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
Monday, November 17, 2008
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”.
Tuesday, May 13, 2008
COSMETIC INGREDIENTS CAUSING CANCER?? BUYER BEWARE
Hi All. I just saw a segment on a news program that was very unsettling to me regarding something we all use on a daily basis - cosmetics. Did you know that the European countries have banned many of the ingredients still being used in the cosmetics made and sold in the U.S.A.? These ingredients are listed under the name of "fragrances". Our good old F.D.A never ceases to amaze me. Their protection of the tobacco industry has always infuriated me but now to find out that we have been victims of our trust once again. I just assumed that I could trust that something that was on the shelf was safe to use. Wrong again. Anyway - there is a site where you can check out the products that you all use everyday. http://www.skindeep.com/. This site also has a form that you can submit to your reps so that they will become aware of the fact that no one is watching what is going into what we use every day. When I got the diagnosis of Breast Cancer I started to obsess about what I did that could have brought this on and how I could have taken steps to have prevented it. The reality is that the FDA could have maybe prevented my breast cancer. They should be protecting all of us if that is their primary objective the way European countries protect their citizens. Please feel free to forward this on to as many people as you can. Please look into purchasing only cosmetics that are marked organic or natural. Please check out the above website to see if what you are using could be putting you in danger of getting cancer. Now, I did some research myself. Heaven forbid I trust even a news program. I think the bottom line is buyer beware. No one is watching these products for us. http://www.webmd.com/skin-beauty/features/cosmetics-safety-whats-in-your-makeup-bag is a link to a great article giving both the pros and cons of my warning to all of you. The following is taken from that site. Steps You Can Take To protect yourself, experts who spoke to WebMD offer the following tips for safer cosmetic and personal care use.
When choosing personal care products, remember that simpler is better. This means not only looking for products with fewer chemical ingredients (soap instead of shower gel, or moisturizers without fragrance), but also using fewer products overall.
Think about how necessary a product is before you use it. For example, bubble bath for your baby or for yourself. Do without if you can.
Use your nose as a guide: If a product has a chemical-like odor, think twice about using it or where you will apply it.
Read ingredient labels for ingredients like parabens, but realize that many of the most questionable chemicals (like phthalates) won't be listed; instead, they're contained in the umbrella phrase "fragrance."
Visit product web sites to get more detail on ingredients. Many of them will offer more disclosure than the label does. If you still want to know more, email the company.
Visit www.CosmeticsDataBase.com for an up-to-date cross-reference of more than 22,000 cosmetics and a rating of their chemical ingredients.
Seek out products from companies that have signed the Compact for Safe Cosmetics pledge. Visit www.safecosmetics.org/companies/signers.cfm.
Get the free CD report from Vassar College on environmental links to breast cancer, including the role of cosmetics and personal care products, at www.ERBC.Vassar.edu.
When choosing personal care products, remember that simpler is better. This means not only looking for products with fewer chemical ingredients (soap instead of shower gel, or moisturizers without fragrance), but also using fewer products overall.
Think about how necessary a product is before you use it. For example, bubble bath for your baby or for yourself. Do without if you can.
Use your nose as a guide: If a product has a chemical-like odor, think twice about using it or where you will apply it.
Read ingredient labels for ingredients like parabens, but realize that many of the most questionable chemicals (like phthalates) won't be listed; instead, they're contained in the umbrella phrase "fragrance."
Visit product web sites to get more detail on ingredients. Many of them will offer more disclosure than the label does. If you still want to know more, email the company.
Visit www.CosmeticsDataBase.com for an up-to-date cross-reference of more than 22,000 cosmetics and a rating of their chemical ingredients.
Seek out products from companies that have signed the Compact for Safe Cosmetics pledge. Visit www.safecosmetics.org/companies/signers.cfm.
Get the free CD report from Vassar College on environmental links to breast cancer, including the role of cosmetics and personal care products, at www.ERBC.Vassar.edu.
Friday, May 9, 2008
Another check up behind me
I haven't written in quite awhile. Thought I should update today. I had my 6 month check-up today. A review of blood work, ct scan, as well as a physical exam all proved that I am alive and well and good to go un-tethered to the medical community for another 3 months. I feel good! I have been dealing with a horrible rash and hives for about a month now - kind of brought back memories of when I was first diagnosed. I am relieved to know that it is just my crazy body being hyper sensitive.
