Talking About Radiation...

I was asked to speak about my radiation experience.  I was delighted, the people at the clinic were so wonderful to me so I was happy to give back to the cancer center.  Here is the link to the article:

Valley View Medical Center-Radiation

Traveling After Breast Cancer...

There are things that become a little complicated after breast cancer.  One of these things is traveling.  If you are traveling for long distances in the car or flying in an airplane, you have to think about lymphedema prevention.  This includes drinking plenty of water, moving around when you can and wearing a compression sleeve.  Most people don't know or understand what lymphedema is.  I have to explain this to a lot of people.  Here is a medical definition:
   

What Is Lymphedema?

Lymphedema is an abnormal buildup of fluid that causes swelling, most often in the arms or legs. The condition develops when lymph vessels or lymph nodes are missing, impaired, damaged, or removed. The lymph nodes are part of the lymphatic system which helps fight off infection and clears debris from the body.

So, I just returned from a 30 hour trip (which consisted of driving and three flights).  I wore my sleeves and hand gauntlets.  I felt awkward but I did it anyway.  I don't want to end up with giant arms and fingers.  It is worth a few hours of strange looks and questions.  It is always about prevention.  Here is where I will put in my plug for my favorite lymphedema sleeves.  I love love love Lymphedivas.  They are stylish and fun.  I don't feel 80 years old when I wear them.  I am young and I like things to look pretty, even when they are for post breast cancer surgery items.  Check them out.   Lymphedivas

Desert Divas are Ready to Roll

We are heading out tomorrow for the experience of a lifetime.  It has only been 8 months in the making.  We are super excited.  Many of our friends and family are coming to cheer us on.  TOUR DE PINK, here we come!

Pinktober, Yes or No??

I am at odds with myself about Pinktober.  Do I like all of the pink ribbon merchandise everywhere around me?  Or do I want to throw up every time I see it?  Sometimes it just makes me mad because it is many companies getting rich off of the "Pink Ribbon" pop culture.  How much money do these companies really donate to support breast cancer treatments or research?  Cancer isn't beautiful like a pink ribbon.  It is red from all the blood we have shed, it is green from all of the vomit, it is purple from the scars left on our bodies, it is black from all of the sisters we have lost to the disease, it is blue from all of the tears given when we are scared for the future, it is white from the hospital gowns we have worn during the time we spend in hospitals.  I don't see pink anywhere except on the ribbons that remind me that cancer keeps coming and affecting the people I love.  You decide how you feel, I have yet to decide.  

Maybe You Don't Agree-Tamoxifen

    Well, I have debated whether to share this or not.  I guess this blog is like my journal so, why not??  I have decided not to take Tamoxifen anymore.  Why??? would I ever do that?  Well, there are so many reasons.  #1 (and it is a HUGE #1)  my tumor was less than 1% estrogen positive. I had the tumor tested twice and two different locations and it came back the same both times.   I am almost a triple negative.  That would be negative for estrogen, progesterone and her2.  I didn't have to take the herceptin chemotherapy, which is an extra round of chemo.  Most people who take Tamoxifen are like 40% or more positive for estrogen.
    I saw my doctor this week.  The conversation went like this, "How is the Tamoxifen going?" he says.  I waited for a few seconds and said, "Well, I am not going to be taking the Tamoxifen."  It had only been about 7 days since the last pill but it felt pretty dang good to take my own health into my hands. I felt like I was letting him down but I have to do what I think is best. Yes, it is scary.  It is CRAZY scary!!  What if this is the wrong choice??  What if in three months the cancer is back?  I will never know if it is the cancer or not taking the "PILL".  It seems like everyone around me (Pink sisters) take "the PILL".  We do it because the doctors tell us to.  Does it help?  My doctor said it was like wearing a seat belt, sure you may not have an accident but it is there just in case you do.
   Why would I want to make this decision?  My side effects-weight gain, anxiety, hot flashes (like a burning tube of lava in my body, hot flashes), lost my right ovary due to cyst growth, had to get a D&C because of uterine growth, and the possibility of uterine cancer in the future.  Plus, the doctors have now decided people need to take it for 10 years instead of 5 years.  Well, it has been about 2 weeks now and "the PILL" is still getting out of my system.  I am with great hope that my body will be returned to me.

