
Radiation makes me more tired than chemo, but I am doing OK. I am still teaching my indoor biking class, and I decided that I will start running this week on the days I don't got to the Y -- on top of everything I now have osteoporosis in my hip bone and I have to start some impact work. I'll probably take our semi-retarded younger dog with me (we have two black Standard Poodles, and she is the one that we adopted through a pet rescue group in Kentucky last year--OK so she isn't really retarded, but it sometimes seems that way -- she's a 55-pound stuffed-animal-like creature). I think I will be done with radiation on the 30th.
Charlie and Jane got through their musicals this summer and now football starts for Charlie this week. So it will be busy for us. If any of you know someone who is looking for a house, tell them that the house we bought next door will be on the market within the next week. It is a gorgeous 4-BR, 3-Bath tri level with a great yard and great neighbors (!!)
August 21, 2005
I have seven more radiation treatments to go – five days next week and
Monday and Tuesday the following week. Just in time for school to
start!
My skin is definitely showing evidence of the radiation treatments. It’s like having a sunburn that gets progressively worse. Your skin certainly takes a beating, but thankfully, as we all know, sunburns do go away. I have special gel stuff to use on the affected area and that seems to help. No peeling like a regular sunburn though; just redness. And I have to use special deodorant on the left side because regular deodorant contains aluminum, which doesn’t react well with radiation.
After the radiation is over I will start getting weekly Herceptin again. While I don’t enjoy the thought of getting an IV every week again, I know through my research that it’s the only possibility for me. I don’t want to make you read my past updates so I’ll recap a bit. I have Her2 positive cells and cancer cells can be either hormone receptor positive or negative. My cells are hormone receptor negative, and that means that the conventional drugs that many women take for 5 years to prevent recurrence after their treatments conclude (such as Tamoxifen) will do nothing for me. Due to my tumor size and the fact that I had positive lymph nodes, there is a very high probability of recurrence, and Herceptin is the only thing that can prevent that from happening. However I have also learned that many women who have Stage I or Stage II Her2+ breast cancer (mine is Stage III) also get weekly Herceptin for a year after their regular treatments. So it’s a major inconvenience but well worth it. And by the time I have been on the Herceptin for another 6 or 9 months, there will hopefully be a vaccine trial for which I will be qualified.
There is probably one thing I have done during radiation that not too many other people have done, but I can’t be sure. I was hired the other day for an all-day photo shoot down in Milwaukee through Meridian Studios in Neenah for Getty Images in NY. I don’t do it often (too time-consuming), but once in awhile I pick up a modeling job through the agency that the kids work through—I really like Sara, the woman who runs it, and I like to help her when I can – but I certainly wasn’t thinking I would do it during my treatments. I worked with another female model and with a guy who looks exactly likeRichard Gere – I had to play the part of his wife – which was interesting, strange, and funny in so many ways (see picture at left--I am not going to leave thuis one up too long because he's not my real husband!). We shot at a farmer’s market, along the riverfront carrying shopping bags and riding bikes, at a sidewalk café, at a book store, and then we did some scenes in exercise clothes along the river. The people who worked the shoot were so talented and I learned a lot from them. I still laugh when I think about the fact that they liked my very short, post-chemo hairstyle – they were going for the “urban chic” look, and, like it or not, that’s what I now apparently have. I told Sara that I can change my look for almost any client she has with all the wigs I now own :-)
I’m not sure that I will have anything interesting to say from this point forward, since I will soon be done with radiation, so I am not sure how often I will write updates. The Herceptin treatments will be non-eventful. I will probably have reconstruction surgery in February or March. I will write updates to the website when there is something to report.
Happy back-to-school!
XXOO
Val
My skin is definitely showing evidence of the radiation treatments. It’s like having a sunburn that gets progressively worse. Your skin certainly takes a beating, but thankfully, as we all know, sunburns do go away. I have special gel stuff to use on the affected area and that seems to help. No peeling like a regular sunburn though; just redness. And I have to use special deodorant on the left side because regular deodorant contains aluminum, which doesn’t react well with radiation.
After the radiation is over I will start getting weekly Herceptin again. While I don’t enjoy the thought of getting an IV every week again, I know through my research that it’s the only possibility for me. I don’t want to make you read my past updates so I’ll recap a bit. I have Her2 positive cells and cancer cells can be either hormone receptor positive or negative. My cells are hormone receptor negative, and that means that the conventional drugs that many women take for 5 years to prevent recurrence after their treatments conclude (such as Tamoxifen) will do nothing for me. Due to my tumor size and the fact that I had positive lymph nodes, there is a very high probability of recurrence, and Herceptin is the only thing that can prevent that from happening. However I have also learned that many women who have Stage I or Stage II Her2+ breast cancer (mine is Stage III) also get weekly Herceptin for a year after their regular treatments. So it’s a major inconvenience but well worth it. And by the time I have been on the Herceptin for another 6 or 9 months, there will hopefully be a vaccine trial for which I will be qualified.
There is probably one thing I have done during radiation that not too many other people have done, but I can’t be sure. I was hired the other day for an all-day photo shoot down in Milwaukee through Meridian Studios in Neenah for Getty Images in NY. I don’t do it often (too time-consuming), but once in awhile I pick up a modeling job through the agency that the kids work through—I really like Sara, the woman who runs it, and I like to help her when I can – but I certainly wasn’t thinking I would do it during my treatments. I worked with another female model and with a guy who looks exactly likeRichard Gere – I had to play the part of his wife – which was interesting, strange, and funny in so many ways (see picture at left--I am not going to leave thuis one up too long because he's not my real husband!). We shot at a farmer’s market, along the riverfront carrying shopping bags and riding bikes, at a sidewalk café, at a book store, and then we did some scenes in exercise clothes along the river. The people who worked the shoot were so talented and I learned a lot from them. I still laugh when I think about the fact that they liked my very short, post-chemo hairstyle – they were going for the “urban chic” look, and, like it or not, that’s what I now apparently have. I told Sara that I can change my look for almost any client she has with all the wigs I now own :-)
I’m not sure that I will have anything interesting to say from this point forward, since I will soon be done with radiation, so I am not sure how often I will write updates. The Herceptin treatments will be non-eventful. I will probably have reconstruction surgery in February or March. I will write updates to the website when there is something to report.
Happy back-to-school!
XXOO
Val
June 12, 2005
On Friday I met with the “second opinion” doc from the UW Cancer Center
in Madison, Dr. Rakesh Patel. The consult went amazingly
well. I won’t get too technical when I explain this, because it’s
a pretty complicated topic. Anyway, I expected our conversation
to center around the different approaches to the planning process for
radiation. But Dr. Patel agreed with the planning process I
presented in my case study. The only thing about which he had a
different opinion was radiating a certain set of nodes. After
consulting with Dr. Edie Krueger in Appleton, I was suggesting that my
radiation be targeted at four areas – and his opinion was slightly
different on one of those areas (after having an email conversation
with Dr. Krueger in Appleton, I found that she did indeed have the same
opinion as Dr. Patel – when we met we just hadn’t gotten into the
details about the possibilities that Dr. Patel mentioned). I am
thrilled that he is in agreement about the treatment planning process –
it really was a great consultation.
The best part was when he wanted to explain one of the concepts, he asked if he could use my report – he used a picture from one of the oncology journal articles in the report to discuss IMRT. Somehow I found that to be gratifying!
And now that my second opinion is the same as the opinion of the local doctor I want to use, Network Health Plan has approved my request to go “out of network” for my radiation treatments. I have an appointment with Dr. Krueger next week. The radiation treatments will start a couple weeks after that; they’ll be five days a week for six weeks. I’m glad I took the time to write a detailed report about the medical care I wanted. Pretty much everyone is saying that they haven’t seen anyone put together such a huge analysis for a health care request before. But you all know that I like to be different, so I’m happy to report that nothing has changed :-)
The consult in Madison wasn’t the only fun thing about Friday. John and I rode down to Madison together (he was on the phone with customers most of the way, but I had my iPod with me for those times – a couple times he had to shoot me a dirty look because I was singing along more loudly than I realized). We went to my friend Jenny Lujan’s (used to be Jenny Brandt for those of you who knew us in high school) for lunch. She lives right outside Madison and has two adorable children. After that we went to the UW Hospital for the consult, then we went to a brew pub for dinner. One the way home we watched the storms and the lightening. That was so cool to watch.
I have my 25-year Neenah High School class reunion this weekend. Another friend, Joan Hardie, is coming here from California, and I’m anxious to see her because I haven’t seen her for a very long time. John isn’t going to the reunion, since last time he went with me to a reunion he ended up pretending he was from our class. Which was funny, but I won’t put him through that again. I can’t believe that it has been 25 years since high school, since I don’t feel that old. Yikes!!!
I have not yet decided what wig to wear to the reunion. I will probably have to decide about the wig at the last minute along with what I will wear. I suppose it will depend on what kind of crazy mood I’m in…
Love
Val
The best part was when he wanted to explain one of the concepts, he asked if he could use my report – he used a picture from one of the oncology journal articles in the report to discuss IMRT. Somehow I found that to be gratifying!
And now that my second opinion is the same as the opinion of the local doctor I want to use, Network Health Plan has approved my request to go “out of network” for my radiation treatments. I have an appointment with Dr. Krueger next week. The radiation treatments will start a couple weeks after that; they’ll be five days a week for six weeks. I’m glad I took the time to write a detailed report about the medical care I wanted. Pretty much everyone is saying that they haven’t seen anyone put together such a huge analysis for a health care request before. But you all know that I like to be different, so I’m happy to report that nothing has changed :-)
The consult in Madison wasn’t the only fun thing about Friday. John and I rode down to Madison together (he was on the phone with customers most of the way, but I had my iPod with me for those times – a couple times he had to shoot me a dirty look because I was singing along more loudly than I realized). We went to my friend Jenny Lujan’s (used to be Jenny Brandt for those of you who knew us in high school) for lunch. She lives right outside Madison and has two adorable children. After that we went to the UW Hospital for the consult, then we went to a brew pub for dinner. One the way home we watched the storms and the lightening. That was so cool to watch.
I have my 25-year Neenah High School class reunion this weekend. Another friend, Joan Hardie, is coming here from California, and I’m anxious to see her because I haven’t seen her for a very long time. John isn’t going to the reunion, since last time he went with me to a reunion he ended up pretending he was from our class. Which was funny, but I won’t put him through that again. I can’t believe that it has been 25 years since high school, since I don’t feel that old. Yikes!!!
I have not yet decided what wig to wear to the reunion. I will probably have to decide about the wig at the last minute along with what I will wear. I suppose it will depend on what kind of crazy mood I’m in…
Love
Val
June 25, 2005
I had my planning session for radiation on Wednesday. They lay
you on this stuff that molds itself to the shape of your body so that
when you return every day for six weeks you are in exactly the same
position. Then the computers analyze your anatomy and record the
details that the radiation oncologist uses to plan the treatment.
They also gave me three pin-prick size tattoos on strategically-located
places on my torso to help them aim the radiation the same way each
session.
I would kinda like to get a regular tattoo when my breast is reconstructed next Spring, but Ray (my surgeon friend) has told me that he is VERY much against that and will “throw his body” between me and the tattoo artist if I try to do it (his words, not mine). Check out the link on the left – Geralyn Lucus is where I got the idea for a tattoo. She worked for 20/20 when she was diagnosed in her late 20s, and she now is with Lifetime Television. Her book is funny, but the part I liked the best is about the tattoo.
I also found out this week that my HLA A2 and A3 are not the right type for the clinical trial in PA. There is another vaccine trial in Seattle that I am watching, and the vaccine nurse in PA told me that the team there is working on another vaccine that isn’t HLA-specific, so I will stay in touch with them. I can’t apply to any of these trials until after my treatments are all concluded anyway. I am researching other options via lit searches online. I hope my oncology clinic isn’t disappointed in me when they start getting mail addressed to Valerie Pfeiffer MD. Some of the searches require you to log in as a doctor. And of course in addition to being a technology geek, I am also a science geek, so I actually want to READ the medical journal articles.
