I just had to add this to my blog. It is just so wonderful. I did make me cry though .... but happy tears.
http://www.wimp.com/inspireyou/
Sunday, February 10, 2013
Saturday, July 28, 2012
Inflammatory Breast Cancer - I'm still here!!!!
Let me begin by apologizing for not having posted on this site for such a long time. I apologize to anyone who has been searching the Internet looking for hope, looking for anyone who has survived this horrible disease. I remember being that person. That's why I started this website. I am now 7 years away from my diagnosis. I have maintained my vigilance and done all of the required doctor visits and tests. To date I am cancer free. I am guilty however of trying to distance myself from the events of 7 years ago. I know what you are going through. Even while I write this I well up with tears thinking of the arduous journey I went through and that you or someone you love is going through. As I approach the 7th year anniversary of my diagnosis I have to bring myself back to these events if only for an hour or so. I have to give hope to you. I have survived. I have moved on. I am living an awesome life now filled with art, social activities and family. We are expecting our first grandchild any day. I am here to welcome her. Am I the same person that I was before the diagnosis? Absolutely not. I deal with only little things at this point though. I have a bit of a weakened immune system. I can't always run with the big kids. I have to recognize that I need to pull back occasionally to regroup. Such minor inconveniences as compared to how I was living going through treatment.
I was approached recently by a family member whose husband had recently gone through some rather nasty, actually horribly nasty, cancer stuff. She said he was angry about losing the man he once was. I didn't remember that anger until I thought about it for awhile. Everyone who goes through cancer leaves so much of themselves behind. If it isn't parts of their body it's parts of their mind, their very soul. We all mourn for what was. That's our right. We are angry. We are sad. We all handle it differently and we handle it differently each day. But at the end of the day and after 7 years of trying to move away from this horrible disease I have to say, there is no anger there is only a gratefulness for each day. There is a need to not let anything slip by. There is a need to live life large and with a huge smile on my face.
Again I apologize to anyone who has been searching for a positive take on IBC. I just did a quick search to see if there was anything new or different about this on the web. It is still all doom and gloom. The prognosis data has improved by only single digits. So, please take my story and make it yours. Know that there is hope out there. Know that real people do survive and live a wonderful life. If you want to get a real kick check out the Clearwater Dolphin Project facebook page. I just completed a 6 foot tall dolphin with my very pregnant daughter. He will soon be on display on Clearwater Beach, Florida. How's that for living large?
I was approached recently by a family member whose husband had recently gone through some rather nasty, actually horribly nasty, cancer stuff. She said he was angry about losing the man he once was. I didn't remember that anger until I thought about it for awhile. Everyone who goes through cancer leaves so much of themselves behind. If it isn't parts of their body it's parts of their mind, their very soul. We all mourn for what was. That's our right. We are angry. We are sad. We all handle it differently and we handle it differently each day. But at the end of the day and after 7 years of trying to move away from this horrible disease I have to say, there is no anger there is only a gratefulness for each day. There is a need to not let anything slip by. There is a need to live life large and with a huge smile on my face.
Again I apologize to anyone who has been searching for a positive take on IBC. I just did a quick search to see if there was anything new or different about this on the web. It is still all doom and gloom. The prognosis data has improved by only single digits. So, please take my story and make it yours. Know that there is hope out there. Know that real people do survive and live a wonderful life. If you want to get a real kick check out the Clearwater Dolphin Project facebook page. I just completed a 6 foot tall dolphin with my very pregnant daughter. He will soon be on display on Clearwater Beach, Florida. How's that for living large?
Wednesday, October 14, 2009
Think before you Pink
Another great site to look at. All I am asking is that we think.
http://bcaction.org/
http://bcaction.org/
Pink - are we blinded by it?