Power in Pink 5K

So, I think I may need to be committed by the time October is said and done.  Not only am I training for this crazy bike race but I am planning the Power in Pink 5K/1 Mile Walk for Iron County on
  October 4, 2014.  It starts at the West Canyon Park and lasts for a few hours.  I just got the design back for the t-shirts.  I love it.  These women mean so much to me.  I love that everyone wants to help those in need.  We have such a huge need in this area.  I am so excited for these two things.  Can't wait!!  If you want to register for the event, it is on Active.com.

Many Memories Return

So, I got this picture last week.  Out of the blue our cousin sent it to me.  It was from her wedding.  I had just had chemo three days prior to this day.  As I looked at this picture, I started to cry.  This woman is me but it feels about a thousand miles removed from me.  Did I really go through this?  That is my baby.  He was just one year old-barely- when this picture was taken.  This is my infant that needed his mother as much as I needed mine.  I had wore my scarf to the wedding and tried to put on my happy face for the family.  I WAS SO SICK.  I remember taking three kinds of anti nausea pills so that I could face the world.  It was a kind of sick that I will never forget.  It wasn't like a stomach ache or morning sickness.  It was a chemical poison in my body.  I felt strange and weak.  This picture reminds me of all the sad glances I would receive from strangers.

I say all of these awful things but this picture also reminds me of how hard I fought to stay with my family.  I went to hell and back just to stay here on the earth a little longer.  This picture shows a mother taking care of her child no matter how weak she was.  He was my strength.  I wasn't going to leave him.  He loved me no matter how ugly I became or how different I looked from the medicine.  It wasn't about the outside appearances.  He loved me because I am his mom and nothing can change that.

Thank you for giving me this little piece of my past.  This picture was taken from an outsider looking in on me for just a moment.  It is a gift, it reminds me to slow down and hug the kids a little longer.

Join With Me

I would love to have YOU join my efforts for breast cancer awareness. I have pledged to ride 200 miles (in 3 days) with my team, the Desert Divas. We are raising $7,500.00 to donate to the Young Survival Coalition, a national non-profit for young women affected by breast cancer. Here is how the money raised is used:
$100.00 provides newly diagnosed kits to four women.
$250.00 trains a survivor to serve as a peer mentor for support for these young women.
$500.00 will fund an educational program for women to get their questions answered.
$1200.00 provides travel grants to two women to attend the C4YW, an annual national conference.

I have seen all of these programs used in my community. I have attended the national conference twice, the last time four women from Cedar City went with me. Your donation is FULLY TAX DEDUCTIBLE.

My team has raised $6,916.60. We are almost there!! Please help us. Any amount will help. Young women can and do get breast cancer. YSC means so much to me. I love these women and I love this program. THANK YOU!!

http://www.ysctourdepink.org/site/TR/TourdePink/TourdePink-WestCoast?team_id=6180&pg=team&fr_id=1401

2014 Tour de Pink West Coast: Desert Divas - Young Survival Coalition - Tour de Pink

2014 Tour de Pink West Coast

YSCTOURDEPINK.ORG

Calling for Names

I have this crazy idea, well not too crazy, but fun idea.

I am riding with my friends in the Tour de Pink in October.   It is a 200 mile bike ride to raise awareness and support for young survivors of breast cancer. (Young Survival Coalition)

I would like to put breast cancer survivors names on our team jersey.  I would love some nominations of names, people you know with breast cancer.  I have my amazing support group here in Utah but I am open for suggestions.  Shoot me an email with your ideas.  The email form is at the bottom of the blog.

Strange

Strange Feelings
   I recently signed up with my hospital to have access to my personal records.  It was so weird to read through my old Pet scan results, MRI's, blood work, ultrasounds, doctors notes.  I think doctors tell you what they think you want to hear.  I feel like I am a person who wants to know everything.  I like knowing the exact numbers, a little OCD about it.  It is so strange to read about this girl who had a large mass in the  upper right quadrant.  Doesn't seem possible, doesn't seem like me.  I am gaining distance from that girl every day.  It is a nice feeling.  

   I came to the conclusion yesterday that I can't worry about my cancer coming back everyday.  I am losing "good days" by worrying about "bad days" that may or may not come.  If it does, it does.  I need to enjoy all of these days, not stress about things that may not happen.  Life is so interesting.  I have learned so much over the past two years, things that I never expected to know.  I am stronger than I ever expected, I love deeper than I thought possible, I feel the pain with more perspective, and I laugh with less worry about "what other people will think".  Yes, life is funny.