I don’t start radiation for a couple weeks, so I will be taking vacation for a big chunk of time in the next couple weeks. Not sure where we will go (probably close to home – the weather is nice here, no need to travel far, and the kids still have their activities).
Speaking of activities, I told many of you this already—Jane was cast as Cinderella in the summer Theatrix musical, so she is busy learning lines and songs -- remember all the Rogers & Hammerstein songs that Leslie Ann Warren did in that old TV movie? Or more recently I suppose it was Brandy with Whitney Houston. Anyway, Jane is busy with that and Charlie is in Grease a week later, both at the Grand Opera House in Oshkosh. So it’s definitely a full summer :-)
I would kinda like to get a regular tattoo when my breast is reconstructed next Spring, but Ray (my surgeon friend) has told me that he is VERY much against that and will “throw his body” between me and the tattoo artist if I try to do it (his words, not mine). Check out the link on the left – Geralyn Lucus is where I got the idea for a tattoo. She worked for 20/20 when she was diagnosed in her late 20s, and she now is with Lifetime Television. Her book is funny, but the part I liked the best is about the tattoo.
I also found out this week that my HLA A2 and A3 are not the right type for the clinical trial in PA. There is another vaccine trial in Seattle that I am watching, and the vaccine nurse in PA told me that the team there is working on another vaccine that isn’t HLA-specific, so I will stay in touch with them. I can’t apply to any of these trials until after my treatments are all concluded anyway. I am researching other options via lit searches online. I hope my oncology clinic isn’t disappointed in me when they start getting mail addressed to Valerie Pfeiffer MD. Some of the searches require you to log in as a doctor. And of course in addition to being a technology geek, I am also a science geek, so I actually want to READ the medical journal articles.
I don’t start radiation for a couple weeks, so I will be taking vacation for a big chunk of time in the next couple weeks. Not sure where we will go (probably close to home – the weather is nice here, no need to travel far, and the kids still have their activities).
Speaking of activities, I told many of you this already—Jane was cast as Cinderella in the summer Theatrix musical, so she is busy learning lines and songs -- remember all the Rogers & Hammerstein songs that Leslie Ann Warren did in that old TV movie? Or more recently I suppose it was Brandy with Whitney Houston. Anyway, Jane is busy with that and Charlie is in Grease a week later, both at the Grand Opera House in Oshkosh. So it’s definitely a full summer :-)
May 27, 2005
Only three more chemo sessions to go. This week was a bit
tougher; I seem to be experiencing more nausea now. Yesterday I
felt like crap, so I ate oyster crackers most of the day. It’s
like being pregnant without choosing names and getting a big belly.
I think I am finally done with the shoe addiction. John looked at me the other day and said, quietly and politely, “No more shoes.” I knew he was right, but I did need to tell him that, while I am not ordering any more shoes, a few more pairs may be arriving in the mail. Stopping is OK – I have a kick-ass collection of shoes right now. However if you’re a chick, you know how it goes…no matter how many shoes you have, you will end up with an outfit that you just don’t have the perfect shoes to match. But I will muddle through somehow….
I am down to 8 wigs at this point. I sent one of them to my mother-in-law’s friend, Janice. Janice has been battling cancer for awhile now, but had never worn a wig. She recently acquired a grey/silver one, so I thought she should have a red one too (it was one of the wigs I never photographed for this website). And I donated another one back to the program at one of the hospitals; it was the first one I bought that looked like the haircut I had at diagnosis….why would I want to look like that when I have so many other options now?? These were two wigs that I found myself never choosing to wear – I am much more fond of the others.
Happy Memorial Day!
Love
Val
I think I am finally done with the shoe addiction. John looked at me the other day and said, quietly and politely, “No more shoes.” I knew he was right, but I did need to tell him that, while I am not ordering any more shoes, a few more pairs may be arriving in the mail. Stopping is OK – I have a kick-ass collection of shoes right now. However if you’re a chick, you know how it goes…no matter how many shoes you have, you will end up with an outfit that you just don’t have the perfect shoes to match. But I will muddle through somehow….
I am down to 8 wigs at this point. I sent one of them to my mother-in-law’s friend, Janice. Janice has been battling cancer for awhile now, but had never worn a wig. She recently acquired a grey/silver one, so I thought she should have a red one too (it was one of the wigs I never photographed for this website). And I donated another one back to the program at one of the hospitals; it was the first one I bought that looked like the haircut I had at diagnosis….why would I want to look like that when I have so many other options now?? These were two wigs that I found myself never choosing to wear – I am much more fond of the others.
Happy Memorial Day!
Love
Val
June 2, 2005
HUGE DAY!!! My chemo days are pretty much over! Today I got
Herceptin only and ditto for the next two weeks. Then I’m
done! And no more Carboplatin or Taxol ever again! Those
are the drugs that cause hair loss, nausea, etc. Herceptin makes
me tired the day I get it but that’s about it.
The other big news is that I had my PET scan yesterday and there is no sign of cancer anywhere in my body right now. I need that “all clear” info for the clinical trial in Pennsylvania that I want to join, because to qualify you have to show that you have “no evidence of disease” (NED).
The next step is meeting with the radiation oncologist in Madison on June 10 for a second opinion. Daily (5 days/week) radiation treatments will start sometime between the end of June and mid-July in Appleton and will last six weeks. After that I can officially apply for the trial in PA. Some of the technicalities of my radiation planning process are uncertain, but that will get decided after the 10th.
I will be on some sort of cancer drug for five years after everything is over, but that is standard for breast cancer patients.
I am so happy right now! Life is good :- )
love and happiness to you!
Val
The other big news is that I had my PET scan yesterday and there is no sign of cancer anywhere in my body right now. I need that “all clear” info for the clinical trial in Pennsylvania that I want to join, because to qualify you have to show that you have “no evidence of disease” (NED).
The next step is meeting with the radiation oncologist in Madison on June 10 for a second opinion. Daily (5 days/week) radiation treatments will start sometime between the end of June and mid-July in Appleton and will last six weeks. After that I can officially apply for the trial in PA. Some of the technicalities of my radiation planning process are uncertain, but that will get decided after the 10th.
I will be on some sort of cancer drug for five years after everything is over, but that is standard for breast cancer patients.
I am so happy right now! Life is good :- )
love and happiness to you!
Val
May 19, 2005
Today was Herceptin only because my counts were down a bit. We are going to
John's nephew's wedding this weekend, so this will make it easier for me. I am a lucky girl :-)
John's nephew's wedding this weekend, so this will make it easier for me. I am a lucky girl :-)
May 18, 2005
New picture -- more of the wigs. I have two others that I haven't photographed, but I don't like either of them that much.
Today I was supposed to have a PET scan. Some of you may think it means that I needed my head examined now that we have four (yes, four) animals living in our home. No, a PET scan is really a total body scan that looks for bunches of cancer cells; I had one at the time of my diagnosis also. Unfortunately because I taught spin this morning I couldn’t do the test. Vigorous exercise prior to the test makes all the sugar stuff they inject into you go to the recently active muscles instead of the places that have cancer cells. So now I wait two weeks for the test truck to come back.
There isn't much concern that this test will find anything. My first scan was clean (except for the breast and some slight node activity). Since that scan I have had a lot of chemo, so it's a good bet that this scan will be clean. It's the scan one year from now that I will be more curious about.
And we really do have four pets now. John and Jane have been scheming for months to find another cat -- this was news to me! I have to say they found a pretty good one. He acts more like a dog. We got him from PetsMart, who allows the humane society of Waupaca County to offer pets for adoption at their store.
He is a black, long-haired cat named Iggy.
I put a link on this site to some info about breast cancer legislation – it has to do with eliminating the practice of sending women home 24 hours after their mastectomies. It’s one of those things that has been circulating via email forwards lately. Julie Waite asked me about it and I decided to look into it. It turns out that it’s a fairly current effort. Check it out if you have time. (If you read to the end I also included a funny email that was passed to me--I edited it for length.)
I dropped off my proposal to 13 different people on Monday. I am referring to the proposal to my HMO to allow me to use out-of-network services for my radiation. It turned out to be over 60 pages long (I didn’t really count the pages – there were quite a few medical journal articles and those pages weren’t numbered). The medical director of the HMO called me right away that same day. He told me that they won’t send me out of town for my daily radiation (which would be totally illogical). He asked me if I’d be willing to get a second opinion from a guy down at the UW Comprehensive Cancer Center. Of course I agreed. Since I will get services locally, I will probably be getting them from the person I want to get them from (Affinity’s radiation oncologists are leaving so they won’t have any local people) so it’s a great benefit for me to get a second opinion…just to see what the guy says. I will end up asking him to talk to the provider up here whom I will use. They can compare notes and I will end up with the best possible care! While I am not quite done with this because I don’t have a final answer yet, it looks like it pays to write a thesis about your medical case to make sure you get what you need.
Today is chemo day and there are only four more after this! Once I get my radiation situation figured out, then that will be the next phase. After six weeks of that, then I will send in all my stuff to PA for that clinical trial. Reconstruction will happen sometime after that.
I have been feeling pretty well, but I get tired in the afternoon. My assistant is off this week and I can’t wait for her to come back. Things at work are crazy-busy! I feel like I am missing so much news this time, but I will write more some other day when my head is clearer. Writing that report for the HMO took a lot out of me I guess!
Love
Val
Today I was supposed to have a PET scan. Some of you may think it means that I needed my head examined now that we have four (yes, four) animals living in our home. No, a PET scan is really a total body scan that looks for bunches of cancer cells; I had one at the time of my diagnosis also. Unfortunately because I taught spin this morning I couldn’t do the test. Vigorous exercise prior to the test makes all the sugar stuff they inject into you go to the recently active muscles instead of the places that have cancer cells. So now I wait two weeks for the test truck to come back.
There isn't much concern that this test will find anything. My first scan was clean (except for the breast and some slight node activity). Since that scan I have had a lot of chemo, so it's a good bet that this scan will be clean. It's the scan one year from now that I will be more curious about.
And we really do have four pets now. John and Jane have been scheming for months to find another cat -- this was news to me! I have to say they found a pretty good one. He acts more like a dog. We got him from PetsMart, who allows the humane society of Waupaca County to offer pets for adoption at their store.
He is a black, long-haired cat named Iggy.
I put a link on this site to some info about breast cancer legislation – it has to do with eliminating the practice of sending women home 24 hours after their mastectomies. It’s one of those things that has been circulating via email forwards lately. Julie Waite asked me about it and I decided to look into it. It turns out that it’s a fairly current effort. Check it out if you have time. (If you read to the end I also included a funny email that was passed to me--I edited it for length.)
I dropped off my proposal to 13 different people on Monday. I am referring to the proposal to my HMO to allow me to use out-of-network services for my radiation. It turned out to be over 60 pages long (I didn’t really count the pages – there were quite a few medical journal articles and those pages weren’t numbered). The medical director of the HMO called me right away that same day. He told me that they won’t send me out of town for my daily radiation (which would be totally illogical). He asked me if I’d be willing to get a second opinion from a guy down at the UW Comprehensive Cancer Center. Of course I agreed. Since I will get services locally, I will probably be getting them from the person I want to get them from (Affinity’s radiation oncologists are leaving so they won’t have any local people) so it’s a great benefit for me to get a second opinion…just to see what the guy says. I will end up asking him to talk to the provider up here whom I will use. They can compare notes and I will end up with the best possible care! While I am not quite done with this because I don’t have a final answer yet, it looks like it pays to write a thesis about your medical case to make sure you get what you need.
Today is chemo day and there are only four more after this! Once I get my radiation situation figured out, then that will be the next phase. After six weeks of that, then I will send in all my stuff to PA for that clinical trial. Reconstruction will happen sometime after that.
I have been feeling pretty well, but I get tired in the afternoon. My assistant is off this week and I can’t wait for her to come back. Things at work are crazy-busy! I feel like I am missing so much news this time, but I will write more some other day when my head is clearer. Writing that report for the HMO took a lot out of me I guess!
