This week I had the honor of representing the young women with breast cancer in Louisiana population at our latest Young Breast Cancer Survivor Advisory Council. I have had the privilege of playing this role since the beginning of the Council. It blows my mind that people would possibly want my opinion on things. I absolutely love it. This is the Council that oversees SurviveDat, the young women with breast cancer support group. I have met some of the most amazing women in the support group and by participating on the Council. I don't know if I've mentioned this yet but we have expanded to include a support group in New Orleans and Covington plus groups in Mississippi (SurviveMiss) and Alabama (SurviveAL). An incredible feat we are proud to have accomplished.
This past April, I was a recipient to a scholarship that allowed me to attend the Third Annual YBCS Conference, in Birmingham, Alabama.
This was one of the best decisions I have ever made. My mom and I hopped in the car and drove the six hours to Birmingham. I swear my mom is Super Woman unveiled. She gets pulled left, right, left, right to be my chauffeur. Anyway, the first night we relaxed. A couple of the girls and I went out to eat and visited and I really enjoyed myself. I let my mom stay and rest after that trip. She wasn't really up for it. After that we went back to our respective rooms to rest for the early morning schedule.
The day was amazing. I'm sad it's only a one day conference, but I know with time it will get bigger. There were break out sessions, booths, a chosen speaker, and Barefoot Soul Yoga Dance! That last one kicked ass. Well, if you don't know, I am on oxygen. I took my oxygen off and got down. It was so much fun. I almost felt normal. As soon as it was over I had to rush and get oxygen. It was worth it. There were moments the leader showed us what to do and free dance at times. It was something that broke the smile out of me.
When it came time to leave I felt refreshed, and ready to conquer the world. If only those feelings last forever. It was worth the trip and if you ever get the chance to participate in the Annual Conference, do it. I wish I was still there.
Even if only one life is changed because of this group, it's worth it. I know way more than one life is changed because of the group, especially mine. I couldn't make it without the girls. They are all such beautiful people, inside and out. So if you have a friend diagnosed with breast cancer at a young age, send her our way. If needed you can contact me but I do have a link in the blog. SURVIVINGDAT!
shannon xoxo
Thursday, July 30, 2015
Sunday, July 26, 2015
LBBC ANNUAL FALL CONFERENCE
Breast Cancer Today:
Individual Treatments, Shared Experiences
Friday, Sept 18 - Sunday, Sept 20
Denver Marriott City Center, Denver CO
Presented by LIVING BEYOND BREAST CANCER
Conferences are a great way to learn about new forms of treatment, support both emotionally and spiritually, meet other survivors just like you, and learn some different ways of dealing with symptoms. I have never attended a conference and then regretted it after the fact. This specific conference is dealing with three different tracks; Triple Negative Breast Cancer, Hormone Receptor Positive or HER2+, and Metastatic Breast Cancer With many different keynote and plenary speakers and a full three days of activities it should be a great time. Let me know if you go! I want to hear all about it!
Tuesday, June 30, 2015
If only
This is something I haven't written about on here yet. I've written drafts on my computer that never get posted. I always felt it was something only I dealt with, something only I felt, and something only I dwelled on at times. Today I decided that was all bullshit.
Have any of you ever thought about the "if only"? The if only I had noticed I suddenly started needing more sleep, and started napping ever chance I got. If only I didn't think that little thing I felt was nothing but a blocked milk duct, even though you stopped breast feeding a year ago; you had read about it happening, probably in some magazine or online, somewhere. Plus, young women didn't get breast cancer. You knew that because you read the risk factors, and it clearly stated that older women got the disease. You checked off all the risk factors and there was no way you had breast cancer, so you ignored it. These are just a couple on my "if only" list.
They come to me at the most random moments. Just tonight, after I showered, was getting ready for bed and was in the middle of brushing my teeth. While brushing my teeth an "if only" struck. Why? It's been ten years. Really 9 years 11 months. June 23rd or something like that is my official ten year anniversary. It blows my mind that after ten years with cancer, and chemo's, and radiation treatments, clinical trial after clinical trial, PET/CT scans like crazy, almost as much as ultrasounds, and a new set of boobs later "if only" still pops into my head.
