I Hate Pink Ribbons

I hate pink ribbons....

As I sit here at my screen, I am looking at a jar of hand cream.

It is an unassuming jar - nothing really that special about the cream itself. It's not imported or infused with oils, scents, or the latest antioxidants.  But still this jar of hand cream is catching me, and weighing heavy on my heart.  I don't move it because it is a connection I have to my sister.




I hate pink ribbons....

This jar of hand cream is the jar that my sister used during her battle with inflammatory breast cancer.  Her chemo and treatment were so harsh on her skin, that she had to bath her burning, itching, peeling skin during her 4 year and 9 month long life and death battle with a bitch, a demon, a monster of a disease.

I hate pink ribbons... 

As a family with a history of breast cancer, we were MORE than AWARE of breast cancer.  My sisters and I have had regular mammograms, done self-exams, and had clinical exams.  Some of us had them earlier than the "recommended" age. We looked for the symptoms that the happy, pinkified campaigns suggested. We always looked for the lump. We were aware. And we didn't know what we didn't know.

I hate pink ribbons...

Still, my sister had symptoms of breast cancer for months and didn't know.  She was diagnosed at stage IV of inflammatory breast cancer.  SHE HAD NO LUMP.  She had what she thought was a rash. She had some swelling that she attributed to being lopsided.  She had a dimply - orange peel like texture to her breast that she thought had to do with hormones or the rash.

I hate pink ribbons. 

None of what we were aware of ever told us to stop and take a good LOOK at our breasts. We weren't aware of the symptoms of inflammatory breast cancer. With as many pink ribbons as we saw, as many lumps we looked for, as "aware" as we were as a family, none of us knew about this type of breast cancer and these symptoms. We learned pretty damn quickly that this type of breast cancer leaves women with only a 35-40% 5 year survival prognosis. My sister died 4 years and 9 months after her diagnosis. We learned that it is a less common type of cancer but a very aggressive cancer that is diagnosed at a younger average age than other types of breast cancer. We learned very quickly that it often does not manifest in the form of a lump. We learned that there are visual changes that can accompany IBC, that we were not aware of. (For more information about IBC - inflammatory breast cancer visit The IBC Network, and see the sister check graphic above for possible visual cues. )

I hate pink ribbons...

So why do I hate pink ribbons? I hate them because they do not tell the whole story.  The pink ribbon has become the symbol of the "cause of awareness".  I hear slogans of "support awareness"- just what the hell does that mean? At this point in history, if you are not aware that there is something called breast cancer you have lived your life under a rock.  I hear of parents fighting for their kids right to wear a band with the word "boobies" on it as a matter of their right to free speech and belief.  I see retailers and businesses pushing pink in "support", but fail to mention if any of your purchase supports anything.  I see the pink ribbon associated with community, and happiness, and fun - which is not a bad thing, but that was not the ending of the story for my sister and our family.

I hate the pink ribbons because to me, they trivialize my sister's death.  To me, they don't support research, education, action, prevention, access to support for patients and families that are in the trenches of the war with cancer.  The pink ribbon doesn't show what families that have lost loved ones have gone through.  They don't show the grieving, the heartache, the life change that happens when a woman or a man dies as a result of breast cancer. I hate the pink ribbons because they leave out the what you don't want to hear about cancer. They are a symbol for awareness. We could have all the awareness in the world. But without action, education, research, support for patients and family, it means absolutely nothing.

I hate pink ribbons because they show the pretty side of the pink movement - cancer is anything but pretty.

Is this an angry writing? Yes. My writings about this used to be hopeful as she truly fought the good fight. She won a lot of battles. But in the end - cancer won the battle for her breath. My anger comes from losing my sister. It comes from grieving.  It comes from wishing there was a better prognosis for women who are affected by IBC. It comes from feeling like we were on top of awareness, and we weren't.