Love
Val
May 9, 2005
Last week I got Herceptin only, and this week I will be back to getting
all three chemo meds. I think my last chemo will be June 9, but
I’ll find out more this week. When I went for my consultation
with the radiation oncologist whom I want to use, she felt a soft lump
in my left underarm. So I went back to Katrina for an
ultrasound. She said it looked like a lymph node that was just
doing its job, so we will just watch it to see if anything happens with
it. After surgery, this is typical. She was surprised that
Dr. Krueger was even able to feel it. I will be getting another
PET scan in the next week or two to make sure that there are no tumors
that have formed elsewhere in my body. I had a PET scan when I
was first diagnosed, and it showed only the breast tumor, so I should
be in good shape, especially since I have had Herceptin surging through
my veins since last December.
I was about to tell you about all the fun things I did this weekend while I was off the more wicked chemo drugs, but those things don’t matter too much at this moment. Today I found out that my high school/college boyfriend/former fiancé was killed in a motorcycle accident yesterday – the morning of Mother’s Day. An elderly woman pulled out in front of him, hit him, and he was killed instantly (he was wearing a helmet). I haven’t seen much of him over the last couple years, but this guy was my first steady boyfriend – I was with him about three years and was a close friend of his for a couple years before that. I almost married him. It was a rough day for me, and I can’t even imagine what it’s been like the past two days for his mom, his sister, his girlfriend, and for his dad. I talked to his mom and his sister today; the funeral will be Thursday. So I will be going to the funeral home right after chemo, at least for a little while. I told his sister Tammy that I would visit her on Friday sometime when I will hopefully have more energy. I can’t believe with all the crazy stuff we did when we were young that he would end up dying at the hands of an 82-year-old woman on her way to church. Life is really bizarre sometimes.
I have been working diligently on a report request to convince my health plan to allow me to use a radiation oncologist outside of the plan. I have been busy collecting and reading oncology journal articles that will support the reasons for my request. I have written up a bunch of other stuff that will also go into the report. My friend Elizabeth Merizon is taking care of making sets of color copies of the articles I have highlighted. All of it will be put together with the formal request details, the data, selected chart notes, etc. in beautifully spiral-bound books. I feel like I am writing a Masters thesis or something – it looks like it will be over 50 pages long, but hopefully it will do the trick. I plan to distribute it to about a dozen people – just to make sure
I have covered all the
bases :-)
John's big project right now is the house next door (as an investment, not to live in!!). We bought it a week ago from the estate of the woman who lived there. It is a pretty cool house -- just needs some updating. We will do the updates and sell it in a couple months. It could be worse -- it could be located across town. At least I can find John when I need him!
My sister Polly just starting working at the Bergstrom Lexus dealership as assistant to the GM. I am thrilled for her…so much so that I “had to” do my part to support her new employer. I traded in my gas-hog Durango for a used RX300 today. I grew up driving Toyotas and Hondas – and I am very happy with this cute little car (and I need to thank John Hogerty for whatever help he gave me in getting hooked up with the car I wanted). And yes, I still have the Miata – that’s for summer only.
If they are as nice to their fellow employees at Bergstrom Lexus as they are to their customers, my sister is going to love working there! Polly is also the sister who made identical beaded breast cancer bracelets for me and for each of my sisters.
That’s it for now. I am way behind on wig pictures, so I will try to get those on the site soon. Lately when I wear the black wig some people have no idea who I am!!!
I was about to tell you about all the fun things I did this weekend while I was off the more wicked chemo drugs, but those things don’t matter too much at this moment. Today I found out that my high school/college boyfriend/former fiancé was killed in a motorcycle accident yesterday – the morning of Mother’s Day. An elderly woman pulled out in front of him, hit him, and he was killed instantly (he was wearing a helmet). I haven’t seen much of him over the last couple years, but this guy was my first steady boyfriend – I was with him about three years and was a close friend of his for a couple years before that. I almost married him. It was a rough day for me, and I can’t even imagine what it’s been like the past two days for his mom, his sister, his girlfriend, and for his dad. I talked to his mom and his sister today; the funeral will be Thursday. So I will be going to the funeral home right after chemo, at least for a little while. I told his sister Tammy that I would visit her on Friday sometime when I will hopefully have more energy. I can’t believe with all the crazy stuff we did when we were young that he would end up dying at the hands of an 82-year-old woman on her way to church. Life is really bizarre sometimes.
I have been working diligently on a report request to convince my health plan to allow me to use a radiation oncologist outside of the plan. I have been busy collecting and reading oncology journal articles that will support the reasons for my request. I have written up a bunch of other stuff that will also go into the report. My friend Elizabeth Merizon is taking care of making sets of color copies of the articles I have highlighted. All of it will be put together with the formal request details, the data, selected chart notes, etc. in beautifully spiral-bound books. I feel like I am writing a Masters thesis or something – it looks like it will be over 50 pages long, but hopefully it will do the trick. I plan to distribute it to about a dozen people – just to make sure
I have covered all the
bases :-)
John's big project right now is the house next door (as an investment, not to live in!!). We bought it a week ago from the estate of the woman who lived there. It is a pretty cool house -- just needs some updating. We will do the updates and sell it in a couple months. It could be worse -- it could be located across town. At least I can find John when I need him!
My sister Polly just starting working at the Bergstrom Lexus dealership as assistant to the GM. I am thrilled for her…so much so that I “had to” do my part to support her new employer. I traded in my gas-hog Durango for a used RX300 today. I grew up driving Toyotas and Hondas – and I am very happy with this cute little car (and I need to thank John Hogerty for whatever help he gave me in getting hooked up with the car I wanted). And yes, I still have the Miata – that’s for summer only.
If they are as nice to their fellow employees at Bergstrom Lexus as they are to their customers, my sister is going to love working there! Polly is also the sister who made identical beaded breast cancer bracelets for me and for each of my sisters.
That’s it for now. I am way behind on wig pictures, so I will try to get those on the site soon. Lately when I wear the black wig some people have no idea who I am!!!
April 23, 2005
The week of getting Herceptin only was a nice break. It felt so
good to get dressed up and attend the Komen dinner/dance on the 16 th –
my friends Amy Myers, Haley Evans and Joy Hodges did such a great job
with the event. I had a blast and I had really cute shoes – what
more could a girl ask for??? They raised over $2,500 and have
gotten the gratitude of the Komen Foundation. Amy said that the
Milwaukee Affiliate may be interested in adding the Fox Cities to its
market territory.
Lately I have been wearing my black wig and some people have a hard time recognizing me. I love changing my look all the time! I am sure that I will be bored once I have only my normal blonde hair color. Perhaps I will start changing my hair color every year. Or maybe I will keep a couple of the wigs and wear them when I am bored. I still haven’t lost my hair for the second time. And I keep forgetting to ask my oncologist about it. So maybe I won’t lose it…who knows….
This weekend I am fairly tired, but since chemo is cumulative, I can’t say I am surprised. It’s a great excuse to lay around and do nothing all day. I will get full chemo again next week and then I will get Herceptin only the week after that. I will be done with chemo by early June, then I will get a short break before the radiation starts. I emailed the vaccine nurse in Pennsylvania to find out how far along they are in filling that vaccine trial that I want to join. I think I said in a previous update that I need to be done with all my treatments before I can apply to the trial.
I have a consult with a radiation oncologist Monday. She is not in my health plan, but I am exploring some options right now, because I want to be prepared with the best course of action when the time comes to start the radiation.
I’m still somewhat nauseous, but I am dealing with it. DQ strawberry shakes usually do the trick for me. So the other day I was in Appleton and needed a shake pretty badly. Both DQ stores were closed to observe a funeral, and I was there 15 minutes before they were due to reopen. But I was desperate. So I waved at the guy behind the drive-up window and begged. I had to offer him five bucks for a small shake since the register wasn’t ready to go. But I got my shake.
In past updates I have expressed my gratitude for all your thoughts and prayers. And now I am fortunate enough to have entire church groups supporting my recovery! My friend Sally Tolly dropped off a beautiful prayer shawl from the First Presbyterian Church in Neenah, and the Contemporary Choir with which I perform at St. Margaret Mary Church gave me a bag of goodies this week including a card about having the Holy Sacrifice of the Mass offered for my intentions. I have to admit that throughout my life, other than playing my “gig with the church band,” I haven’t been a dedicated or involved church person. So these gestures have really impressed upon me how really truly good people are to each other (despite the type of news that the newspapers usually like to report). Early in my diagnosis, a woman my husband knows just because she works at a coffee shop he frequents, gave him a piece of cloth that her church group prayed over. She told him to give it to me to help my healing. How cool is that? She didn’t even know me!
With the cold weather this weekend, I was talking to John today about how weird it is that I didn’t ski even once this year. He said that this is a “do-over” year. He’s right. I will simply have to do a lot of catching up next year. So I guess that means that because I had to miss four parties around the holidays last year, that there had better be EIGHT parties during the 2005 holiday season for me to attend :- )
This is a quote that Mary Buchta sent me in part of an email recently. I liked it. So I am passing it on…although for me it might be a Cosmo rather than a glass of champagne, but the concept still works. I don't include this quote to be morbid, but to assure you all that I intend to do a lot of catching up next year :- )
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body thoroughly used up, totally worn out and screaming 'WOO HOO! What a Ride!' "
Lately I have been wearing my black wig and some people have a hard time recognizing me. I love changing my look all the time! I am sure that I will be bored once I have only my normal blonde hair color. Perhaps I will start changing my hair color every year. Or maybe I will keep a couple of the wigs and wear them when I am bored. I still haven’t lost my hair for the second time. And I keep forgetting to ask my oncologist about it. So maybe I won’t lose it…who knows….
This weekend I am fairly tired, but since chemo is cumulative, I can’t say I am surprised. It’s a great excuse to lay around and do nothing all day. I will get full chemo again next week and then I will get Herceptin only the week after that. I will be done with chemo by early June, then I will get a short break before the radiation starts. I emailed the vaccine nurse in Pennsylvania to find out how far along they are in filling that vaccine trial that I want to join. I think I said in a previous update that I need to be done with all my treatments before I can apply to the trial.
I have a consult with a radiation oncologist Monday. She is not in my health plan, but I am exploring some options right now, because I want to be prepared with the best course of action when the time comes to start the radiation.
I’m still somewhat nauseous, but I am dealing with it. DQ strawberry shakes usually do the trick for me. So the other day I was in Appleton and needed a shake pretty badly. Both DQ stores were closed to observe a funeral, and I was there 15 minutes before they were due to reopen. But I was desperate. So I waved at the guy behind the drive-up window and begged. I had to offer him five bucks for a small shake since the register wasn’t ready to go. But I got my shake.
In past updates I have expressed my gratitude for all your thoughts and prayers. And now I am fortunate enough to have entire church groups supporting my recovery! My friend Sally Tolly dropped off a beautiful prayer shawl from the First Presbyterian Church in Neenah, and the Contemporary Choir with which I perform at St. Margaret Mary Church gave me a bag of goodies this week including a card about having the Holy Sacrifice of the Mass offered for my intentions. I have to admit that throughout my life, other than playing my “gig with the church band,” I haven’t been a dedicated or involved church person. So these gestures have really impressed upon me how really truly good people are to each other (despite the type of news that the newspapers usually like to report). Early in my diagnosis, a woman my husband knows just because she works at a coffee shop he frequents, gave him a piece of cloth that her church group prayed over. She told him to give it to me to help my healing. How cool is that? She didn’t even know me!
With the cold weather this weekend, I was talking to John today about how weird it is that I didn’t ski even once this year. He said that this is a “do-over” year. He’s right. I will simply have to do a lot of catching up next year. So I guess that means that because I had to miss four parties around the holidays last year, that there had better be EIGHT parties during the 2005 holiday season for me to attend :- )
This is a quote that Mary Buchta sent me in part of an email recently. I liked it. So I am passing it on…although for me it might be a Cosmo rather than a glass of champagne, but the concept still works. I don't include this quote to be morbid, but to assure you all that I intend to do a lot of catching up next year :- )
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body thoroughly used up, totally worn out and screaming 'WOO HOO! What a Ride!' "
April 8, 2005
I think the nausea is part of the deal for me now. Today I
definitely felt it...not enough to puke or anything, but certainly
enough to require me to lay low. I did teach spin this morning;
the nauseous feeling didn't start until just before noon. I have
meds I can take to prevent nausea, but they make me drowsy, and if I
sleep during the day I won't be able to sleep at night :-)
So today I laid around and starting watching all the episodes of "Friends" on DVD (thanks to my co-worker Ann who lent 8 seasons to me). And on such a beautiful day...what a shame that I was inside. Tomorrow I have promised myself that no matter how I feel I am going to get into that little car of mine, put the top down and drive around in the nice weather :-)
And of course I haven't been out on my road bike yet this season. John has gone out a couple times, and I am going to start doing some short distances pretty soon.