We are constantly told, it's not your fault. There's nothing you could have done to prevent the cancer. For breast cancer, they really just don't know. You were young, healthy, at your prime, and BOOM!, it all blows away. So why do the thoughts of "if only roll around in our heads at random, messing with our minds. I know I can't be the only one who has this problem. Why won't our brains just let us heal? Why won't our brains just let us be happy and live life without the invading thoughts of "if only"?
I have more "if only" thoughts than I have medicines I take, and believe me, that's a lot. It's really just a list of "if only" thoughts that haunt me. I believe I have thought of all the "if only's" and they are on shuffle. There is nothing I can do about it now, so why do they still plague me?
Maybe it was the three months of your life that you were on birth control. That is actually written in my chart, saying the fact that I took birth control for those three months, it is actually a factor for my getting breast cancer. Three months. It's just one of those things they have to ask, just like "do you have any family history of breast or ovarian cancer?". So, in my chart it credits birth control. But from my all of my doctor's point of view, it's a mystery.
It's a subject that bounces into my head at the oddest moments. What about you? Do you think about the "if only's" or are you fully grounded and able to block those thoughts out? We are all different and deal with everything different. I just wonder if I am the only one who thinks this stuff sometimes. I know my "if only's" aren't the same as yours but it's good to know I'm not the only one out there.
xo
Shannon
Have any of you ever thought about the "if only"? The if only I had noticed I suddenly started needing more sleep, and started napping ever chance I got. If only I didn't think that little thing I felt was nothing but a blocked milk duct, even though you stopped breast feeding a year ago; you had read about it happening, probably in some magazine or online, somewhere. Plus, young women didn't get breast cancer. You knew that because you read the risk factors, and it clearly stated that older women got the disease. You checked off all the risk factors and there was no way you had breast cancer, so you ignored it. These are just a couple on my "if only" list.
They come to me at the most random moments. Just tonight, after I showered, was getting ready for bed and was in the middle of brushing my teeth. While brushing my teeth an "if only" struck. Why? It's been ten years. Really 9 years 11 months. June 23rd or something like that is my official ten year anniversary. It blows my mind that after ten years with cancer, and chemo's, and radiation treatments, clinical trial after clinical trial, PET/CT scans like crazy, almost as much as ultrasounds, and a new set of boobs later "if only" still pops into my head.
We are constantly told, it's not your fault. There's nothing you could have done to prevent the cancer. For breast cancer, they really just don't know. You were young, healthy, at your prime, and BOOM!, it all blows away. So why do the thoughts of "if only roll around in our heads at random, messing with our minds. I know I can't be the only one who has this problem. Why won't our brains just let us heal? Why won't our brains just let us be happy and live life without the invading thoughts of "if only"?
I have more "if only" thoughts than I have medicines I take, and believe me, that's a lot. It's really just a list of "if only" thoughts that haunt me. I believe I have thought of all the "if only's" and they are on shuffle. There is nothing I can do about it now, so why do they still plague me?
Maybe it was the three months of your life that you were on birth control. That is actually written in my chart, saying the fact that I took birth control for those three months, it is actually a factor for my getting breast cancer. Three months. It's just one of those things they have to ask, just like "do you have any family history of breast or ovarian cancer?". So, in my chart it credits birth control. But from my all of my doctor's point of view, it's a mystery.
It's a subject that bounces into my head at the oddest moments. What about you? Do you think about the "if only's" or are you fully grounded and able to block those thoughts out? We are all different and deal with everything different. I just wonder if I am the only one who thinks this stuff sometimes. I know my "if only's" aren't the same as yours but it's good to know I'm not the only one out there.
xo
Shannon
Wednesday, May 6, 2015
i still fall down
This past Tuesday was my test results day/chemo day. After ten years of chemo and tests I had become immune to the anxiety that happens with test results day. This time was different.