To be clear, I am not saying that you should not engage in any campaigns. MANY organizations do good.  I am simply saying to be aware that there is more that is needed than just awareness. Please - educate yourself.  In today's information age, you have access to search and learn about breast cancer. There are so many good resources out there.  Don't rely solely on a campaign or an awareness month to understand YOUR health.  Be a good steward of your life. Take action and accountability where you can - learn what you can.

Let me revisit a statement a few lines back.  In the end, cancer won the battle for my sister's breath. BUT, it did not win the battle for her spirit and her soul.  She is singing praises in heaven with her Lord and Savior Jesus Christ, and that brings us peace. However, in our humanness, until we see her again, we will miss and grieve for her. No number of pink ribbons can change that.

As I sit here looking at this jar of hand cream, I think of my sister. And I think I HATE PINK RIBBONS.

Here's a challenge: Ask a business person who is pushing pink in support just how much they are donating toward a research cause, a patient support cause, a treatment cause, and education cause... if they are donating something, than great. If not, take what you would have spent on that item and donate it directly to an organization that supports beyond awareness. 

For Amy

This is not a typical post for AZ Mom of Many Hats.

But, Amy is not a typical person.  She is my sister. She is amazing.

I have posted about Amy several times before over the last five years.  The first post My Sister's Cancer being about finding out in February 2008 that she was diagnosed in Stage IV Inflammatory Breast Cancer - an invasive and very aggressive form of breast cancer that does not generally have a defined lump.  There were successive posts on her journey and battle - many of them that brought hope and some that brought angst. All of them were in honor or celebration of her - and for a kick in the ass to the bastard of cancer.

This post is no different.

Amy is larger than life.  From her colorful hair to her love of fancy rats, there is nothing about her that is not vibrant, interesting, and totally genuine.  Each person that knows her would describe her essence as strong, witty, straight forward, authentic, dedicated, compassionate, and even snarky.  As a woman with a teacher's heart, a deep and devoted faith, a compassionate heart for all of God's people and creatures, and a strong sense of right, her actions towards the world have influenced, touched, and nurtured her family, our larger family, friends, students, colleagues and even some she has never met.

She is a force to be reckoned with in this world - in a good way.  I say it again... She is amazing.

On November 12, 2012 the world forever changed.  After many valiantly fought battles, at the age of 45, Amy passed away of Inflammatory Breast Cancer (IBC). She fought through chemo and radiation and all of the possible side effects that come with both. She showed strength and grace as she pushed her tired body through the day to day as best as she could - volunteering, mentoring, running her rattery,  being mom, wife, daughter and sister, singing on the worship team at her church. She fought hard, she fought long, and she fought admirably.

My heart, our family's hearts are so heavy and our existence will never be the same.  We no longer have the physical presence of Amy as mom, wife, sister, daughter, aunt, cousin, friend.  We will forever miss her presence here and always long for more time with her. But, the force of Amy, her essence can't be defeated. In that we find some peace.

Through her fight, many were educated about Inflammatory Breast Cancer.  Her teacher's heart wasn't stilled by the battle.  

Through her fight, she showed strength and grace. Her spirit wasn't crushed by the battle. 

Through her fight, she showed tremendous love for others.  Her compassion wasn't soured by the battle.

Through her fight, she showed what it was let go of things out of her control.  Her will wasn't destroyed by the battle. 

Through her fight, she left the lessons, the words, the actions, and the seeds that her family needs to move forward and be strong and good men in the world.  Her loving, nurturing and mothering were strengthened ten-fold by the battle.

Through her fight, her identity never became Amy, the Inflammatory Breast Cancer patient.  She was always Amy, who happened to have this battle present in her life. 

Through her fight she remained rooted in her faith, even when she didn't understand why this battle was hers.  The battle didn't destroy her trust and faith in God and her Salvation.   

She could not win every battle. But she NEVER lost the war.  Today she is singing and enjoying the splendor of HIS courts.  She is in perfect peace and whole.  That is something that cancer could never take from her.