And here is a hair update: I had a one month break from chemo, and it takes three weeks for you to lose your hair once you start chemo, so I have a curly 1/2" of hair right now. But there is more grey than before--yikes! I guess with my blonde hair that is so many different shades, the grey was blending in before. I think in the next couple days I will start to lose the hair again, not sure. The good news is that I have seven wigs and I just ordered another one--I got gutsy and ordered and almost-black one in a chin-length bob. I'm anxious for another change! So maybe it's time for another wig picture...
Next Thursday I will ask for only Herceptin (skipping the Taxol and Carboplatin chemo drugs) since I have to attend a dinner dance & fund-raiser for the Komen Foundation. So I won't be nauseous next week :-)
So today I laid around and starting watching all the episodes of "Friends" on DVD (thanks to my co-worker Ann who lent 8 seasons to me). And on such a beautiful day...what a shame that I was inside. Tomorrow I have promised myself that no matter how I feel I am going to get into that little car of mine, put the top down and drive around in the nice weather :-)
And of course I haven't been out on my road bike yet this season. John has gone out a couple times, and I am going to start doing some short distances pretty soon.
And here is a hair update: I had a one month break from chemo, and it takes three weeks for you to lose your hair once you start chemo, so I have a curly 1/2" of hair right now. But there is more grey than before--yikes! I guess with my blonde hair that is so many different shades, the grey was blending in before. I think in the next couple days I will start to lose the hair again, not sure. The good news is that I have seven wigs and I just ordered another one--I got gutsy and ordered and almost-black one in a chin-length bob. I'm anxious for another change! So maybe it's time for another wig picture...
Next Thursday I will ask for only Herceptin (skipping the Taxol and Carboplatin chemo drugs) since I have to attend a dinner dance & fund-raiser for the Komen Foundation. So I won't be nauseous next week :-)
March 19, 2005
I have been cleared to return to work on Monday, and I am anxious to do
that. Not sure how many hours I will last, but I really need to
get out of the house. It’s been hard to be home without seeing
people, including my friends and the people I work with. I have
discovered that it’s difficult for me to exist without people
around! Of course that really shouldn’t be a surprise to me…
I had no real pain from my surgery, only soreness, most of which has disappeared. I started weekly chemo on Thursday, and yesterday that hit me pretty hard, but today I feel pretty good. Now I can drive and do almost everything else EXCEPT teach my spin class! For me, going without exercise has been like being without air! I can go back to biking on March 28, but we’ll be on spring break that week, so it will actually be another week after that until I can go back to class — yikes! I am getting very antsy!!!
I am getting behind on my thank you notes, but I plan to write them today. Having people bring dinner on my bad days has been a HUGE help for our family. And all the cards and little gifts have been very important to me and appreciated more than you know. But mostly I just miss seeing everyone out and about. I am looking forward to getting the chance some time soon to go to some sort of big party – probably the first one will be the Century Club dinner/dance next month.
And since I have purchased so many shoes lately, I will have just the right pair to wear that night :-)
I had no real pain from my surgery, only soreness, most of which has disappeared. I started weekly chemo on Thursday, and yesterday that hit me pretty hard, but today I feel pretty good. Now I can drive and do almost everything else EXCEPT teach my spin class! For me, going without exercise has been like being without air! I can go back to biking on March 28, but we’ll be on spring break that week, so it will actually be another week after that until I can go back to class — yikes! I am getting very antsy!!!
I am getting behind on my thank you notes, but I plan to write them today. Having people bring dinner on my bad days has been a HUGE help for our family. And all the cards and little gifts have been very important to me and appreciated more than you know. But mostly I just miss seeing everyone out and about. I am looking forward to getting the chance some time soon to go to some sort of big party – probably the first one will be the Century Club dinner/dance next month.
And since I have purchased so many shoes lately, I will have just the right pair to wear that night :-)
April 3, 2005
I have had three weeks of chemo since surgery, and I have to admit that
the chemo isn’t quite as easy post-surgery as it was pre-surgery.
But I am still doing well—just a bit more tired. I felt a little
nausea yesterday but that could have been anything…not necessarily
related to the chemo…we’ll see. My blood counts were pretty low
this week, so I imagine that I will not get full chemo this week.
My other post-surgery issues are going great. I have full range of motion in my left arm (at least in my opinion I do—we’ll see what Ray says this week). And my incision scar is very thin and looks great—Ray did a fabulous job! I bought a bunch of cami’s from Express and Gap and that’s what I am wearing instead of whatever special undergarments that go along with a mastectomy.
I did have some pain around the incision two weeks ago and I was worried about it so I went in to be checked— I wanted to make sure that I wasn’t tearing something internally. It was like I had two bumps near the incision that felt like big bruises. Imagine my reaction when Ray told me that those bumps were my ribs! They were a bit inflamed probably because of the internal sutures. And since I have never before had so little tissue covering my ribs, this concept never dawned on me. I laughed so hard, and of course Ray did a stellar job of remaining a serious physician. I am sure that he and Genie had a good laugh—but I did call her as I was leaving the clinic so she would hear it from me rather than from Ray :- )
Tomorrow I start working full time again, and I started teaching spin again last week Friday. So far so good…
My other post-surgery issues are going great. I have full range of motion in my left arm (at least in my opinion I do—we’ll see what Ray says this week). And my incision scar is very thin and looks great—Ray did a fabulous job! I bought a bunch of cami’s from Express and Gap and that’s what I am wearing instead of whatever special undergarments that go along with a mastectomy.
I did have some pain around the incision two weeks ago and I was worried about it so I went in to be checked— I wanted to make sure that I wasn’t tearing something internally. It was like I had two bumps near the incision that felt like big bruises. Imagine my reaction when Ray told me that those bumps were my ribs! They were a bit inflamed probably because of the internal sutures. And since I have never before had so little tissue covering my ribs, this concept never dawned on me. I laughed so hard, and of course Ray did a stellar job of remaining a serious physician. I am sure that he and Genie had a good laugh—but I did call her as I was leaving the clinic so she would hear it from me rather than from Ray :- )
Tomorrow I start working full time again, and I started teaching spin again last week Friday. So far so good…
March 9, 2005
1. I got the drains out today which makes it a pretty great day.
I can't drive, go in the hot tub, or do a bunch of other stuff until
sometime next week, but I can live with that if I don't have to walk
around looking like a Borg drone connected to the Collective (if you
don't know what I mean, then you don't watch enough Star Trek -- or I
watch too much).
2. We got the pathology report today from my surgery. Man, I am so lucky I had that chemo prior to surgery...that tumor was a lot bigger than we thought, but it still wasn't into the chest wall, which is good news. The mass they removed had clean margins, which is also good news (that means that there were no cancer cells at the edges of what they removed--if there had been, it would have meant more surgery). And of the node masses they removed, 5 out of 8 were positive.
3. Before y'all freak out about positive nodes, I will tell you that (a) many of the cancer cells in the nodes were already dead due to the neo-adjuvant (pre-surgery) chemo; and (b) the Herceptin I got prior to surgery was busy killing all those cells in the main tumor. Now that the tumor is gone, my three more months of chemo will be free to work on any other stray cancer cells that may be floating around out there; (c) my initial PET scan showed no tumor activity anywhere else in my body; and (d) as soon as my radiation is over, I will apply to get into the Herceptin vaccine clinical trial in Pennsylvania. So I will be covered--I am not worried, so no one else should be.
4. And forget what I said about the shoe thing (see last entry). As soon as I wrote that, I remembered how great it is to own more shoes. So I bought some online yesterday and I convinced Andrea B. to go shoe shopping with me this week.
That's it for today -- now I just need to rest a LITTLE bit more, take it easy on the shopping, and get ready for more chemo next week!
2. We got the pathology report today from my surgery. Man, I am so lucky I had that chemo prior to surgery...that tumor was a lot bigger than we thought, but it still wasn't into the chest wall, which is good news. The mass they removed had clean margins, which is also good news (that means that there were no cancer cells at the edges of what they removed--if there had been, it would have meant more surgery). And of the node masses they removed, 5 out of 8 were positive.
3. Before y'all freak out about positive nodes, I will tell you that (a) many of the cancer cells in the nodes were already dead due to the neo-adjuvant (pre-surgery) chemo; and (b) the Herceptin I got prior to surgery was busy killing all those cells in the main tumor. Now that the tumor is gone, my three more months of chemo will be free to work on any other stray cancer cells that may be floating around out there; (c) my initial PET scan showed no tumor activity anywhere else in my body; and (d) as soon as my radiation is over, I will apply to get into the Herceptin vaccine clinical trial in Pennsylvania. So I will be covered--I am not worried, so no one else should be.
4. And forget what I said about the shoe thing (see last entry). As soon as I wrote that, I remembered how great it is to own more shoes. So I bought some online yesterday and I convinced Andrea B. to go shoe shopping with me this week.
That's it for today -- now I just need to rest a LITTLE bit more, take it easy on the shopping, and get ready for more chemo next week!
March 6, 2005
============
Surgery went well. I left the hospital mid-afternoon on Saturday. The toughest part was the backache I got from sleeping on the too-soft mattress while at the hospital. If you can call it sleeping – they came in every couple hours to either check vitals or administer more IV meds. So it’s good to be home.
Ray did a great job with the surgery. I am still laughing to myself about our pre-op chat. Rather than talk only about the surgery like most of the other patients in pre-op, we talked mostly about what music we wanted to have playing on his iPod during the surgery. It was really important to have our priorities straight :- )
The kids have spent the weekend split between the Davis and the Griffin households, which has given me the chance to rest and gave them the chance to have fun with friends (and it gave John the chance to play nurse). I am still puzzled by the voo-doo thing was that Grace and Jane were working on when I talked to Jane on Saturday afternoon. Maybe Kathy will have to tell me about that again when I have fewer meds flowing through my system….
There are drains in two spots which have been the most uncomfortable part of the recovery. One is at my chest and one near my armpit. Ray took out three lymph nodes, two of which had evidence of cancer cells. The drains will hopefully come out in the next couple days. When they are removed, I think I will be much more comfortable.
Thanks for the cards, phone calls, notes, etc!!
P.S. Click on the "Century Club" link on the left for info about a fundraiser for the Komen Foundation!
Surgery went well. I left the hospital mid-afternoon on Saturday. The toughest part was the backache I got from sleeping on the too-soft mattress while at the hospital. If you can call it sleeping – they came in every couple hours to either check vitals or administer more IV meds. So it’s good to be home.
Ray did a great job with the surgery. I am still laughing to myself about our pre-op chat. Rather than talk only about the surgery like most of the other patients in pre-op, we talked mostly about what music we wanted to have playing on his iPod during the surgery. It was really important to have our priorities straight :- )
The kids have spent the weekend split between the Davis and the Griffin households, which has given me the chance to rest and gave them the chance to have fun with friends (and it gave John the chance to play nurse). I am still puzzled by the voo-doo thing was that Grace and Jane were working on when I talked to Jane on Saturday afternoon. Maybe Kathy will have to tell me about that again when I have fewer meds flowing through my system….
There are drains in two spots which have been the most uncomfortable part of the recovery. One is at my chest and one near my armpit. Ray took out three lymph nodes, two of which had evidence of cancer cells. The drains will hopefully come out in the next couple days. When they are removed, I think I will be much more comfortable.
Thanks for the cards, phone calls, notes, etc!!
P.S. Click on the "Century Club" link on the left for info about a fundraiser for the Komen Foundation!