I woke up and immediately was down. I got dressed, got ready, my mom came to pick me up, all normal stuff, and on our way we went. On the way to the doctor's office I sat numb. I didn't speak, I couldn't speak. Tears continuously flowed out of my right eye. I couldn't stop it.
My head was going in circles. My thoughts were of my throwing a tantrum in my oncologists office, I'm not sure what about. Maybe it was because I was just sick of all of the nonsense. Tests after tests, treatments after treatments, crazy news after crazy news. In my mind I tell myself how lucky I am to still be here. I honestly know I am lucky. I have been able to watch my daughter grow and flourish into a young woman. She is now fourteen and in high school, finishing her freshmen year.
I still have those thoughts though. The negative thoughts. The ones that send me to my oncologists office in my head, trying to imagine talking to her, but only tears come out. Without knowing why those tears are flowing. It's a mind game. One I normally have control over, and not having control of it scared me.
Fortunately I am close with the girls in the lab and they cheered me up without knowing what they were doing. They didn't see the turmoil underneath the made up face and smile. It was just another day. I have to have my blood taken out of my foot and I'm a hard stick so it's always an ordeal. A painful, hilarious ordeal. While one tries to stick me, others try to sidetrack me and this day was just more ridiculous than normal. I left there laughing and back to myself.
Just like that it was gone. The memory of it is still there. The desperation I felt, the lack of control, the fear of the unknown. It reminded me of the first time I was diagnosed or those feelings of helplessness. It scared me because I thought I was past those days. The realization that I'm not kind of sucked.
I received good news though. My cancer is of rare form and most of it only shows up on the ultrasound. We normally do a PET/CT but because of my diabetes problem (for those years on steroids, thank you cancer) that had just reared it's ugly head I was not able to take the PET scan. Also, because I am allergic to the iodine contrast for the CT scan I have to have a CT scan that doesn't really show everything but it showed enough.
I have a few areas of growth but not enough to justify changing treatments. Apparently there has to be a 25% growth to decide the treatment isn't working. Some areas stayed stable, which is always good news, so all in all, good results. I am tolerating the treatment well enough to stay on it so no change in my treatment plans. Great news!
I left the doctors office renewed. The darkness still in the back of my mind, but really far back. My mom and I did our routine of lunch after treatment and we hit up Copeland's Cheesecake Bistro. A perfect ending to the day.
xo
Shannon
I woke up and immediately was down. I got dressed, got ready, my mom came to pick me up, all normal stuff, and on our way we went. On the way to the doctor's office I sat numb. I didn't speak, I couldn't speak. Tears continuously flowed out of my right eye. I couldn't stop it.
My head was going in circles. My thoughts were of my throwing a tantrum in my oncologists office, I'm not sure what about. Maybe it was because I was just sick of all of the nonsense. Tests after tests, treatments after treatments, crazy news after crazy news. In my mind I tell myself how lucky I am to still be here. I honestly know I am lucky. I have been able to watch my daughter grow and flourish into a young woman. She is now fourteen and in high school, finishing her freshmen year.
I still have those thoughts though. The negative thoughts. The ones that send me to my oncologists office in my head, trying to imagine talking to her, but only tears come out. Without knowing why those tears are flowing. It's a mind game. One I normally have control over, and not having control of it scared me.
Fortunately I am close with the girls in the lab and they cheered me up without knowing what they were doing. They didn't see the turmoil underneath the made up face and smile. It was just another day. I have to have my blood taken out of my foot and I'm a hard stick so it's always an ordeal. A painful, hilarious ordeal. While one tries to stick me, others try to sidetrack me and this day was just more ridiculous than normal. I left there laughing and back to myself.
Just like that it was gone. The memory of it is still there. The desperation I felt, the lack of control, the fear of the unknown. It reminded me of the first time I was diagnosed or those feelings of helplessness. It scared me because I thought I was past those days. The realization that I'm not kind of sucked.