Don't Let the Silence Continue

Women, men, physicians - please learn about Inflammatory Breast Cancer - IBC.  There is so much progress in many areas of breast cancer research and treatment.  We hear about that all of the time in the "pink" campaigns. What we don't hear is the dark side of breast cancer - the types of breast cancer like IBC, and that MOST women diagnosed with a cancer like IBC will die. Whether it is unpopular, unwillingness, or unawareness, this conversation in the breast cancer dialog is rarely had.  The silence is killing women, and men.

We knew about breast cancer.  We didn't know about Inflammatory Breast Cancer.

Learn more about Inflammatory Breast Cancer at:

The IBC Network
http://www.TheIBCNetwork.org

MD Anderson Cancer Center
http://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/inflammatory-breast-cancer-research-program/index.html

The Reality Of Pink

I dedicate this note to my sweet sister Amy and my three cousins who have battled or are battling Breast Cancer. I also dedicate it to my two aunts in heaven who both battled this disease.

I am spurred to write this as a response to a blog post I saw posted by my sister that talked about how we are "pinked out". The article is a fantastic blog post written by one who is doing their part to raise funds for the prevention, cure, treatment and awareness of breast cancer. From the bottom of my heart, thank you for your efforts to that very special and dedicated person.

The "pink" movement has gotten a lot of attention. Just about anyone in the US who saw a pink ribbon would probably have some recognition with it in regards to breast cancer "awareness". It is a good thing that people know that breast cancer exists, and that they should get mammograms and do self checks. But simply being aware of it is not enough. Pink shouldn't just be seen as a pretty ribbon, a cute water bottle, or a trendy bracelet that has caused an uproar. Pink shouldn't just be limited to one month for people to be "aware" of breast cancer. Pink doesn't stand for something that happens to other people. It doesn't stand for a bonding experience you may have with another person on a fund raising walk. It doesn't stand for something that affects a certain sex.

The thinking needs to change. Pink should stand for reality. The reality that this could happen to you.

This is what pink should stand for. It should stand for the scars that women AND men carry on their bodies from surgeries to remove lumps, lymph nodes, and breasts. It should stand for the pink port-a-cath entry point where drugs are injected, that often themselves can have side effects. It should stand for the previously untouched by the sun skin on women and men who have lost or chosen to take control and get rid of the hair on their heads and the rest of their bodies. It should stand for the red, dry, cracked skin that may be a side effect of chemo for some. It should be for the radiation burns that can happen as a result of radiation therapy. It should be for the scars and the pain that the families, friends and loved ones have if they have lost someone to this disease. It should be for tired and hurting feet on the long road to treatment and recovery.

I get that people may read this note and think that I sound angry. I am. I am angry at cancer. But I am also angry at the watered down attitude that people have about this. I was one of those - until it happened to my sister, and three cousins -and untill there was a total of three out of five women in this generation on ONE side of my family with breast cancer.

Instead of a pink pretty ribbon, would a photo of a pink lumpectomy or mastectomy, a pink burn, a pink port, a pink scalp, a face pink from shedding tears, would those things get the attention and make people snap into reality? Instead of the recognition of pink as a breast cancer awareness marketing tool (and I use that in the sense of recognition) when will we snap into reality? Pink isn't a cutesie marketing and fundraising tool. Pink stands for WAKE UP PEOPLE! THIS COULD HAPPEN TO YOU!

Breast Cancer Hope - My Sister's Story

I wrote this three years ago this month, but needed to share it again. If you are a woman or a man, you MUST KNOW ABOUT INFLAMMATORY BREAST CANCER! The side bar shows a list of symptoms to look for. Google it, research it, know about it. Below are some links to assist you.


Please read the follow up on Amy's story at the end of this post.


My Sister's Story


Although this is written mostly from my perspective, I write this entry with the permission of my beautiful sister Amy who is a true warrior and survivor.


I remember the day last February that my sister called me.