March 8, 2005
The last several days I have been sitting around being bored. I
am reading at least a book or two every day. Which is great
except that it's really easy to get the characters mixed up in your
mind and the storylines confused. And when you throw in a movie
or two, that makes it even worse!
John is making sure the household keeps going while at the same time tiling the master bathroom. The kids are still doing their thing and both of them have been great.
Tomorrow morning I go in to see Ray -- and hopefully get the tubes taken out. Then I will be a whole lot more comfortable.
For those of you who are asking me for "the real story" about how I am REALLY doing...this is the real story! I am in almost no pain at all, except if I move wrong and upset those pesky tube thingys. Tomorrow will be a whole different story when they are gone!!!
Oh yeah...one more thing...I am already bored with the five wigs I have, so I ordered two more. One cannot have too many fashion statements when it comes to hair...I guess that's my new thing. It used to be shoes, but there will be time to go back to being shoe-obsessed!
John is making sure the household keeps going while at the same time tiling the master bathroom. The kids are still doing their thing and both of them have been great.
Tomorrow morning I go in to see Ray -- and hopefully get the tubes taken out. Then I will be a whole lot more comfortable.
For those of you who are asking me for "the real story" about how I am REALLY doing...this is the real story! I am in almost no pain at all, except if I move wrong and upset those pesky tube thingys. Tomorrow will be a whole different story when they are gone!!!
Oh yeah...one more thing...I am already bored with the five wigs I have, so I ordered two more. One cannot have too many fashion statements when it comes to hair...I guess that's my new thing. It used to be shoes, but there will be time to go back to being shoe-obsessed!
February 24, 2005
Today I had my last chemo until March 17! Since surgery is a week
from tomorrow, I won’t have chemo next week, and I won’t have it for a
couple weeks after surgery. Then about three months of the same
chemo and then six weeks of radiation. In my opinion, my blood
counts seemed low today, but the docs don’t seem concerned, and they’re
the experts. They will take more blood from me next week just to
be sure, but surgery is still a go. I think my arm has more
needle tracks right now than a heroin addict’s.
I received an email from a friend today who has a friend who is newly diagnosed with breast cancer. She is going with her friend to meet with her surgeon and she wanted to know what questions they should ask at the appointment. Isn’t that funny? I haven’t been a “cancer chick” very long, and I am already getting asked for advice. How cool is that? Seems that I am already “qualified” to help someone else! I suppose it’s just one more huge benefit to this disease – the ability to support other women. Kind of a weird club to join, but I think it will be a rewarding one.
I received an email from a friend today who has a friend who is newly diagnosed with breast cancer. She is going with her friend to meet with her surgeon and she wanted to know what questions they should ask at the appointment. Isn’t that funny? I haven’t been a “cancer chick” very long, and I am already getting asked for advice. How cool is that? Seems that I am already “qualified” to help someone else! I suppose it’s just one more huge benefit to this disease – the ability to support other women. Kind of a weird club to join, but I think it will be a rewarding one.
February 4, 2005
I just realized that it has been awhile since I sent out an email to
you guys. I am still feeling surprisingly well, considering I
still have the chemo coursing through my veins every week.
I am expecting that my surgery will be March 4, but I won't know
that for sure until everyone reviews my new MRIs. Ray has to give
the go-ahead as well. After surgery, I will keep going with chemo
for another three months. I have still been teaching biking
classes at the Y, but I will be taking a break from that for a couple
weeks after surgery.
The surgery will be a mastectomy, because let's face it...with my chest size, if I have a lump removed, there really won't be much left! Because I will have radiation after chemo is over, I can't do reconstruction until after the radiation. Radiation changes the properties of the skin, and can cause problems with the implants.
I could enlighten you with pages and pages of information about breast surgery issues, but that would be more than you really wanted to know. Lately I feel more like a medical researcher than a marketer/advertiser/graphics person!! I have spend a ton of time
reading up on the issues relating to surgery and reconstruction. The information has been mind-boggling. I read a book last week called "Why I Wore Lipstick to my Mastectomy," which is about a 27-year-old woman who had a mastectomy. She was a producer for 20/20 at the time. I have been reading an average of three books a week, thankfully not all of them cancer-related. Anyway, I digress...this woman had a tattoo put on her reconstructed breast! While Ray has told me that as my surgeon, he strongly insists that a tattoo is a bad idea, I still
have that idea filed in the back of my mind for next year!
After all this reading, a curious thing about people and their reactions to becoming cancer patients has me puzzled. Barbara Delinsky wrote a book that contains stories submitted by women who have had cancer or cared for a woman who had breast cancer. A recurrent theme is that, for many women, cancer is a huge wake-up call -- a life-changing event -- because they begin to live their lives differently. I recently asked a couple friends about what they thought of this. I was trying to figure out why I still feel like I am living each day the way I did before. I was driving down the road the other day and was laughing out loud about something I was thinking about, and then here's the thought that went through my head next:
"This is so funny. I have cancer, and I am being just as goofy as I always have been. Is this the way I'm supposed to behaving?" Is there a "right" way to act when you have cancer? One of my friends told me this is happening to me because I have ALWAYS lived to have
fun, be silly, and to get the most out of each day, so I haven't needed the cancer to change that. Maybe that makes sense. I don't think anyone knows what kind of person they will be when they become a "cancer patient." I certainly didn't think I would be this laid back about something like this, but.....
1. I sure am glad that I am "this type" of cancer patient, and
2. I hope none of you ever has to find out what "type" you are :-)
I suspect that over the weeks leading up to surgery that I will have only Herceptin so that my white blood cells will be numerous enough to fight potential infections (my other two chemo meds are the ones that reduce my white blood cells). So Genie will probably not be scheduling people to bring dinner during that time. When I have surgery, I imagine she will start up a heavier schedule for a couple weeks, then back to the way it is now when chemo starts up again. A gigantic thank you to all of you who have the time in your busy schedules to help with these dinners. You can't imagine the huge difference it make to us.
If there isn't any new news, I will send an update right before surgery. If you don't hear from me, you can assume all is well!
The surgery will be a mastectomy, because let's face it...with my chest size, if I have a lump removed, there really won't be much left! Because I will have radiation after chemo is over, I can't do reconstruction until after the radiation. Radiation changes the properties of the skin, and can cause problems with the implants.
I could enlighten you with pages and pages of information about breast surgery issues, but that would be more than you really wanted to know. Lately I feel more like a medical researcher than a marketer/advertiser/graphics person!! I have spend a ton of time
reading up on the issues relating to surgery and reconstruction. The information has been mind-boggling. I read a book last week called "Why I Wore Lipstick to my Mastectomy," which is about a 27-year-old woman who had a mastectomy. She was a producer for 20/20 at the time. I have been reading an average of three books a week, thankfully not all of them cancer-related. Anyway, I digress...this woman had a tattoo put on her reconstructed breast! While Ray has told me that as my surgeon, he strongly insists that a tattoo is a bad idea, I still
have that idea filed in the back of my mind for next year!
After all this reading, a curious thing about people and their reactions to becoming cancer patients has me puzzled. Barbara Delinsky wrote a book that contains stories submitted by women who have had cancer or cared for a woman who had breast cancer. A recurrent theme is that, for many women, cancer is a huge wake-up call -- a life-changing event -- because they begin to live their lives differently. I recently asked a couple friends about what they thought of this. I was trying to figure out why I still feel like I am living each day the way I did before. I was driving down the road the other day and was laughing out loud about something I was thinking about, and then here's the thought that went through my head next:
"This is so funny. I have cancer, and I am being just as goofy as I always have been. Is this the way I'm supposed to behaving?" Is there a "right" way to act when you have cancer? One of my friends told me this is happening to me because I have ALWAYS lived to have
fun, be silly, and to get the most out of each day, so I haven't needed the cancer to change that. Maybe that makes sense. I don't think anyone knows what kind of person they will be when they become a "cancer patient." I certainly didn't think I would be this laid back about something like this, but.....
1. I sure am glad that I am "this type" of cancer patient, and
2. I hope none of you ever has to find out what "type" you are :-)
I suspect that over the weeks leading up to surgery that I will have only Herceptin so that my white blood cells will be numerous enough to fight potential infections (my other two chemo meds are the ones that reduce my white blood cells). So Genie will probably not be scheduling people to bring dinner during that time. When I have surgery, I imagine she will start up a heavier schedule for a couple weeks, then back to the way it is now when chemo starts up again. A gigantic thank you to all of you who have the time in your busy schedules to help with these dinners. You can't imagine the huge difference it make to us.
If there isn't any new news, I will send an update right before surgery. If you don't hear from me, you can assume all is well!
February 17, 2005
1. Surgery is still scheduled for March 4 at St. E's. Ray Georgen
will be doing the surgery -- mastectomy on the left side only.
This will be the first time Ray has operated at St. E's -- he is
getting temporary privileges. My blood counts were still low
today, so hopefully they will rebound in time for the planned surgery
date. I will be overnight at St. E's one night unless I feel well
enough to go home that evening. And many of you already know this
about me – I don't really like getting flowers, so you're off the hook
for that. If you'd like, take the money you would have spent and send
it to the Komen Foundation :-)
2. I am getting Herceptin through next Thursday. No chemo the day before surgery. I am still feeling very positive and fairly strong. Things at home seem a bit more out of control than usual, but we are hanging in there. The only time I get emotional is about things or situations other than my cancer. For example, the sister of one of my
high school friends died this week of lung cancer after being diagnosed only last November. I hadn't seen her in years, but it has had a big effect on me today.
3. I talked to the vaccine nurse at Windber Medical Center in Pennsylvania where they are recruiting for a clinical trial involving a Herceptin vaccine. She sent me a whole packet of info about the trial. I am hoping to get into this trial in order to prevent recurrence of the cancer in other areas of my body. I am eligible to apply after all my treatments are complete, which should be late summer. It would mean several trips to PA, but it would be a fun
adventure and well worth it to me.
There probably won't be new news until after my surgery. I'll let you know if the date changes. Thanks again for the thoughts and prayers!!
2. I am getting Herceptin through next Thursday. No chemo the day before surgery. I am still feeling very positive and fairly strong. Things at home seem a bit more out of control than usual, but we are hanging in there. The only time I get emotional is about things or situations other than my cancer. For example, the sister of one of my
high school friends died this week of lung cancer after being diagnosed only last November. I hadn't seen her in years, but it has had a big effect on me today.
3. I talked to the vaccine nurse at Windber Medical Center in Pennsylvania where they are recruiting for a clinical trial involving a Herceptin vaccine. She sent me a whole packet of info about the trial. I am hoping to get into this trial in order to prevent recurrence of the cancer in other areas of my body. I am eligible to apply after all my treatments are complete, which should be late summer. It would mean several trips to PA, but it would be a fun
adventure and well worth it to me.
There probably won't be new news until after my surgery. I'll let you know if the date changes. Thanks again for the thoughts and prayers!!
Janaury 21, 2005
Today I got all three chemo drugs. The tumor continues to shrink;
today I talked with my doctor about my surgery options. I will
know more as we get closer to the expected surgery date, probably
around the end of February, but that could change. Some of my
surgery decisions will depend on what is found during the surgery.
I did quite a bit of studying this weekend about my Her2 cancer cell and found out that the way I am getting Herceptin is very cutting edge. In other places, it is only being used in cases where the cancer has metastasized (spread to other parts of the body), which isn't the case with my cancer. We are very fortunate to have physicians in the Fox Valley who are way ahead of the rest of the country in many different aspects of health care delivery. I found a website all about the Her2-neu cancer cell, and none of the stories I read involved women who had received Herceptin before surgery like I am. Some are having trouble convincing their doctors to give them Herceptin. I also found out that there is a clinical trial going on right now for a Herceptin vaccine that looks promising. It is intended for after treatment to prevent recurrence. I asked my doctor today about getting the word out to other oncologists about this because its not fair that other women aren't getting this treatment when it works so well.
My body is still am accepting the chemo drugs fairly well. I get pretty tired for a couple days after chemo, but I am not experiencing nausea. I am still teaching at least two Cycling classes a week, which really feels great. Even on the days I feel tired, I need to get our of the house and do something at least once a day. Otherwise I would go berserk!!