I received good news though. My cancer is of rare form and most of it only shows up on the ultrasound. We normally do a PET/CT but because of my diabetes problem (for those years on steroids, thank you cancer) that had just reared it's ugly head I was not able to take the PET scan. Also, because I am allergic to the iodine contrast for the CT scan I have to have a CT scan that doesn't really show everything but it showed enough.
I have a few areas of growth but not enough to justify changing treatments. Apparently there has to be a 25% growth to decide the treatment isn't working. Some areas stayed stable, which is always good news, so all in all, good results. I am tolerating the treatment well enough to stay on it so no change in my treatment plans. Great news!
I left the doctors office renewed. The darkness still in the back of my mind, but really far back. My mom and I did our routine of lunch after treatment and we hit up Copeland's Cheesecake Bistro. A perfect ending to the day.
xo
Shannon
I wanted to be open and candid about my feelings. A lot of times I wear a mask of being uncrushable but I had to release all of this. Maybe some of you will relate, maybe it will help someone out there.
Wednesday, April 22, 2015
Good Wishes, A Hug for Your Head
Today I want to talk about a sweet organization that I discovered. They are called Good Wishes (A hug for your head, cute right!). As I was going through my mountain of papers I came across this little pink piece of paper that looked so cute, so I looked them up.
What they do is provide a scarf to anyone with hair loss or thinning hair due to illness or treatment at no cost. They want to share good wishes (about link) to those on there way to recovery. It all started when Laurie Erikson, who was the owner of a hair accessories business was approached by a customer, who requested something for her balding head. Laurie used some of her finest cotton and silk fabric to make a scarf for the customer. The staff signed the card and so Good Wishes was born. Good news is they have a children's line as well!
In the last nine years Good Wishes has sent over 39,000 scarves to those requested. What I found simply fantastic is they takes every name, city, date sent, and scarf number on a place card and these are taped everywhere in the office, as a reminder of what they are doing this for, to help those on their journey, and send them additional good wishes.
What they do is provide a scarf to anyone with hair loss or thinning hair due to illness or treatment at no cost. They want to share good wishes (about link) to those on there way to recovery. It all started when Laurie Erikson, who was the owner of a hair accessories business was approached by a customer, who requested something for her balding head. Laurie used some of her finest cotton and silk fabric to make a scarf for the customer. The staff signed the card and so Good Wishes was born. Good news is they have a children's line as well!
In the last nine years Good Wishes has sent over 39,000 scarves to those requested. What I found simply fantastic is they takes every name, city, date sent, and scarf number on a place card and these are taped everywhere in the office, as a reminder of what they are doing this for, to help those on their journey, and send them additional good wishes.
| On their site is a resources tab that list many other organizations. |
 |
| A pic of their office! |
photos courtesy of: www.goodwishesscarves.org
xo and good wishes to all of you,
Shannon
Sunday, April 5, 2015
JenniferFromTheBlog
Today we have a guest blogger. JenniferFromTheBlog. I met JenniferFromTheBlog through a mutual friend when she was first diagnosed with Breast Cancer, through Facebook. She didn't live in the same state I did, but we kept up with each other the way you do on Facebook. We finally met one day when we happened to bump into one another , while we were both at an appointment at MD Anderson Cancer Center in Houston. This was completely unexpected, definitely God had a part in us meeting. Jennifer says, " I just turned around, and there you were." She even checked Facebook to be sure it was me. This lady is an amazing woman and you will love hearing from her.
Shannon
Hello everyone, this is JenniferFromTheBlog here. Ya know, if someone would have asked me me 5 years ago, if I thought I'd be here writing about my experiences with Breast Cancer, I would've thought you were crazy. Of course not, that would never happen to me. I do my monthly Breast exams, I eat right, I exercise when I can, no never. But, here I am, 5 years a later, writing about how Breast cancer has effected me, my children, and even my family and friends.
