Tuesday, May 29, 2012

Because its Tuesday

Instead of preaching to you about IBC or attempting to write something brilliant and inspiring which typically ends in a giant fail I thought I would post a video. Yes its an IBC video. Its a documentary and its slightly humorous. Its kind of long so make sure you have time to sit and watch it. You will learn a lot I promise you.  If you look at the link and think its too long just start it anyway. I think if you do you will find that you enjoy it.

Wednesday, May 23, 2012

Divine Divas

The last few posts of mine have been a little on the heavy side. It’s not my intention for this blog to be sad all the time but it is about dancing in the rain and the world of cancer is a giant rain storm. Today though I want to share one of the rainbows that come with cancer. Friendship. Earlier this week I had the opportunity to meet two fabulous and very strong Christian women who happened to both be survivors of breast cancer. Neither was from here and we never would have known each other had it not been for a common friend. Our lives were each woven in friendship with her over many years and perhaps that very purpose was to bring us all together.

As we sat around the table sharing our intros and breast cancer stories we also shared a lot of laughter and tears. These women were a hoot! It was so encouraging to be sitting with a 9 year survivor and a 15 year survivor. I started to write this blog Monday after we met but I had not yet found the words to describe just what a blessing these women were to me even though we had just met. Today I still haven't found the words but it’s all I have thought about. You see the 15 year survivor was recently diagnosed with a recurrence. It’s every survivor’s worst nightmare. She is a strong and amazing woman though and she has risen above the cancer and taken it head on. It’s hard to believe she is even old enough to be a 15 year survivor. Tomorrow morning she is scheduled to have a bilateral mastectomy. Much of my day has been spent in prayer and I know that there have been a multitude of other people lifting her up in prayer as well. Tomorrow I will again be praying as will many others and I ask that if you read this you pray for my new friend as well as her family.

Its women like Tammy and Letha that make me feel so honored to be a part of this exclusive club. I'm forever grateful to my friend Lydia for bringing us together. While I hope she never becomes a member of the "pink sisterhood" I'm happy to have her as one of the Divine Divas in my life. I can't wait to spend more time with my new friends. Perhaps there will be a road trip for Lydia and I in the near future. If that’s the case than you know an adventure is just around the corner.
9 Two people are better than one,
       because they get more done by working together.
 10 If one falls down,
       the other can help her up.
    But it is bad for the person who is alone and falls,
       because no one is there to help.
Ecclesiastes 4:9-10 NCV

Tuesday, May 22, 2012

This is Why We Do It

I know that people who know me get tired of hearing about Inflammatory Breast Cancer. I know they are tired of hearing me talk about research and awareness and how important they are. I know people are sick of me nagging to make sure they have been to see their doctor and they have a yearly mammogram if they are "of that age". I realize that people are sick of me saying that if you notice any abnormal changes in your breasts to go see a doctor. Unfortunately there are many in the medical community who just don't know about IBC so even seeing a doctor sometimes isn't good enough. This time you don't have to hear it from me you can hear it from a young bride named Casey. If you following my blog your probably a friend of mine because I'm pretty sure that no one else reads this and that's ok. Please as a friend of mine do me a favor and follow this link and read the story. Its a story of a young bride who's only symptom was that her wedding dress didn't fit right. She was 29, only a year older than I was when I was diagnosed. I was a lot luckier than she was by catching it only in stage 3 and I give credit to my outstanding medical team. I know we say that IBC is rare and it is the most rare form of breast cancer but its a lot more common than you would think. Please read her story. Thank you Casey for sharing your story with the world.

Thursday, May 17, 2012

Two Steps Forward and Three Steps Back

...or at least that's how it feels in the world of IBC some days.

Two steps forward....Just last night message boards and facebook pages were filling up with news of a new study done by MD Anderson (who else right?). Its a vaccine in phase II of clinical trials. While this vaccine isn't for IBC specifically its a huge leap in the right direction. Its for women who are now NED and were Her2 positive. Phase two ends this summer and phase three should start soon. This is so exciting! This is a vaccine to prevent recurrence. Who would have ever thought we would be this close to vaccine for breast cancer? I believe with all my heart that in my children's lifetime if not in my own we will also see a preventative vaccine. Today more info flooded the cyber world with more complete information about this vaccine.Two steps forward.

Three steps back...unfortunately the same message boards and facebook pages were also filled with news of another IBC sister who lost her battle. Katherine Shear was only 46. While I didn't know her or really even know of her it still saddens me. Each time we loose one of our own it reminds us of just how terrible this cancer really is. It also reminds us though how important awareness and research are.