I just finished reading this article in the St. Petersburg Times. It says everything that I have thought but have felt like a traitor saying. It asks questions that all of us need to ask. Just because a product is pink, a party is pink, a fund raiser is pink, it does not mean anything. We all need to be educated consumers. Especially in this day and age. Our money, our time, our emotions are to precious. There are too many organizations out there waiting in the wings to pray on us. We all want to do something to help. We just have to find the right way. I think maybe we need to put faces on causes. Instead of supporting organizations maybe we donate time, money directly to someone in need through our local hospitals, church or schools. Maybe we research a specific team that looks into the cause of cancer, or one that looks into your particular type of cancer. We have a beautiful thing - this internet. We need to use it to research how and what we want to support instead of blindly following the pink road. http://http://www.tampabay.com/opinion/columns/think-pink-hold-on/1040821
Tuesday, June 9, 2009
Miami Breast Cancer Conference
Here is some recent information about Inflammatory breast cancer found in CURE Magazine. There is hope. We are not being forgotten. The medical field is still trying to figure us out. They are making great strides.
INFORMATION FROM CURE MAGAZINE
June 2009
Miami Breast Cancer Conference
Treatment Updates From the Miami Breast Cancer Conference
BY DEBU TRIPATHY, MD
New Insights Into Inflammatory Breast Cancer
Inflammatory breast cancer is responsible for about 1 to 5 percent of all new breast cancer diagnoses in the United States and is more common in younger and African-American women. It has an aggressive behavior, and in the past was associated with a 90 to 95 percent mortality rate, which has improved significantly with the use of chemotherapy and biological therapy, including Herceptin (trastuzumab) for HER2-positive breast cancers, followed by surgery and radiation, with about 40 percent of patients now surviving.
IBC cells tend to have a higher grade and are more likely to be negative for hormone receptors and positive for HER2 protein overexpression—all markers of higher risk. It has recently been suggested from gene profiling studies that IBC and non-IBC are distinct biologic entities and may have differences in signaling pathways and angiogenesis, the formation of blood vessels to the tumor. There are specific proteins that give IBC a tendency to hone in on blood vessels in the skin, a feature that gives IBC its name owing to the redness and swelling in the skin over the breast. Clinical trials using newer HER2-targeting therapies, such as Tykerb (lapatinib) for HER2-positive IBC or the antiangiogenic agent Avastin (bevacizumab), show promising results with response rates higher than seen with conventional therapies.
The discovery of unique pathways, in addition to those driven by HER2 overexpression, has revealed many new targets for future trials. In addition, imaging tests such as MRI (magnetic resonance imaging) and PET (positron emission tomography) scans may be valuable tools to assess early response and to compare different drugs being evaluated in clinical trials. There is still much room for improvement in the early detection and better tailored treatment for this unusual variant of breast cancer.
INFORMATION FROM CURE MAGAZINE
June 2009
Miami Breast Cancer Conference
Treatment Updates From the Miami Breast Cancer Conference
BY DEBU TRIPATHY, MD
New Insights Into Inflammatory Breast Cancer
Inflammatory breast cancer is responsible for about 1 to 5 percent of all new breast cancer diagnoses in the United States and is more common in younger and African-American women. It has an aggressive behavior, and in the past was associated with a 90 to 95 percent mortality rate, which has improved significantly with the use of chemotherapy and biological therapy, including Herceptin (trastuzumab) for HER2-positive breast cancers, followed by surgery and radiation, with about 40 percent of patients now surviving.
IBC cells tend to have a higher grade and are more likely to be negative for hormone receptors and positive for HER2 protein overexpression—all markers of higher risk. It has recently been suggested from gene profiling studies that IBC and non-IBC are distinct biologic entities and may have differences in signaling pathways and angiogenesis, the formation of blood vessels to the tumor. There are specific proteins that give IBC a tendency to hone in on blood vessels in the skin, a feature that gives IBC its name owing to the redness and swelling in the skin over the breast. Clinical trials using newer HER2-targeting therapies, such as Tykerb (lapatinib) for HER2-positive IBC or the antiangiogenic agent Avastin (bevacizumab), show promising results with response rates higher than seen with conventional therapies.
The discovery of unique pathways, in addition to those driven by HER2 overexpression, has revealed many new targets for future trials. In addition, imaging tests such as MRI (magnetic resonance imaging) and PET (positron emission tomography) scans may be valuable tools to assess early response and to compare different drugs being evaluated in clinical trials. There is still much room for improvement in the early detection and better tailored treatment for this unusual variant of breast cancer.