I was sitting in my car in the parking lot at the community college where I was taking classes. My phone range, and on the other end of the line was my sister, barely able to speak. She was in tears after leaving her general practitioner's office and on her way to a breast surgeon. Her doctor had sent her from his office, directly to a specialist because of the urgency of his suspected diagnosis.


I went home and researched the symptoms she had that caused her doctor alarm and prayed that his suspicions were wrong. The information I found was scary, devastating, and grim. It said that, if her doctor was right, the statistics said that there was only about a 20% survival rate.


She called me that night and confirmed that her general practitioner's suspicions were right. She had inflammatory breast cancer.


The next several weeks were so difficult. There was a complete feeling of helplessness, fear, and hopelessness as we learned more about this type of cancer. As a family we were grieving.


But, soon after her treatment started, we saw that there was hope.


Amy began and aggressive course of chemotherapy. Within four months of treatment, her MRI and other scans showed that the cancer was slowing, retreating, and inactive. She had a radical mastectomy six months after her diagnosis and healed well. Additional scans and MRIs showed that her body was holding up well and responding to treatment. Her doctors are very happy with her progress.


Some of the hope comes from two drugs that are being used in the course of her treatment. The first is Zometa. This was originally used to strengthen bones, but according to Breastcancer.org, it has been shown to help prevent the spread of breast cancer tumors. The second drug is herceptin. Herceptin works by blocking receptors on cancer cells. By blocking the receptors, the cancer doesn't get growth signals, and therefore, stops growing. *


Another source of hope is that she has seen doctors that don't use a 'one size fits all' approach to treating her cancer. Her doctors have taken the time to understand who she is, what her cancer is, and how they can best treat her. Many of them specialize in only breast cancer treatment. From the cocktail of medications in her chemotherapy, to the surgical aspect of her treatment, to the physical and psychological aspects of her healing, her doctors see her as an individual, not a statistic.


There is hope in that there are many organizations dedicated detection, prevention and finding a cure for breast cancer. All over the country, groups gather to walk and run in support of breast cancer research. Corporations donate portions of sales of certain items to breast cancer research foundations. There is hope that each day research is done, is one day closer to a cure.


Although there is an incredible amount of hope in what can be done through people, the greatest hope is in the faith that she has, and that we have as a family. From the moment she was diagnosed, she has had an army of supporters around her. She is loved and prayed for on a daily basis by every one of them. As a family of faith, we believe in the power of prayer and are confident that she will find healing. We know that God is in control of every situation, especially this one.


That day in February started a long and dark night. But, as hope has set in, the sun is rising again, shining bright on my beautiful true warrior and survivor sister, Amy.




Update, Oct 2011. Amy is still fighting - a true warrior. Part of her treatment was a mod-rad mastectomy. She has undergone collectively 24 months of chemotherapy and a round of radiation. She is still in treatment and we still maintain hope in her full healing of Inflammatory Breast Cancer!


To read her full story, Please visit her site:


Amy's journey with IBC can be found at her website.
http://www.familyaffairratz.com/Amy_s_Battle_I.B.C.html


IBC Info:
http://www.mayoclinic.com/health/inflammatory-breast-cancer/DS00632
http://www.ibcresearch.org/


*Breastcancer.org
If you have a hope story, please be a blessing to someone who is in the battle. Reach out in an e-mail, phone call, or response to this post.


Next post: Cancer Blessings

A Big Pink Thank You!

Thank you to all who stopped by my blog in October and read about breast cancer and breast cancer awareness.

This month, I told you about my amazing sister Amy and her battle with Inflammatory Breast Cancer, IBC. I shared with you about some of her trials as well as her triumphs as she is walking the road that so many - too many have walked before her. I have shared with you ways that you can support the cause of breast cancer awareness by purchasing "pink" products. I have shared with you hope and blessings that have been found amongst the cancer mire.

I would like to finish off the month by reminding women to do their monthly self-exams. Know your breasts, what the feel like AND what they look like. Schedule your clinical exam with your doctor and let him or her know your concerns, your family history and any other information you feel is important to ensuring your breast health. Schedule your mammogram! Don't put it off because it isn't comfortable. They are not that bad. Besides, a little squeeze is worth finding any potential problems.