Two steps forward....April 30th was another day of joy and celebration as The IBC Network funded their first clinical trial (I'll let you guess where lol). It was awesome to hear that this organization has reached a point where they can now donate money and fund studies that will help us all raise awareness and find new treatments for IBCers. The women behind this organization (Terry Arnold) is amazing. As a survivor of IBC She will not sit by and allow the world to continue to ignore this disease any longer. I'm so amazed by the work that she is doing. This just shows how a little hard work and dedication by a few people can change the world as we know it. I can't wait to see what The IBC Network will do next.

Three steps back...that same day IBC lost another great women. Cynthia Harrington age 48 and then the following day Debora Robertson age 50. I have heard wonderful things about these ladies and my celebration was again cut short by this news. We are not even half way through the year and we have already lost soo many including some of the major IBC bloggers. In February the world lost another amazing women and advocate Susan Niebur. I followed her blog closely. I even corresponded with her a couple of times. When I read her last blog entry which was written by her husband saying that she was no longer with us I fell a part. I couldn't even sit down and write about that one until now. I still visit her blog and read old entries. She was such an inspiration to me during treatment. She taught us not only how to live but how to die gracefully. These women and the ones that have gone before them are my heroes.

You may wonder why I'm blogging about this and why now. Why bring up the ugly fact that so many die from this. Why focus on something sad like death. Well partly because I'm sick of celebrations of advancements in medicine being cut short by loosing some of the very advocates that have helped get us to this point. I'm tired of seeing another sister taken by this cancer. I'm tired of hearing that its rare when there really are so many of us. I'm tired of people assuming that its just breast cancer and hardly anyone dies from breast cancer these days. I'm tired! So why name some of the women that we have lost even those I really didn't know? Because they are not just statistics, they are not just a number, they are women, mothers, sisters, wives, daughters, friends.

But of course I won't leave it at that. I have decided to keep a list of every name of every IBC sister that we have lost this year weather I knew them or not. While I'm saddened by the loss of them I will celebrate them! I will celebrate their life and their fight and I will continue this year after year. How will I celebrate and honor them? I'll save that for another time and another blog.........

Monday, May 14, 2012

Its the Little Things in Life

It was hard to come into work this morning. Not because I hate my new job. In fact I really like it and I grow to like it more and more each day. But this morning I wanted to stay home. I wanted my weekend to continue just a little longer. It was mothers day weekend and it couldn’t have been more special. Its been over a year and half since I was diagnosed with IBC. I know your wondering how in the world I can make mothers day about cancer. Well in the weeks leading up to my diagnosis and the many weeks that followed I realized we didn’t have a single family photo on the wall. I don’t mean that we didn’t have a recent one of all five of us. I mean we didn’t have a single one of Shawn and I with any of our children.  I have tons of the girls now but still none of us with our kids. I realized back then that life was too short and we needed to take more photos of our family. I can’t believe I let all of this time pass and still not have a family photo taken. We have talked about it often but something always got in the way of us actually doing it. Last year I remember wondering if I didn’t beat the cancer if my girls would remember our family the way it is. Would they remember me? It broke my heart knowing that I might leave them behind without a single family picture. Somehow we have managed to go almost another two years without a family photo. I realized this again recently. I have been determined to live life to its fullest and yet still haven’t stopped to take the time and do a family picture. Its time for that to change. I want the wall of our house to be full of pictures of our family. 

 I love taking photos of people and for people. I love helping them capture memories of their family that will last forever and that’s what I wanted for mothers day. Our own family pictures. One that we could have printed and hang on our wall. I wanted something that would capture our family and our personalities. Years from now I want our children to be able to look back and remember how much fun we have. I want them to remember how close we all are. So armed with my camera, a tripod and a remote we set out to capture our family photo. It was a beautiful sunny day which happens to be the worst conditions to try and take a picture in but it was mothers day weekend and I knew this was my one and maybe only chance to get the family to cooperate. I was determined to make it work despite the bright conditions. It was also graduation weekend for MU which meant we had to find a new spot to do pictures. Everyone would be taking graduation pictures at the parks in town. There was a lot of complaining and whining and the girls were difficult too. In the end the family cooperated.  I will say that its much more difficult to do your own family pictures but I’m happy with it. At first I was frustrated that they weren’t perfect and then I remembered that’s part of the joy of our family. We aren’t perfect, we are each unique. Some of us are easily distracted and can’t seem to focus on looking in the direction of the camera, some of us like to play with our toes, some of us like to get really posey but when it comes down to it the whole family just likes to have fun. Its when I let go of the idea that they had to be perfect that our pictures came to life. I’m grateful to my family for making this little dream come true.The following are some of the pictures. This wasn't the only thing I got for mothers day but it was the best!