Monday, November 17, 2008
Army of Women & the Sister Study
I just signed up for the Army of Women with Dr. Susan Love. The article that I pasted below was from that site. I would suggest that every woman sign on to this site. You don't have to do anything but put your contact information up. You will get information sporadically about studies that you might want to participate in. You are not obligated to do anything but be informed. http://www.armyofwomen.org/
I am thankful to all of the women, including one of my sisters, who are all ready participating in the Sister Study.
The Success of the Sister Study
Posted by Dr. Susan Love at 12:23 pm
We did it! I always thought that an Army of Women would step up to the plate, but this week we proved it.
The first “Call to Action” was sent out on Tuesday, October 28, and the response was incredible.The Sister Study has been recruiting sisters of women who have had breast cancer since it was started in 2002. Their goal is to recruit 50,000 diverse women from all walks of life. They told us that they needed to recruit just 5000 more women, and that they specifically needed African American women, Latinas, and white women with only a high school education.We knew that a number of the women who had enrolled in the Army of Women would not fit that description. But the amazing news is that over 2200 of you not only did fit the description, but signed up for the Sister Study within 24 hours! The scientists running the Sister Study were ecstatic—and so are we.No matter what type of research you are doing, one thing stays the same: The faster you recruit the people you need, the faster you figure out the answers. If you know anyone that fits the description the Sister Study researchers need, please, please, please send them to the Army of Women!
There are now more than 240,000 women in the Army of Women. I would love to hit 300,000 before the end of the month. So get to work recruiting! And stay tuned for our second Call to Action!
Thanks!Susan Love
I am thankful to all of the women, including one of my sisters, who are all ready participating in the Sister Study.
The Success of the Sister Study
Posted by Dr. Susan Love at 12:23 pm
We did it! I always thought that an Army of Women would step up to the plate, but this week we proved it.
The first “Call to Action” was sent out on Tuesday, October 28, and the response was incredible.The Sister Study has been recruiting sisters of women who have had breast cancer since it was started in 2002. Their goal is to recruit 50,000 diverse women from all walks of life. They told us that they needed to recruit just 5000 more women, and that they specifically needed African American women, Latinas, and white women with only a high school education.We knew that a number of the women who had enrolled in the Army of Women would not fit that description. But the amazing news is that over 2200 of you not only did fit the description, but signed up for the Sister Study within 24 hours! The scientists running the Sister Study were ecstatic—and so are we.No matter what type of research you are doing, one thing stays the same: The faster you recruit the people you need, the faster you figure out the answers. If you know anyone that fits the description the Sister Study researchers need, please, please, please send them to the Army of Women!
There are now more than 240,000 women in the Army of Women. I would love to hit 300,000 before the end of the month. So get to work recruiting! And stay tuned for our second Call to Action!
Thanks!Susan Love
Wednesday, June 4, 2008
BUT I AM ALIVE
I have been asked to submit an essay for a book publication. I am honored that I would be asked to do this and I take the responsibility very seriously. This book, as i understand it, is being created by two people who I have great respect for. One is top doctor in the field of I.B.C. and the other is a mother of a victim of I.B.C.
The article is supposed to be a type of diary of what happened to me on my road to becoming a survivor of this disease. So, while I write for them I will write for my blog.
BUT I AM ALIVE
Today before I put on my bright colored blouse and big bold earrings I think I look like a boy. My hair has grown in baby fine & sparse and the only solution seems to be to keep it cut short short short like a boy’s. My body matches my boy’s hair cut as I had a bi-lateral mastectomy without reconstruction. “BUT I AM ALIVE” and that is my mantra.
On August 15, 2005 I was diagnosed with Inflammatory Breast Cancer. The diagnosis of “Inflammatory Breast Cancer” was never spoken out loud to me though she told me that I had breast cancer and wrote Inflammatory Breast Cancer on my chart. She took a picture of my breasts so that she could show her students something that was so rare they would probably never see it in their careers. She took punch biopsies of my skin while I tried to comprehend what was happening to me. She lined up an appointment with the earliest available oncologist. She set up appointments for CT scans, heart scans, bone scans and blood tests. She handed me the standard breast cancer handbook. She told me it would be best to cancel our much anticipated Alaskan Cruise so that I could get into treatment as soon as possible. I was numb. How could this be my reality?