For privacy reasons I will not disclose my children's names. I am a divorced, single mother of two girls. They were 10 and 7 when I was diagnosed with Breast cancer. I don't ever think I will forget that day. I went for a mammogram because I had found a lump. Actually, I had found this lump nearly a year before this mammogram, but my family doctor told me, "Oh....it's nothing to worry about, it sometimes just happens. Probably just fat necrosis." Okay, I was 30 at the time, what did I know. This was my doctor. I went with it. Well, as months passed by, I noticed changes. Enough changes in 10 months, that I scheduled an appointment with a wonderful OB. He jumped all over it. He requested every test he could, it was scary. But nothing, could prepare me for those words.
I remember that morning so clearly. I took my kids to school and I drove to that appointment, I went alone. Didn't think I'd need anyone, it was just a few tests. Well, after just one ultrasound, the Radiologist came in. She says to me, " Ma'am, normally we would ask you to return a week later for a biopsy, but we need to perform these tests immediately. We are quite certain, ma'am, we found 7 masses in your left Breast". Talk about can't breath. I said nothing, a tear rolled down my face. "Ma'am she says, would you like me to call someone?" I couldn't talk. I couldn't stand. All I could see were my daughters graduating high school, getting married, having babies, was I going to be there. What was I going to tell them. I'm all they have.
After a call to a friend, I settled down. We did biopsies. I was diagnosed with Invasive lobular and invasive ductal carcinoma. I had two aggressive forms of Breast cancer in one breast! Go big or go home, right? Yeah. That had to be the longest drive home, I had ever had in my entire life. I call this, the day my life stood still. It truly was, that day.
I hope you haven enjoyed my first entry. I want you to understand me. So, I will start from the beginning, so you know where I am coming from. Feel free to ask me any question in. You comments. I look forward to hearing from you.
Thank you for reading,
JenniferFromTheBlog
Shannon
Hello everyone, this is JenniferFromTheBlog here. Ya know, if someone would have asked me me 5 years ago, if I thought I'd be here writing about my experiences with Breast Cancer, I would've thought you were crazy. Of course not, that would never happen to me. I do my monthly Breast exams, I eat right, I exercise when I can, no never. But, here I am, 5 years a later, writing about how Breast cancer has effected me, my children, and even my family and friends.
For privacy reasons I will not disclose my children's names. I am a divorced, single mother of two girls. They were 10 and 7 when I was diagnosed with Breast cancer. I don't ever think I will forget that day. I went for a mammogram because I had found a lump. Actually, I had found this lump nearly a year before this mammogram, but my family doctor told me, "Oh....it's nothing to worry about, it sometimes just happens. Probably just fat necrosis." Okay, I was 30 at the time, what did I know. This was my doctor. I went with it. Well, as months passed by, I noticed changes. Enough changes in 10 months, that I scheduled an appointment with a wonderful OB. He jumped all over it. He requested every test he could, it was scary. But nothing, could prepare me for those words.
I remember that morning so clearly. I took my kids to school and I drove to that appointment, I went alone. Didn't think I'd need anyone, it was just a few tests. Well, after just one ultrasound, the Radiologist came in. She says to me, " Ma'am, normally we would ask you to return a week later for a biopsy, but we need to perform these tests immediately. We are quite certain, ma'am, we found 7 masses in your left Breast". Talk about can't breath. I said nothing, a tear rolled down my face. "Ma'am she says, would you like me to call someone?" I couldn't talk. I couldn't stand. All I could see were my daughters graduating high school, getting married, having babies, was I going to be there. What was I going to tell them. I'm all they have.
After a call to a friend, I settled down. We did biopsies. I was diagnosed with Invasive lobular and invasive ductal carcinoma. I had two aggressive forms of Breast cancer in one breast! Go big or go home, right? Yeah. That had to be the longest drive home, I had ever had in my entire life. I call this, the day my life stood still. It truly was, that day.
I hope you haven enjoyed my first entry. I want you to understand me. So, I will start from the beginning, so you know where I am coming from. Feel free to ask me any question in. You comments. I look forward to hearing from you.