Update

I have been super busy.  Maybe a little too busy.  I think cancer changes you.  I need to remind myself that I don't have to do everything.  I can say no to things.  The Young Survival Coalition has been keeping me crazy busy, not to mention I am in school at Southern Utah University, training for this huge bike ride and taking care of four kids (while on summer vacation from work).

Life doesn't always make sense to me.  Like sometimes, I look into the mirror and I don't recognize who I am.  Life doesn't always turn out like we plan, but we can make the best of it.  If I am granted more time with my family, then I am going to live and live hard.  I want to see things.  I want to meet people.  I want to learn about all sorts of things.  Does this make me crazy?  No, I think that it makes me human.  Sure, I have down days but I just have to get through those days and remember that for some reason I was saved.  There has to be a bigger picture.  There has to be a purpose to my being here for a little longer.  Make every day count, don't waste my time watching stupid TV and doing things that I don't care to remember next week let alone in ten years.

YSC has made me the Utah State Representative, by default.  I am the only leader in the state, ha ha.  I am looking for help other ladies start support groups throughout the state of Utah or Nevada.  If you know of anyone who would like to get this going, please send them my way.  robyn.brown2@yahoo.com

COME SEE THIS MOVIE

We would like to invite Southern Utah folks to come watch, Decoding Annie Parker, with us.  It is all about genetic testing and the individuals who studied these links.  Click on this link to pre purchase your tickets.   GATHR FILMS

The movie will be MAY 5th @ 7:30 PM at the Stadium 8 theaters. 

Happy 2 Year Cancerversary to ME!!

   It was exactly two years ago today that I got that heart breaking phone call, "You have CANCER".  I was in absolute shock.  In my mind there was NO WAY I could have cancer.  They must have made a mistake.  Maybe someone didn't do their job correctly??  Maybe my sample got confused with somebody else's??  I was 34 years old.  How does that happen??  Why does it happen??  After the initial shock and lots of crying, I resolved to kick this cancers butt to the curb.  I was NOT going to die.  I was going to do everything in my power to LIVE!!
    I went through four months of chemo, bilateral mastectomies, 5.5 weeks of radiation, reconstruction, having my ovary and tubes removed, going through early menopause and now taking a daily pill to eliminate my estrogen.  I feel like I truly am a survivor and living each day like they really matter.  I get scared too.  I am scared that "this might be my last Christmas, my last birthday, my last anniversary."  It is hard but it pushes me too.  I want to be a grandma.  I want to hold my first grandchild.  I want to see my kids go to college and start their own lives.  That is my goal.  I want to LIVE a normal life.
   Sometimes I wake up and think that all of this was just a bad dream.  That I will have my old body back, that my memory loss will be a cruel joke, that I won't have to live with this anxiety of the cancer returning (every single day) but then I remember that it was real.
    I am grateful for the cancer too.  I have met some of the most courageous, beautiful, kind and honest people through my trials.  People who love you, not because of your hair, car or career but because of your connection through cancer.  Cancer takes from you but it also gives.  It gives you a new perspective on life.  I was going through life kind of on autopilot.  I don't take things for granted now.  I know it can be taken away at any moment.  So, thank you.  Thank you for allowing me to have more time with my kids, my amazing husband and my friends.

   My next adventure is the Tour de Pink.  It is a 200 mile bike race over 3 days. It is in California right on the coast line.  I have committed to participate in this ride and raise $2500.  I have two friends who are also going to be riding with me.  We are raising money to be donated for the Young Survival Coalition.  This is the national group that our local YSC survivor group belongs to.  We have 10 ladies in Iron County that were diagnosed at age 45 or younger with breast cancer.  We call ourselves the Iron Young Survivors.  We have monthly meetings and activities.  We support each other and have a lot of fun together.  Cancer is so hard, it is important to come together and lift each other up.  

   I am riding the Tour de Pink because I CAN!!  I am riding for the 10 ladies in my group who I truly love.  I am riding for all breast cancer survivors.  This will be my marathon of sorts.  I am already in training.  Today we rode 9 miles.  We are gradually building up our endurance.  I can't wait to see the ocean and ride the Tour de Pink!!

                                                                      March 29, 2014

Loving this Picture

I found this picture and thought it deserved to be posted.  Loving the look!  It was right before my last surgery.  Why was I smiling?  I guess I am just goofy.

 This is Kaili at Camp Kesem.  They are gearing up for their big fund raiser on March 1, 2014.  If you are interested in coming, let me know and I will forward the information to you.  This camp has meant a ton to our little kids.  They get to just be KIDS!