It had all happened so atypically. I did have a lump but it had grown overnight. I swear I hadn’t felt it before. I had a mammogram a few years earlier and nothing had shown up on that. Breast cancer is supposed to grow slowly. Where were my warnings? Where was my chance to have caught it early? I had blown that opportunity.
The first sign that something was wrong came on July 18, 2005. I had been sketching all evening. We stopped to enjoy a glass of wine and the evening breezes. My right breast began to ache. By the time I was ready to retire my breast had turned red. It was hot and it was swollen. By 3am I had developed hives. My husband drove me to the emergency room. I was diagnosed with “acute allergic urticaria and right breast cellulitis” - No Lump. I was given Keflex and Benadryl and told to see my primary doctor if the symptoms didn’t subside.
On July 20, 2005 I saw my primary physician. She examined me – No Lump. She prescribed another round of antibiotics using Doxycycline and tested me for Lyme disease.
On August 5, 2005 I returned to the Dr.’s office. My right breast still achy, heavy, red and warm but now I felt a lump. She felt the lump and then she felt another lump. She ordered a mammogram but not with any sense of urgency. We still did not fear that this would ever be diagnosed as breast cancer. This was way too odd to be breast cancer.
On August 12, 2005 I had an ultra sound, then a mammogram, and then a biopsy. I proceeded to enjoy the weekend knowing that on Monday I would be seeing a breast surgeon for my results. I was confidant that there would be an explanation for my crazy symptoms and that explanation would not be a diagnosis of breast cancer.
So, on August 15, 2005 when my husband and I prodded my doctor to explain what was going on with me, we were both stunned. After we left the office I poured over my new book trying to make sense of what had just happened to me. I learned about Staging of Cancer. I learned all about the prognosis for each Stage. By a process of connecting the dots I realized that I was not in Stage I or Stage II. I realized that there was a monster out there with the name of Inflammatory Breast Cancer and that I probably had it. I was shocked when I read the book and found lonely 4 sentences in the entire book that talked about IBC.
This time when I planned for my next doctor’s apt. I did not do it with a light heart instead I anticipated that there would be no options for me. I would probably be left to die. The skin biopsies came back negative. I clung to what the doctor said. “Even if it is not pathologically IBC you still have a 6cm tumor that is Her 2 + both of these diagnosis are treated the same”. To me that meant I didn’t have IBC. It wasn’t proven pathologically. I was still Stage IIIb but not IBC. I wasn’t an IBC patient. My odds for beating this disease weren’t as bad. If the truth be told I never accepted the IBC diagnosis until well after treatment ended.
Now I am 3 years away from that date and I will always remember it– like I remember the dates my children were born. Those dates are etched in my mind. Those feelings will never be forgotten. I realize now how absolutely lucky I am to be here today. I am lucky that I developed a lump because I don’t think anyone that I saw would have ever put my symptoms together with a Breast Cancer diagnosis. I would not have pursued the cause of my red, swollen and warm breast. It was just too odd to be Breast Cancer. It had to be something else. I am one of the lucky ones. My IBC was caught “early”.
During my treatments I read an obituary of a young educated woman who was diagnosed just 2 weeks before she died. She lived in an area with access to great medical facilities. She lived in Boston where these symptoms are still not recognized. I now pass out warning pamphlets to other women and to their doctors. These symptoms can’t be ignored. Breast Cancer is more than just a lump. Mammograms are not the defining test. Women have to know that any change to their breasts is not insignificant. I also try to give reassurances to other newly diagnosed women that there is a future for us.
Yes, today I might look like a boy but I put on my colorful blouse and big bold earrings and I chant my mantra – “BUT I AM ALIVE”.
The article is supposed to be a type of diary of what happened to me on my road to becoming a survivor of this disease. So, while I write for them I will write for my blog.
BUT I AM ALIVE
Today before I put on my bright colored blouse and big bold earrings I think I look like a boy. My hair has grown in baby fine & sparse and the only solution seems to be to keep it cut short short short like a boy’s. My body matches my boy’s hair cut as I had a bi-lateral mastectomy without reconstruction. “BUT I AM ALIVE” and that is my mantra.