As promised here is a wig picture. My human resources colleagues at work gave me separate nametags for each of the wigs. I hope there is no danger of developing a split personality when this is all over. There are two more wigs, so perhaps another time I will have another picture to share :-).
I did quite a bit of studying this weekend about my Her2 cancer cell and found out that the way I am getting Herceptin is very cutting edge. In other places, it is only being used in cases where the cancer has metastasized (spread to other parts of the body), which isn't the case with my cancer. We are very fortunate to have physicians in the Fox Valley who are way ahead of the rest of the country in many different aspects of health care delivery. I found a website all about the Her2-neu cancer cell, and none of the stories I read involved women who had received Herceptin before surgery like I am. Some are having trouble convincing their doctors to give them Herceptin. I also found out that there is a clinical trial going on right now for a Herceptin vaccine that looks promising. It is intended for after treatment to prevent recurrence. I asked my doctor today about getting the word out to other oncologists about this because its not fair that other women aren't getting this treatment when it works so well.
My body is still am accepting the chemo drugs fairly well. I get pretty tired for a couple days after chemo, but I am not experiencing nausea. I am still teaching at least two Cycling classes a week, which really feels great. Even on the days I feel tired, I need to get our of the house and do something at least once a day. Otherwise I would go berserk!!
As promised here is a wig picture. My human resources colleagues at work gave me separate nametags for each of the wigs. I hope there is no danger of developing a split personality when this is all over. There are two more wigs, so perhaps another time I will have another picture to share :-).
January 6, 2005
As I write these health updates I wonder if they seem anything like a
soap opera. This is certainly a continuing story, yet it doesn't
have nearly the number of neurotic people you find in an average
daytime serial (thankfully). Those I hear from seem to like
getting the news about my progress via email. And since you
otherwise would need to get the news from the "grapevine," I'll
continue as long as it seems an effective way to relate the news.
(And no one so far has said "please stop sending me these long emails"
so hopefully that's a good sign!)
Today I had only the Herceptin; the other two chemo drugs will be added back to the mix next week. This is for two reasons: first, my blood counts aren't down this week, but they are still considered low, so we are giving them a break by not having the Taxol and the Carboplatin. The second reason is that the tumor has gotten so SMALL!!! My doc described the tumor as being about 8x8x5 cm in the beginning of December, or about 320 cubic centimeters. By 12/23, he was estimating it to be 6x5x4, or 120 cubic cm. Today he said, and I quote, it's "barely detectable." I asked if he thought it was 10 or 20 cubic centimeters and he maybe. So this is great news :-)
There is something important you all need to know about my type of cancer. Had I been diagnosed five years ago, I would not be doing so well. Herceptin has only been in general use for my type of cancer for around three years. Without Herceptin, my odds of successful treatment would be dramatically worse. The reason I tell you this (besides relating to you how lucky I am), is to convey to you the importance of research to this disease. Any time you have the opportunity to support cancer research, please do so. It is astonishing how far we have come, even in the past two years. They are making new discoveries every day. My hope is that by the time our daughters are old enough to worry about breast cancer that it will be a piece of cake preventing it and treating it. So those dollars you send to support the Komen Foundation or the Lance Armstrong Foundation are well worth it. (And if you are looking for a pretty good quick read, pick up Lance Armstrong's books -- the first one is entitled "It's Not About The Bike" -- he's an interesting character and his story is inspiring.)
After I hadmy head shaved, I decided to take it to the next level. It was still bugging me, so I got some Nair (the gentler kind that you can use on your face) and I used it to get rid of the tiny bit of remaining hair. When I asked the pharmacist if I could use that product on my head, judging from her reaction, I think it had been the first time she had been asked that question. So I am now down to bare nothing.
I should forewarn you that the next time you see me you may not recognize me. I have several new wigs and I think I will be ordering a couple more. I am having so much fun with them! Maybe next time I send an email I will attach some pictures. You may see me as a redhead with long hair, or with a short blonde bob, or who knows??? I also have many cool hats, thanks to Brenda, and to area volunteers who make dozens of hats and donate them to the local cancer centers for people like me to take home. I am definitely going to send these people a thank you card. I think it's amazing what these ladies are doing to help people they don't even know. I think they make quilts that we are also welcome to take.
(A funny hat story though -- I sleep with a light knit hat on (since as you can imagine, one's head gets rather cold without hair) -- one morning the alarm went off and I got really confused -- I couldn't see the clock numbers. I thought the power had gone off. But if it had, how could the alarm be sounding??? Then I realized that my hat was covering my eyes....)
I am still trying to keep up with normal activities. I missed a couple recent cycling classes, but taught yesterday, which felt GREAT! I ended up at the ER last Sunday because I was having an issue with my breathing -- not a big one, but since the literature says to watch for heart and lung problems while on chemo, I wanted to err on the side of caution. There turned out to be no problem -- they put me on antibiotics just in case I had some sort of bronchial issue.
After the holidays we went up north skiing. Well, I didn't ski of course. The kids each brought a cousin along and John took them all to the hill each day. I stayed at the hotel and read three books. And I went to the Marquette MI library and surfed the net. Boy do I sound like a geek or what :-)
I truly think other people have been the best part about having this disease. You'll think I am crazy, but I feel blessed to have breast cancer. It's been a major inconvenience, but it has shown me that I have so many friends who love me and will support me when I need it. I can't even begin to explain how wonderful that feels. I would not wish this disease on anyone, but for me it has been a positive experience because I have learned how fortunate I am to have such incredible people in my life.
Today I had only the Herceptin; the other two chemo drugs will be added back to the mix next week. This is for two reasons: first, my blood counts aren't down this week, but they are still considered low, so we are giving them a break by not having the Taxol and the Carboplatin. The second reason is that the tumor has gotten so SMALL!!! My doc described the tumor as being about 8x8x5 cm in the beginning of December, or about 320 cubic centimeters. By 12/23, he was estimating it to be 6x5x4, or 120 cubic cm. Today he said, and I quote, it's "barely detectable." I asked if he thought it was 10 or 20 cubic centimeters and he maybe. So this is great news :-)
There is something important you all need to know about my type of cancer. Had I been diagnosed five years ago, I would not be doing so well. Herceptin has only been in general use for my type of cancer for around three years. Without Herceptin, my odds of successful treatment would be dramatically worse. The reason I tell you this (besides relating to you how lucky I am), is to convey to you the importance of research to this disease. Any time you have the opportunity to support cancer research, please do so. It is astonishing how far we have come, even in the past two years. They are making new discoveries every day. My hope is that by the time our daughters are old enough to worry about breast cancer that it will be a piece of cake preventing it and treating it. So those dollars you send to support the Komen Foundation or the Lance Armstrong Foundation are well worth it. (And if you are looking for a pretty good quick read, pick up Lance Armstrong's books -- the first one is entitled "It's Not About The Bike" -- he's an interesting character and his story is inspiring.)
After I hadmy head shaved, I decided to take it to the next level. It was still bugging me, so I got some Nair (the gentler kind that you can use on your face) and I used it to get rid of the tiny bit of remaining hair. When I asked the pharmacist if I could use that product on my head, judging from her reaction, I think it had been the first time she had been asked that question. So I am now down to bare nothing.
I should forewarn you that the next time you see me you may not recognize me. I have several new wigs and I think I will be ordering a couple more. I am having so much fun with them! Maybe next time I send an email I will attach some pictures. You may see me as a redhead with long hair, or with a short blonde bob, or who knows??? I also have many cool hats, thanks to Brenda, and to area volunteers who make dozens of hats and donate them to the local cancer centers for people like me to take home. I am definitely going to send these people a thank you card. I think it's amazing what these ladies are doing to help people they don't even know. I think they make quilts that we are also welcome to take.
(A funny hat story though -- I sleep with a light knit hat on (since as you can imagine, one's head gets rather cold without hair) -- one morning the alarm went off and I got really confused -- I couldn't see the clock numbers. I thought the power had gone off. But if it had, how could the alarm be sounding??? Then I realized that my hat was covering my eyes....)
I am still trying to keep up with normal activities. I missed a couple recent cycling classes, but taught yesterday, which felt GREAT! I ended up at the ER last Sunday because I was having an issue with my breathing -- not a big one, but since the literature says to watch for heart and lung problems while on chemo, I wanted to err on the side of caution. There turned out to be no problem -- they put me on antibiotics just in case I had some sort of bronchial issue.
After the holidays we went up north skiing. Well, I didn't ski of course. The kids each brought a cousin along and John took them all to the hill each day. I stayed at the hotel and read three books. And I went to the Marquette MI library and surfed the net. Boy do I sound like a geek or what :-)
I truly think other people have been the best part about having this disease. You'll think I am crazy, but I feel blessed to have breast cancer. It's been a major inconvenience, but it has shown me that I have so many friends who love me and will support me when I need it. I can't even begin to explain how wonderful that feels. I would not wish this disease on anyone, but for me it has been a positive experience because I have learned how fortunate I am to have such incredible people in my life.
December 29, 2004
Remember when I said I bet that my hair would be gone by Monday?
Well I hurried it along a bit. I couldn't stand it anymore.
I had John butch it all off a few minutes ago. Who wants to
have all that hair falling out all over the house...or down the shower
drain??? Not me!
So here is a pic of the butch job in process and a pic of the way I look now. Feels pretty good, but I wouldn't want to walk around like this. I feel like Sigourney Weaver getting ready to battle some angry alien....
So here is a pic of the butch job in process and a pic of the way I look now. Feels pretty good, but I wouldn't want to walk around like this. I feel like Sigourney Weaver getting ready to battle some angry alien....
December 25, 2004
Things are going well. Couple quick bits of news...
1. My bet is that my hair will be completely gone by Monday. If I was really bored and wanted to move it along a bit, I would grab some duct tape and see how many pieces I could get in one try. It would make an interesting party game perhaps if everyone had their own piece of duct tape... In a sort of a weird way it feels pretty cool to pull it out. A few minutes ago I was yanking a bunch out in front of the mirror, and as I pulled out clumps, I said to myself "I can't believe this doesn't bother me more." (out loud of course--I think I am talking to myself way more than is healthy lately). It sort of surprises me that losing my hair doesn't bother me. I think it's because I am excited to wear the wigs. The sad part is that I only have one wig on hand so far (well, two if you count the Packer wig from Brenda, which is blond but isn't exactly appropriate for all social situations). The other three are on their way and I have been trying to sweet-talk the crazy wig people in California into rushing the order....we'll soon see whether my charm worked or not.
3. The tumor is 1/4 of its original size--how cool is that??!!?! And that's after only three treatments. I asked my oncologist more about Herceptin, which is one of the chemo drugs I get -- it's the one that is specific to my type of cancer cell, and is the main one doing such an amazing job on this tumor. Herceptin has only been in wide use for the last three or so years. Just goes to show what an impact that research has had on this disease. If I had been diagnosed 5 years ago, it wouldn't be as easy to fight this.
4. Chemo is certainly making a mess out of my sleep cycle. I have always been a great sleeper -- fall right asleep, sleep all night, then wake up with the alarm. But not anymore -- Thursday nights I seem to get no sleep at all, mainly due to the steroids I am on before the chemo. But then I have a major crash on Friday night, and then am sort of caught up by Sunday. Then it starts all over on Thursday again! The good news is that I am still not experiencing any nausea -- those anti-nausea drugs are also doing a damn fine job :-)
5. I know that the power of science is helping me a lot, but all your thoughts and prayers are doing the trick too. I am a firm believer in medical science, but I also know the power of positive thinking and how all of you are contributing to my recovery with your prayers, thoughts and your support. I know I could not do this alone. Thank you for your help!
Have a wonderfully peaceful New Year :-)
Love Val
P.S. I know there are family members and maybe some friends for whom I don't have email addresses. I don't mind if you forward these messages to them, or just tell me their email addresses and I will include them next time. People have told me they like getting the updates, because then when they see me they don't have to ask a whole bunch of questions. And I love sending them because then I don't forget what I have told one person, but maybe not another person...you know what I mean.