Thank you for reading,
JenniferFromTheBlog
Wednesday, April 1, 2015
Diane O'Connor Thompson Breast Center
I am so happy I decided to do this. Now, instead of focusing on what I can't do I am focusing on what I can do. I'm not getting to watch as much Netflix or Hulu but I think it's worth it. I keep finding more resources and it's like, OMG! A lot I don't qualify for because I'm "too old" now or I'm still in treatment and they are for the "out of treatment" people, but they are resources for others.
I'm excited to announce that I have three guest bloggers lined up already. Ladies that I have met through this experience that, I believe, will bring different perspectives, information, and heart to this blog. Always keep checking back, I am adding more information daily.
For those who are looking for specific help you don't find on here right now, feel free to email us at pinkprincessesblog@gmail.com with any questions you may have, information you need, or maybe you want to be a guest blogger. We check email frequently and will do our best to find what you need.
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Now for some great information I came across. The University of Colorado Cancer Center's Young Women's Breast Cancer Translational Program. I briefly touch on this resource under my resource section but I was looking at their Spring 2015 Newsletter. In this edition there are some great information I wanted to tell you about. All this information is taken directly from their Spring 2015 Edition.
I'm excited to announce that I have three guest bloggers lined up already. Ladies that I have met through this experience that, I believe, will bring different perspectives, information, and heart to this blog. Always keep checking back, I am adding more information daily.
For those who are looking for specific help you don't find on here right now, feel free to email us at pinkprincessesblog@gmail.com with any questions you may have, information you need, or maybe you want to be a guest blogger. We check email frequently and will do our best to find what you need.
--------------------------------------------------------------------------------------------------------------------------
Now for some great information I came across. The University of Colorado Cancer Center's Young Women's Breast Cancer Translational Program. I briefly touch on this resource under my resource section but I was looking at their Spring 2015 Newsletter. In this edition there are some great information I wanted to tell you about. All this information is taken directly from their Spring 2015 Edition.
- They have a special interest in raising awareness and treatment of Pregnancy Associated Breast Cancer, which can be diagnosed even up to 5 years after a childbirth (I find this information very useful because I fall into that category as I know a lot of other's are as well)
- At the University Colorado Cancer Center they are working on vaccine trials. New immunotherapies seek to block cancer's actions. These vaccines also teach the body to recognize and attack cancer cells. As a benefit of the targeted treatment, they have fewer side effects than traditional treatments (i.e. chemotherapy, radiation)
- There are many types of research, from treatment trials to surveys to exercise trials to even donating a part of your cancer. Even if you are up to 10 years from your original diagnosis you are still eligible for some trials. Currently over 20 treatment trials are open, including special trials for BRCA+ or HER2+ patients. You can even just donate part of your tumor biopsy for one trial. Contact them for more info!
- A recent study includes examining breast changes in women after pregnancy and breast feeding. Young women who recently gave birth and have not been diagnosed with cancer have volunteered to join this study to help them learn more about young women's breast cancer; and in particular, pregnancy associated breast cancer that can occur up to 5 years after the last child birth. The study remains open! Contact today if you are interested in participating and tell your friends who have recently given birth!
Contact them today to learn more about Research or Clinical Trials!
twitter: @youngwomenbc
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All information is taken from the
Diane O'Connor Thompson Breast Center
Breast Cancer Services
pamphlet (received from the YSC Summit 2015)
For an appointment call: (720) 848-1030
More about the CU Cancer Center at University of Colorado Hospital. Each patient has clinical teams assembled specifically for each type of cancer-and they bring the specialists to you, often at one location and in one visit. (I'm not sure what the "bring the specialists to you" part means) As true subspecialists, their team treats the most common and rarest types of breast cancer (something I am so interested in because mine is a rare 2% of all breast cancer's).
The care is comprehensive, and depending on your situation, your Breast Center care program will include a combination of their team members.
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I hope there is some information here that helps someone. It was so important to me when I learned of all the specializing they did. The vaccine trials, how cool! I will be calling them soon, I will let you know how it goes!
xo,
Shannon
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