I will leave the cancer information links and the SISTER check posted on the sidebar as a permanent addition to this page. Feel free to come back and visit the links, and to utilize the SISTER check information.

Please feel free to leave any comments about how this month's entries affected you. Share your cancer story, a loved ones story, or a story of how cancer has touched you.

Thank you again for reading. I hope October's posts have been a blessing to you.

Stay tuned for more posts from AZ Mom of Many Hats!

Cancer Blessings

Cancer Blessings.....

At first glance, these two words don't fit together. They appear to be an oxymoron. How can cancer, something so horrible and devastating, be paired with such a lovely word as blessing? How can a word that brings on the feeling of mire and darkness sit next to a word of hope and light?

I would say that they do fit together. I know my sister Amy would.

Amy and I have been in almost daily contact since her diagnosis. Many of the days have been dark and scary. But even in midst of some of the worst days, Amy has always been able to speak of the things in her life that were good. She has never lost site of her blessings in the blinding storm of cancer.

The following are just a few of the many, many blessings she has.

Amy is able to stay home with her son. She hadn't had the opportunity to do that before as she was the major source of income and health insurance in her family. Cancer forced her to take time off of work. Because she has had this time, she is able to spend more time watching her soon to be teen aged son grow and become a wonderful young man.

She has always been blessed with a husband who has always been incredibly nurturing and supportive of her. A hidden strength in him has been revealed as she has watched him solely take on the role of provider and protector of their family. Through this trial, they have both had to take on new identities in their marriage, and as a result they have grown stronger and closer as a couple.

The many people she has met who are sharing the same battle as Amy, have also been a blessing to her. She is blessed to know that although others are there to support her, only those that have fought the fight can truly understand what she is going through. She has been able to be a support to them as well as receive support from them.

Amy has found the ability to rejoice with those that have good news, even when hers is bad. She has also learned to not feel guilty when she rejoices in her own good news even though those around her may not be doing as well.

She has learned just how much she is loved and by how many people. Old friends, relatives, new friends and mere acquaintances have shown her love that she didn't think she was worthy of (of course those of us who love her, know she is worthy of it.) She has had help with meals, transportation, house work and daily tasks by people who are committed to helping her through this battle. She has even had co-workers donate enough sick days for her to maintain her position as a teacher until January.

She has had a crash course in releasing things into God's control, and knowing that it is OK that she can't control everything or even anything. She has learn to let go.

She has learned to appreciate and see the beauty in the small stuff. When her son didn't wake up to his alarm and she had to drag him out of bed, she was grateful that she will have more time to drag him out of bed while the alarm is blaring. She enjoys her home and the pond in her backyard. She sees an amazing beauty in them that she didn't fully recognize before.

Seeing God in the "trenches" has been an incredible gift in this time. She has found strength and hope in knowing that no matter how deep the pit, she can never fall out of the reach of God.

This is just a list of a few of the blessings she has received.

Cancer Blessings.....I think those two words sit together in an awesome juxtaposition.


If you have Cancer Blessings, please be a blessing to someone else by sharing with an e-mail, a phone call, or a comment to this post.

Amy's IBC Journey

Amy's journey with IBC can be found at her website.
http://www.familyaffairratz.com/Amy_s_Battle_I.B.C.html

Go Pink!

If you have been anywhere this month, you have probably seen the barrage of pink everything, everywhere. The sudden invasion of the oh, so happy, oh so rosy, oh so PINK is a result of October being National Breast Cancer Awareness month.

Retailers are participating in cause related marketing - the cause being breast cancer awareness. According to *foundationcenter.org, cause related marketing is when a profitable company partners with a non-profit organization to promote their product as well as to benefit the non-profit.

I know that some may disagree with tugging at the heartstrings of the consumer in order to get them to buy a particular product. I know that some may say that it makes people "feel" like they are being charitable when they are really getting something in return. I know some may think that it is just plain corporate greed to try and increase sales by using the color pink.