1. My bet is that my hair will be completely gone by Monday. If I was really bored and wanted to move it along a bit, I would grab some duct tape and see how many pieces I could get in one try. It would make an interesting party game perhaps if everyone had their own piece of duct tape... In a sort of a weird way it feels pretty cool to pull it out. A few minutes ago I was yanking a bunch out in front of the mirror, and as I pulled out clumps, I said to myself "I can't believe this doesn't bother me more." (out loud of course--I think I am talking to myself way more than is healthy lately). It sort of surprises me that losing my hair doesn't bother me. I think it's because I am excited to wear the wigs. The sad part is that I only have one wig on hand so far (well, two if you count the Packer wig from Brenda, which is blond but isn't exactly appropriate for all social situations). The other three are on their way and I have been trying to sweet-talk the crazy wig people in California into rushing the order....we'll soon see whether my charm worked or not.
3. The tumor is 1/4 of its original size--how cool is that??!!?! And that's after only three treatments. I asked my oncologist more about Herceptin, which is one of the chemo drugs I get -- it's the one that is specific to my type of cancer cell, and is the main one doing such an amazing job on this tumor. Herceptin has only been in wide use for the last three or so years. Just goes to show what an impact that research has had on this disease. If I had been diagnosed 5 years ago, it wouldn't be as easy to fight this.
4. Chemo is certainly making a mess out of my sleep cycle. I have always been a great sleeper -- fall right asleep, sleep all night, then wake up with the alarm. But not anymore -- Thursday nights I seem to get no sleep at all, mainly due to the steroids I am on before the chemo. But then I have a major crash on Friday night, and then am sort of caught up by Sunday. Then it starts all over on Thursday again! The good news is that I am still not experiencing any nausea -- those anti-nausea drugs are also doing a damn fine job :-)
5. I know that the power of science is helping me a lot, but all your thoughts and prayers are doing the trick too. I am a firm believer in medical science, but I also know the power of positive thinking and how all of you are contributing to my recovery with your prayers, thoughts and your support. I know I could not do this alone. Thank you for your help!
Have a wonderfully peaceful New Year :-)
Love Val
P.S. I know there are family members and maybe some friends for whom I don't have email addresses. I don't mind if you forward these messages to them, or just tell me their email addresses and I will include them next time. People have told me they like getting the updates, because then when they see me they don't have to ask a whole bunch of questions. And I love sending them because then I don't forget what I have told one person, but maybe not another person...you know what I mean.
December 16, 2004
Today was round three of chemo. They reduced the amounts of two
of the chemo drugs because my white blood cell count was even lower
this week. So I feel pretty well right now and I will hopefully
write a better note this time; no big chemo hangover -- at least not as
much as two weeks ago!
Because of the white blood cell count issue I am going to try to stay away from shaking hands or any type of contact where I could catch a virus. Shannon gave me ideas about meditation to concentrate on multiplying my cells, and I had to laugh at myself yesterday. I actually was talking out loud to my white blood cells in the car..."Ok you guys...if you all multiply NOW, I will have twice as many of you. Ready...GO!" And then I said (also out loud) "I cannot believe I am driving around talking to my blood."
The other thing I found out today is that I will have six months of chemo AFTER my surgery, THEN radiation!! When John and I met with Ray the day I got my biopsy results and talked about the science behind my treatment, we were pretty focused on the concept of chemo before surgery. I never even asked the oncologist about more chemo. But of course I am still doing fine with that news--it's a bummer but what can you do? It will just make vacations and things like chaperoning Charlie's DC trip in April an impossibility until late fall (I am so glad I bought trip insurance for DC :-) And I am REALLY glad I bought so many wigs -- I am going to need them!!!
ALSO--I am so grateful that so many of you have contacted Genie about bringing meals over. You can't believe what a life saver that has been. It is really helping. I was concerned that Genie wouldn't get through all the names on the list, but with this news, she may need a round 2 for meals :-) I called Genie today and told her that she can back off on the requirement that the food not have strong tastes or odors, at least for now (I told her that she should still tell people to avoid the really wild stuff with really strong smells like Cajun, spicy Thai, etc -- I don't want to push my luck). The anti-nausea drugs have really helped. Sometimes I get a butterfly effect going on in my belly, but no nausea yet--thanks goodness!
This week I felt fine started Monday about noon -- I almost felt like nothing was wrong with me. Too bad the whole cycle has to start over every Thursday!
I will only send updates if there is new news, so if you don't hear from me for a week or two, have an awesome holiday :-)
Because of the white blood cell count issue I am going to try to stay away from shaking hands or any type of contact where I could catch a virus. Shannon gave me ideas about meditation to concentrate on multiplying my cells, and I had to laugh at myself yesterday. I actually was talking out loud to my white blood cells in the car..."Ok you guys...if you all multiply NOW, I will have twice as many of you. Ready...GO!" And then I said (also out loud) "I cannot believe I am driving around talking to my blood."
The other thing I found out today is that I will have six months of chemo AFTER my surgery, THEN radiation!! When John and I met with Ray the day I got my biopsy results and talked about the science behind my treatment, we were pretty focused on the concept of chemo before surgery. I never even asked the oncologist about more chemo. But of course I am still doing fine with that news--it's a bummer but what can you do? It will just make vacations and things like chaperoning Charlie's DC trip in April an impossibility until late fall (I am so glad I bought trip insurance for DC :-) And I am REALLY glad I bought so many wigs -- I am going to need them!!!
ALSO--I am so grateful that so many of you have contacted Genie about bringing meals over. You can't believe what a life saver that has been. It is really helping. I was concerned that Genie wouldn't get through all the names on the list, but with this news, she may need a round 2 for meals :-) I called Genie today and told her that she can back off on the requirement that the food not have strong tastes or odors, at least for now (I told her that she should still tell people to avoid the really wild stuff with really strong smells like Cajun, spicy Thai, etc -- I don't want to push my luck). The anti-nausea drugs have really helped. Sometimes I get a butterfly effect going on in my belly, but no nausea yet--thanks goodness!
This week I felt fine started Monday about noon -- I almost felt like nothing was wrong with me. Too bad the whole cycle has to start over every Thursday!
I will only send updates if there is new news, so if you don't hear from me for a week or two, have an awesome holiday :-)
December 9, 2004
This week I don't feel the same kind of the chemo hangover as I did
last Thursday, so perhaps my update this time will be a bit more
coherent! This week they gave me half the levels of some of the
pre-meds that (1) prevent a reaction to the chemo drugs and (2) prevent
nausea. Tonight I feel less like I have had three glasses of wine
than I did last week!
Round 2 chemo was this morning; went fine. The good news is that Jack Swanson said that the tumor is smaller than last week and whatever lymph nodes that he felt before have decreased quite a bit in size. Shannon came to my chemo session today to give me a bunch of ideas about meditation and mind/spirit/body. She is so good with that stuff; I am so fortunate to have her and so many other friends helping with all this! I also asked her about the best color to paint my bedroom--I want to paint it a healing and relaxing color since I will be in there more often than usual over the next couple months. Every little thing helps :-)
Some of you heard the rumors that I went to spin classes this week. That is true. I attended last Friday and I taught on Monday. Skipped Wednesday because I had a killer headache on Tuesday. Keeping up with exercise is good for me, and I am keeping my heart rate lower than usual. I know some of you think I am crazy for continuing, but the doc said that the people who become couch potatoes do more poorly with their recoveries. He gave me the OK to do the biking and the OK to have a glass of wine once in awhile :-)
You all are really the best part of this process for me. I can deal with the health care part (although I know that I will hate the puking part!!) but without all the support I have received from good friends and family members, I would be lost. I have gotten the most amazing and inspiring notes from people (even some from people I don't know very well). I keep them all together and I read them often.
I know that Genie said there should be no thank you notes required for dinners and gifts, but you all know hard it is to stop my creative and graphic design compulsiveness. I felt the need to design a thank you postcard -- I won't have to write much on it, because there will be words pre-printed on it, so don't get crazy on me, Genie. I promise it won't be a lot of work for me :-)
Anyway, that's enough for tonight--keep those good vibes, thoughts and prayers headed my way -- I think there are working pretty well :-)
Round 2 chemo was this morning; went fine. The good news is that Jack Swanson said that the tumor is smaller than last week and whatever lymph nodes that he felt before have decreased quite a bit in size. Shannon came to my chemo session today to give me a bunch of ideas about meditation and mind/spirit/body. She is so good with that stuff; I am so fortunate to have her and so many other friends helping with all this! I also asked her about the best color to paint my bedroom--I want to paint it a healing and relaxing color since I will be in there more often than usual over the next couple months. Every little thing helps :-)
Some of you heard the rumors that I went to spin classes this week. That is true. I attended last Friday and I taught on Monday. Skipped Wednesday because I had a killer headache on Tuesday. Keeping up with exercise is good for me, and I am keeping my heart rate lower than usual. I know some of you think I am crazy for continuing, but the doc said that the people who become couch potatoes do more poorly with their recoveries. He gave me the OK to do the biking and the OK to have a glass of wine once in awhile :-)
You all are really the best part of this process for me. I can deal with the health care part (although I know that I will hate the puking part!!) but without all the support I have received from good friends and family members, I would be lost. I have gotten the most amazing and inspiring notes from people (even some from people I don't know very well). I keep them all together and I read them often.
I know that Genie said there should be no thank you notes required for dinners and gifts, but you all know hard it is to stop my creative and graphic design compulsiveness. I felt the need to design a thank you postcard -- I won't have to write much on it, because there will be words pre-printed on it, so don't get crazy on me, Genie. I promise it won't be a lot of work for me :-)
Anyway, that's enough for tonight--keep those good vibes, thoughts and prayers headed my way -- I think there are working pretty well :-)
December 3, 2004
Well, guys, I guess the chemo gave me more of a drug hangover than I
realized. My writing skills have never been as dismal as they
were last night. Hopefully you could make a little sense out of
my ramblings last night -- and I know some of you got a chuckle out of
reading the strange words that were coming from a usually good writer
:-)
The bottom line is that I am doing pretty well...
Love Val
:-)
The bottom line is that I am doing pretty well...
Love Val
December 2,2004
(this is the one I sent where I was drunk on chemo :- )
Vals Scoops on Recovery....
If you don't want to be included my email updates, please send me a note and I will stop sending them. Please know that you aren't expected to respond--this is just my way of keeping everyone informed. Most of you I talk to in person or on the phone, but sometimes I forget to tell you everything.
Monday I had an MRI on the left (affected) side. The other side was done Wednesday evening. Those tests were to get a clearer idea about the positioning of the cancer. Tuesday I had a total body scan to see if there the cancer was localized or if it had spread to other areas. It appears that the tumor is close to the chest wall but has not treaveled to that tissue. The body scan didn't show evidence that the cencer cells have travelled. The scans are fairly accurate, so I am please to hear that we are only dealing with cancer in the breast, but I know that the scans are not an exact science so I will keep an open mind about changing the course of treatment at some point :-)
I started chemo today and it went well. I feel tired, mainly due to the anti-nausia meds, I think. I am just so glad to have all those little chemo nano-probes out there waging my war for me--it's nice to have them on my side!
The chemo will last at least two months, once a week. After that I will have surgery for whatever is left, to be followed by radiation. Ray Georgen continues to be my guardian angel on the medical sisde -- he sometimes readds my fils before the radiologists see them! He couldn't beat Tom Tolly yesterday though, since I was at St. E's :-) And Genie has a sophistcated speadsheet that contains info on the dinners people are bringing and the car pools for the kids. It make me cry when I think of our friends and how supportive you all are. I know that many of you have asked what you can do for us, and I still don't know the answer to that exactly. I will talk to Genie and Brenda and find out what I might need and I will email a list of ideas (Genie is still in chargee of the food part) -- if you want that list, please send me an email and I will get it to you. Unfortunately I haven't kept a very good list of the literally dozens of people who have offered to help drive, make food, etc. I am so amazingly blessed by each of you :-)
The kids are still doing well. Charlie butched his hair off this week in support of my soon-to-be-bald head. He is also talking about having a fundraising party with his friends for Christine Ann Domestic Abuse. I usually do one this time of year, but it was cancelled for obvious reasons (Pam, don't get your hopes up--he is thinking he will collect $2 each at the door).