Saturday, February 9, 2008
Lifetime finally airs "Top This Party" episode
The Emerald Dream Ball in all it's glory was aired on Lifetime last night. For all those lucky (?) enough to have seen it, I apologize to you. I will not comment further on it except to say that good did come from the event. 13 wonderful women connected for the first time and not for the last time. I feel confident that good will come from that. Good publicity was generated for many of the women and they were then able to promote their causes and from what people have told me prayers were said for Lana throughout the shows airing.
Now, that having been said I must give an update on my situation. I met with my oncologist for my 3 month check up last week. I am still in remission!!! Yeah for us. I met another mile stone on my path to recovery - 2 years have passed since my surgery. Every 2 year mile stone is huge for me. The only 2 year mile stone left for me to achieve is off in the distance - 10/4/08. That is the anniversary of my last treatment for cancer.
Now, that having been said I must give an update on my situation. I met with my oncologist for my 3 month check up last week. I am still in remission!!! Yeah for us. I met another mile stone on my path to recovery - 2 years have passed since my surgery. Every 2 year mile stone is huge for me. The only 2 year mile stone left for me to achieve is off in the distance - 10/4/08. That is the anniversary of my last treatment for cancer.
Friday, January 11, 2008
Got the breast cancer - when do I get the wisdom?
People have said that when they became a breast cancer survivor they gained a new perspective on life. That they became wiser. That they learned to appreciate every day more than they ever did before. That they shunned the negative and turned to the positive. I wish I could say the same. I try. I seem to get stuck. I want to move away but it's like I am drawn to fixing, understanding and trying to control the uncontrolable. So much happened between Christmas and today. The trip was wonderful. I loved it. I guess at this point in my life though I'm not looking for bells and whistles though. I'm looking for family and friends. I'm looking for beautiful sunsets and walks in nature. I'm not looking to be impressed or to impress. I'm looking to make a difference in a world that is so fragile for me. I don't know how many days or years I will have. No one knows that. I just know that I want every day to have meaning. I don't need to be entertained with caviar and champagne - even though that was very nice. I would rather engage in conversation with family, & friends, both old and new friends, over tea and cookies. I'm simple. I've done fancy in my lifetime and it was fun and exciting. I would never fault anyone for wanting that. I just don't need it right now.
Wednesday, January 9, 2008
Back from the Emerald Dream Ball
It's all over now. Put 13 Breast Cancer Survivors in Las Vegas for a week and make that week end with New Year's Eve and begin the day after Christmas and you could never predict what the outcome would be. There were good times. There were bad times. I have to believe that Lana and all of her staff had to have been pushed to their max! They tried to pull off the impossible. An over the top New Year's Eve party that was to be televised for Lifetime TV, coupled with the launching of a clothing line, topped off with trying to keep 13 women from all over the U.S.A. happy would be enough to push anyone over the edge. All of us had different expectations for the week. I went hoping that I would get professional designer help discovering a new fashion style that would suit my new body. Others went thinking that they would get hair extensions that would make them feel better about themselves. I also expected to decompress - don't ask me why i expected to do that in Las Vegas. I think I saw the words pamper and spa and assumed that it would be a relaxing experience. Silly me. Las Vegas by it's very nature is anything but relaxing. We were met at the airport with our names printed on an official Emerald Ball Logo held by our drivers. We met Bill, our videographer, and then we met our volunteer greeter. Such a v.i.p welcome. From there we began our whirlwind week. We did fittings at Lana's Studio. We practised runway walking. We got our faces treated to treatments, our hair cut and styled. We saw shows. We were hosted at Lana and Victor's house for a day of beauty, glamour shots and interviews. We even got a demonstration on how to hustle pool by "Fast Eddy". We ended the week with an as promised over the top New Year's Eve party. Were all our expectations met? - no. Did I get my rest, relaxation or personal help with my wardrobe?- no. Did others get hair extensions - no - but not for lack of trying. Did I get more than I ever hoped for? yes. I came away from the week so much richer for having met the other 12 women that were chosen and their partners. I came away exhausted and run down from trying to keep up with the chaos that ensued from trying to accomplish as much as was set out for us but I know that I will recover. My one real regret is that Lana was so busy trying to accomplish all that she set out on her plate that she didn't get to meet us or for us to really get to know her. I think that that is the real tragedy. I think we all could have grown from that experience.
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