Well let me go on the record as saying....I don't care! I don't care that people are making money - so is breast cancer research. I don't care if it tugs at the heartstrings - we could all stand to have our heartstrings tugged if it means we become more aware of breast cancer. I don't care about whether or not people are "giving" for the right reason - this can be mutually beneficial to the consumer, the corporation and the non-profit organization.

What I do care about is finding a cure for breast cancer. I care about my sister who has inflammatory breast cancer. I care about my cousin who was recently diagnosed with breast cancer. I care about my daughters, my mother, myself, my friends, and anyone who will in some way be touched by breast cancer- unfortunately that will probably be everyone.

So, go ahead. Give into the temptation to purchase the cereal with the pink ribbon. As you are starting your holiday shopping, mosey on over to the rosy hued end cap of pink water pitchers. That cute pink t-shirt, it's just calling your name. Go ahead. GO PINK!


P.S. Coming up next... I'll share some items available that will help you go pink.


*http://foundationcenter.org/getstarted/faqs/html/cause_marketing.html

My Sister's Cancer

I am writing this with the permission of my beautiful sister, Amy.

Several months ago, Amy noticed some changes in her breast. But, she didn't think much of it. Like many women her breasts had always been a little lopsided, so when that increased, it wasn't that concerning to her. She felt some fullness ans soreness, but she had breast fed her son when he was a baby, and the feeling felt similar to when it was time for him to nurse. Her breast looked rashy and was a little itchy, but she thought that maybe her skin was irritated from her laundry detergent.

Because of our family history, Amy had been diligent about doing self exams and had even had a clean mammogram the year prior. But when she went to her general practitioner in February 2008 for a bout of the flu, she had him look at it. That day, her doctor sent her directly to a breast surgeon and she got a diagnosis of inflammatory breast cancer - IBC. That day my sister, began the fight for and of her life.

IBC is an aggressive form of breast cancer that causes the appearance of inflammation in the breast. It is usually in a later stage at diagnosis. Amy was diagnosed in stage IV. Her cancer had already metastasized to her spine, ribs and hip bone when it was found.

Immediately after her diagnosis, she went on disability leave from her job as a teacher. She very rapidly began her treatment. She began with a six session round of chemotherapy - one week of chemo and three weeks off to recover from the chemo - until all six were completed. The chemo was rough. She lost her hair and battled depression. She went through a series of shots each week to either boost her immune system, suppress a particular protein in her body or strengthen her bones.

After her first round of chemotherapy, she had a radical mastectomy. The surgeon to took all of her breast tissue, some skin and tissue from under her arm, and seventeen lymph nodes. She underwent and is still undergoing some independent physical therapy exercise to keep her mobility and to help with some nerve damage caused by the procedure.

She is currently undergoing another round of chemotherapy. This time it is three weeks of chemotherapy and one week without. She is still taking the medications to strengthen her bones and immunity, as well as the medication to suppress the protein.

Through this battle, Amy has relied on her doctors, her family, her friends and her faith. She is showing great progress. All the tests and scans that she has taken so far show that she is responding well to her treatment. We don't necessarily understand every medical term that the doctors use, but we know for now that active cancer is not visible on the scans and that it has not spread any further.

As women, we need to know our bodies and be proactive and educate ourselves about issues such as inflammatory breast cancer -IBC. We need to look at credible sources on how to detect and protect ourselves from breast cancer, a disease that affects so many.

As I said before, Amy knew her family history. She knew to have mammograms. Amy knew to look for a lump when doing her self breast exams. But knowing that information wasn't enough. Her cancer was not in the form of a lump.

Posted on the side bar is the acronym SISTER that outlines some of the visible symptoms of IBC. Please feel free to use it as a reminder of not only knowing what your healthy breast feels like, but also what it looks like. Also posted are some links to websites to help you find more information about breast cancer.