On August 15, 2005 I was diagnosed with Inflammatory Breast Cancer. The diagnosis of “Inflammatory Breast Cancer” was never spoken out loud to me though she told me that I had breast cancer and wrote Inflammatory Breast Cancer on my chart. She took a picture of my breasts so that she could show her students something that was so rare they would probably never see it in their careers. She took punch biopsies of my skin while I tried to comprehend what was happening to me. She lined up an appointment with the earliest available oncologist. She set up appointments for CT scans, heart scans, bone scans and blood tests. She handed me the standard breast cancer handbook. She told me it would be best to cancel our much anticipated Alaskan Cruise so that I could get into treatment as soon as possible. I was numb. How could this be my reality?
It had all happened so atypically. I did have a lump but it had grown overnight. I swear I hadn’t felt it before. I had a mammogram a few years earlier and nothing had shown up on that. Breast cancer is supposed to grow slowly. Where were my warnings? Where was my chance to have caught it early? I had blown that opportunity.
The first sign that something was wrong came on July 18, 2005. I had been sketching all evening. We stopped to enjoy a glass of wine and the evening breezes. My right breast began to ache. By the time I was ready to retire my breast had turned red. It was hot and it was swollen. By 3am I had developed hives. My husband drove me to the emergency room. I was diagnosed with “acute allergic urticaria and right breast cellulitis” - No Lump. I was given Keflex and Benadryl and told to see my primary doctor if the symptoms didn’t subside.
On July 20, 2005 I saw my primary physician. She examined me – No Lump. She prescribed another round of antibiotics using Doxycycline and tested me for Lyme disease.
On August 5, 2005 I returned to the Dr.’s office. My right breast still achy, heavy, red and warm but now I felt a lump. She felt the lump and then she felt another lump. She ordered a mammogram but not with any sense of urgency. We still did not fear that this would ever be diagnosed as breast cancer. This was way too odd to be breast cancer.
On August 12, 2005 I had an ultra sound, then a mammogram, and then a biopsy. I proceeded to enjoy the weekend knowing that on Monday I would be seeing a breast surgeon for my results. I was confidant that there would be an explanation for my crazy symptoms and that explanation would not be a diagnosis of breast cancer.
So, on August 15, 2005 when my husband and I prodded my doctor to explain what was going on with me, we were both stunned. After we left the office I poured over my new book trying to make sense of what had just happened to me. I learned about Staging of Cancer. I learned all about the prognosis for each Stage. By a process of connecting the dots I realized that I was not in Stage I or Stage II. I realized that there was a monster out there with the name of Inflammatory Breast Cancer and that I probably had it. I was shocked when I read the book and found lonely 4 sentences in the entire book that talked about IBC.
This time when I planned for my next doctor’s apt. I did not do it with a light heart instead I anticipated that there would be no options for me. I would probably be left to die. The skin biopsies came back negative. I clung to what the doctor said. “Even if it is not pathologically IBC you still have a 6cm tumor that is Her 2 + both of these diagnosis are treated the same”. To me that meant I didn’t have IBC. It wasn’t proven pathologically. I was still Stage IIIb but not IBC. I wasn’t an IBC patient. My odds for beating this disease weren’t as bad. If the truth be told I never accepted the IBC diagnosis until well after treatment ended.
Now I am 3 years away from that date and I will always remember it– like I remember the dates my children were born. Those dates are etched in my mind. Those feelings will never be forgotten. I realize now how absolutely lucky I am to be here today. I am lucky that I developed a lump because I don’t think anyone that I saw would have ever put my symptoms together with a Breast Cancer diagnosis. I would not have pursued the cause of my red, swollen and warm breast. It was just too odd to be Breast Cancer. It had to be something else. I am one of the lucky ones. My IBC was caught “early”.
During my treatments I read an obituary of a young educated woman who was diagnosed just 2 weeks before she died. She lived in an area with access to great medical facilities. She lived in Boston where these symptoms are still not recognized. I now pass out warning pamphlets to other women and to their doctors. These symptoms can’t be ignored. Breast Cancer is more than just a lump. Mammograms are not the defining test. Women have to know that any change to their breasts is not insignificant. I also try to give reassurances to other newly diagnosed women that there is a future for us.
Yes, today I might look like a boy but I put on my colorful blouse and big bold earrings and I chant my mantra – “BUT I AM ALIVE”.
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