Please keep the thoughts and prayers coming :-)
I will keep you posted!!
Love Val
Vals Scoops on Recovery....
If you don't want to be included my email updates, please send me a note and I will stop sending them. Please know that you aren't expected to respond--this is just my way of keeping everyone informed. Most of you I talk to in person or on the phone, but sometimes I forget to tell you everything.
Monday I had an MRI on the left (affected) side. The other side was done Wednesday evening. Those tests were to get a clearer idea about the positioning of the cancer. Tuesday I had a total body scan to see if there the cancer was localized or if it had spread to other areas. It appears that the tumor is close to the chest wall but has not treaveled to that tissue. The body scan didn't show evidence that the cencer cells have travelled. The scans are fairly accurate, so I am please to hear that we are only dealing with cancer in the breast, but I know that the scans are not an exact science so I will keep an open mind about changing the course of treatment at some point :-)
I started chemo today and it went well. I feel tired, mainly due to the anti-nausia meds, I think. I am just so glad to have all those little chemo nano-probes out there waging my war for me--it's nice to have them on my side!
The chemo will last at least two months, once a week. After that I will have surgery for whatever is left, to be followed by radiation. Ray Georgen continues to be my guardian angel on the medical sisde -- he sometimes readds my fils before the radiologists see them! He couldn't beat Tom Tolly yesterday though, since I was at St. E's :-) And Genie has a sophistcated speadsheet that contains info on the dinners people are bringing and the car pools for the kids. It make me cry when I think of our friends and how supportive you all are. I know that many of you have asked what you can do for us, and I still don't know the answer to that exactly. I will talk to Genie and Brenda and find out what I might need and I will email a list of ideas (Genie is still in chargee of the food part) -- if you want that list, please send me an email and I will get it to you. Unfortunately I haven't kept a very good list of the literally dozens of people who have offered to help drive, make food, etc. I am so amazingly blessed by each of you :-)
The kids are still doing well. Charlie butched his hair off this week in support of my soon-to-be-bald head. He is also talking about having a fundraising party with his friends for Christine Ann Domestic Abuse. I usually do one this time of year, but it was cancelled for obvious reasons (Pam, don't get your hopes up--he is thinking he will collect $2 each at the door).
Please keep the thoughts and prayers coming :-)
I will keep you posted!!
Love Val
November 26, 2004
I apologize for giving you this news via email--I'd prefer writing
individual communications rather than "mass-emailing." By the
time you finish reading this I think you will understand why I needed
to do it this way.
This week I was diagnosed with breast cancer. I had a somewhat routine mammogram Monday (I say "somewhat" because it was a scheduled mammogram, but a few weeks before that I started experiencing drastic changes in the shape and feel of one of my breasts).
(Before I get into details....This paragraph is only for people who don't live in Neenah or don't know my friends...before you read on I need to tell you about Ray and Genie Georgen. They are close friends of ours, but in addition to that, Ray is a surgeon and Genie was an oncology nurse before she had children. Genie is already helping with the infrastructure of everything (has offered to coordinate people bringing meals for my family when I'm having chemo, etc.) Ray has so far made my diagnosis process happen very quickly, and will be helping John and I make informed decisions throughout the treatment phase.)
Here is what has happened to me between Monday morning and today:
-During my mammogram on Monday, the technician took extra films, which is common for my mammograms because of the dense nature of my breast tissue. When the tech re-entered the room to take the additional films, I sensed that she was a bit unsettled, which was the first thing to tip me off that something wasn't normal.
-When the radiologist came in with the films, I asked for his opinion, and he told me that he thought the images indicated cancer. He pointed out a number of tiny calcifications on the film.
- When I left Mercy Oakwood I took my films and drove to Neenah. While en route I called Genie to see if Ray would be able to see me for a few minutes to give me his opinion. I also had baseline films from July 2003. I talked with Ray at his office and he lined up a biopsy for the next morning (same place - Mercy Oakwood - fortunately for me the radiologist was Katrina Rosculet, another friend).
- Tuesday morning I had the biopsy-it is a process like taking mini core samples from tissue deep inside the breast. I thought I would have to wait 2 days for the results.
- However on Wednesday morning, Ray called with the result, which, as I suspected, was positive for cancer. Ray arranged for an appointment with an oncologist for Friday morning (today).
- Today John and I met with the oncologist. Chemo will start on Thursday the 2nd. I have a ton of tests before then to help pinpoint the exact chemo meds I will be given. The science of treating breast cancer is very complicated (and I am glad I am not living in the 1960sand going through this!)
- I will have surgery after the chemo is finished.
I imagine that after reading this you are feeling pretty upset. I wanted people to hear this news directly from me, in person, but it would have been hard for me to continuously repeat all these details about the diagnosis and about what has happened up until now. I am sure that some might think that email is an impersonal way to tell a story like this, but to me it was easier, given how fast everything has happened.
I am doing VERY well with this. I have not reacted yet with any of the typical "why me" attitude and I am not feeling angry. Others have had this diagnosis in the past and others will follow me. I know this is survivable. The only times I have gotten teary-eyed are when I think about how my kids (and my husband) are going to handle this, and when I tell other people and I see or hear their reaction. So that's why it's easier for me to write all this down for you - then you can freak out while you read it and be calmer when you call me or see me :- )
And I expect you to call me or somehow stay in touch - I want and need to keep contact with my friends and family members. I admit that I am a "social butterfly," so I know I won't be happy unless I continue to talk to people. But I also know that tough days are ahead and that at times I won't be up for seeing anybody.
You are all great people and so you might be wondering what you can do to help. Thoughts and prayers are the best thing right now. At this point I don't know when we will need anything or even what we will need. Genie will be setting up some sort of food schedule for the days following chemo. The guys should contact John from time to time to see how he is doing, since I know that he will take this harder than I will (his cell is 427-6489). And I am sure we will need help with car pool stuff. Right now I have more questions than answers :-)
We told the kids tonight and we were really worried about how it would go. But it was really a wonderful conversation and they are (so far) really cool with it. It helped us a lot to have friends who have gone through this before -- we got good ideas from them about what to say.
One favor you can do for me: if you are a woman, get a regular mammogram as directed your primary care physician. If you're a guy, insist that the women in your life who are around age 40 or older get their scheduled mammogram. And if you are doing tax-planning right now and can't figure out what to do with all your extra money, consider a donation to one of the local breast cancer centers (the one I used is at Mercy Oakwood). Donated funds can be directed to educating area women about the importance of mammograms and to cover the costs for those who don't have the means to pay for one.
I am going to be completely open with everyone about my diagnosis because I believe that education about this disease is one of the best weapons we have. I don't want to keep it a secret that I have breast cancer--that will do no one any good! I stress again to you that I am doing really well. Almost too well-I am wondering when the part where I break down and get mad happens. As most of you know, I don't get extremely upset very often, and I have always tried to have a positive attitude about EVERYTHING. I have this diagnosis, there is nothing I can do to change it, and so I will fight it and I will get better. It's something I will deal with and get through with the support of everyone around me!
Thanks for your thoughts, your prayers, and your friendship :-)
This is going to be one wild ride!!
Val
P.S. It's likely that I will be sporting the Sinead O'Conner look very soon--that may end up to be a very good look for me. Anyone have any cool hats they want to lend me???
This week I was diagnosed with breast cancer. I had a somewhat routine mammogram Monday (I say "somewhat" because it was a scheduled mammogram, but a few weeks before that I started experiencing drastic changes in the shape and feel of one of my breasts).
(Before I get into details....This paragraph is only for people who don't live in Neenah or don't know my friends...before you read on I need to tell you about Ray and Genie Georgen. They are close friends of ours, but in addition to that, Ray is a surgeon and Genie was an oncology nurse before she had children. Genie is already helping with the infrastructure of everything (has offered to coordinate people bringing meals for my family when I'm having chemo, etc.) Ray has so far made my diagnosis process happen very quickly, and will be helping John and I make informed decisions throughout the treatment phase.)
Here is what has happened to me between Monday morning and today:
-During my mammogram on Monday, the technician took extra films, which is common for my mammograms because of the dense nature of my breast tissue. When the tech re-entered the room to take the additional films, I sensed that she was a bit unsettled, which was the first thing to tip me off that something wasn't normal.
-When the radiologist came in with the films, I asked for his opinion, and he told me that he thought the images indicated cancer. He pointed out a number of tiny calcifications on the film.
- When I left Mercy Oakwood I took my films and drove to Neenah. While en route I called Genie to see if Ray would be able to see me for a few minutes to give me his opinion. I also had baseline films from July 2003. I talked with Ray at his office and he lined up a biopsy for the next morning (same place - Mercy Oakwood - fortunately for me the radiologist was Katrina Rosculet, another friend).
- Tuesday morning I had the biopsy-it is a process like taking mini core samples from tissue deep inside the breast. I thought I would have to wait 2 days for the results.
- However on Wednesday morning, Ray called with the result, which, as I suspected, was positive for cancer. Ray arranged for an appointment with an oncologist for Friday morning (today).
- Today John and I met with the oncologist. Chemo will start on Thursday the 2nd. I have a ton of tests before then to help pinpoint the exact chemo meds I will be given. The science of treating breast cancer is very complicated (and I am glad I am not living in the 1960sand going through this!)
- I will have surgery after the chemo is finished.
I imagine that after reading this you are feeling pretty upset. I wanted people to hear this news directly from me, in person, but it would have been hard for me to continuously repeat all these details about the diagnosis and about what has happened up until now. I am sure that some might think that email is an impersonal way to tell a story like this, but to me it was easier, given how fast everything has happened.
I am doing VERY well with this. I have not reacted yet with any of the typical "why me" attitude and I am not feeling angry. Others have had this diagnosis in the past and others will follow me. I know this is survivable. The only times I have gotten teary-eyed are when I think about how my kids (and my husband) are going to handle this, and when I tell other people and I see or hear their reaction. So that's why it's easier for me to write all this down for you - then you can freak out while you read it and be calmer when you call me or see me :- )
And I expect you to call me or somehow stay in touch - I want and need to keep contact with my friends and family members. I admit that I am a "social butterfly," so I know I won't be happy unless I continue to talk to people. But I also know that tough days are ahead and that at times I won't be up for seeing anybody.
You are all great people and so you might be wondering what you can do to help. Thoughts and prayers are the best thing right now. At this point I don't know when we will need anything or even what we will need. Genie will be setting up some sort of food schedule for the days following chemo. The guys should contact John from time to time to see how he is doing, since I know that he will take this harder than I will (his cell is 427-6489). And I am sure we will need help with car pool stuff. Right now I have more questions than answers :-)
We told the kids tonight and we were really worried about how it would go. But it was really a wonderful conversation and they are (so far) really cool with it. It helped us a lot to have friends who have gone through this before -- we got good ideas from them about what to say.
One favor you can do for me: if you are a woman, get a regular mammogram as directed your primary care physician. If you're a guy, insist that the women in your life who are around age 40 or older get their scheduled mammogram. And if you are doing tax-planning right now and can't figure out what to do with all your extra money, consider a donation to one of the local breast cancer centers (the one I used is at Mercy Oakwood). Donated funds can be directed to educating area women about the importance of mammograms and to cover the costs for those who don't have the means to pay for one.
I am going to be completely open with everyone about my diagnosis because I believe that education about this disease is one of the best weapons we have. I don't want to keep it a secret that I have breast cancer--that will do no one any good! I stress again to you that I am doing really well. Almost too well-I am wondering when the part where I break down and get mad happens. As most of you know, I don't get extremely upset very often, and I have always tried to have a positive attitude about EVERYTHING. I have this diagnosis, there is nothing I can do to change it, and so I will fight it and I will get better. It's something I will deal with and get through with the support of everyone around me!
Thanks for your thoughts, your prayers, and your friendship :-)
This is going to be one wild ride!!
Val
P.S. It's likely that I will be sporting the Sinead O'Conner look very soon--that may end up to be a very good look for me. Anyone have any cool hats they want to lend me???
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