Physical Scars: My Port

It’s summer time in Austin and I love my tank tops because its hot.  I’ve had two people call me out on my port scar. A quick background on ports:  A port serves many purposes. Not everyone that receives chemo will get a port. Some chemo cocktails can be harsh (duh they are like poison) when it becomes in contact with the skin or some people have bad veins or some people know they will have chemo longer or for the duration of their lifetime. Because I was HER2+, I was on Herceptin for a year and I was on Adriamycin and which was potentially harsh to the skin so I was recommended to have a port put in.  The port makes it easier to administer chemotherapy safely rather than having to start an IV each time. Elma cream is a topical that is a local anesthetic to relieve pain during port access so it is usually applied before going to the infusion room.


Ryan was one of the two that ask me about it during my last visit home.  He was 3.5 years old when he saw me bald and in the mist of  chemo.  I know my sister prepped him for my arrival home.  I flew home for Maria’s wedding and I was in the middle of Taxol.  Sure enough, he didn’t ever ask me about my wig, scarves or my bald head.  I wasn’t kidding when I mentioned that he was so mature.    

This was the top I was wearing when he asked about my port.  He's finally wearing another color besides red.  It's the shirt I got him when I was in Cozumel.  You can't see the port in this picture because the port is on my left side.  

I think often how people with a significant other seems much better off going through treatment, especially chemo, than someone that was single.  I think the most challenging position would be to have children, especially young children, while going through treatment.  Scratch that, the absolute most challenging is being a single mom and having children. 

It felt as if my heart stopped beating for a few seconds when Ryan inquired about the line on my chest.  I asked him if he remembered when I was bald.  He said he did.  We talked how I had surgery to put something in there to help me get my chemo medicine easier.  Kids are resilient.  No other questions and he was excited to be watching Spiderman. 

Not so obvious but obvious enough if you're looking for it.  Ryan is at the perfect height to see it.  We were walking into the movie theater when he saw it.  

Moms have to explain to their children all the time that they have breast cancer.  It’s the moms that go through chemo that the children can finally see that their moms are sick.  The pale skin and no hair are dead giveaways.  The other side effects just compound things. 

We’re so fortunate to have Wonders and Worries in Austin.  They are a local nonprofit that can help the parents talk to their children about this and they also offer support groups and one-on-one with the children.  I’ve heard nothing but wonderful things about them.  Call them if you need their resources.  Other cities have comparable programs out there too. 

We know that a diagnosis leaves many emotional scars.  It’s the physical ones that we see on a daily basis.  They start to heal and fade with time but hopefully it serves as a reminder of how far we’ve come and for us to never take life for granted.

“Epic” Summer 2012 in NM

I just got back from my annual summer trip to visit family and friends.  I titled it “Epic” because Ben, the 5.5 year old, told me that the fireworks this year would be epic.  It amazes me how articulate they become and how they still have their childhood innocence.  It brings a smile to my face as I write about my nephews. 

Of course, I had a fabulous time with them.  Ben started counting down my arrival weeks before I landed.  He apparently woke up at 5am anticipating my arrival.  He’s still so sweet yet mischievous at the same time.  I have to dub him as the charismatic one. 

Then there is Ryan, the almost 10 year old.  He has gotten much taller since I saw him last in December.  He’s still the overly sensitive one but has grown a great deal of maturity.  We set up a Gmail account for him and I gave him my old camera so he would be able to send me photos of projects.  (We’re not quite up to Skyping yet but maybe next year.) 

My dad picked me up from the airport and we went to Sunflower to pick up things for my green drinks.  This is our usual routine and would be as close as we would get for bonding time with my dad.  He was cute because he asked me if I got taller or if I lost weight.  I think my bangs made me look taller and thinner? 

My mom is learning balance.  She didn’t say anything negative and didn’t over inquire about my life.  Life is good with her.

My brother-in-law started working day shift.  It was nice having him around rather than seeing him in passing. 

My brother is the guy with the big heart but super laid back.  We went hiking though we took one wrong turn and the boy scout in him had to whip out the flashlight.  I joked around that Twitter will read that Two Limary’s lost in mountains, one from Texas.  Okay, so I’m a little overly dramatic.  We were able to see homes on the trail.  He took me to the Flying Star on Paseo which is very nice and my first time there.

My sister is the only female running a household of males.  She loves her new job and can be as sassy as my mom.  She bought me a pedicure and it still looks good as I stare at them while I type.

 Then there are my friends.  I miss them dearly.  I was able to see Maria + her fam, Mary Ann, Alicia, Sue and Michelle.  I saw all the friends I wanted to see but one.  They warm my heart and I have a twinkle in my eye as I think of them.  Here is the break down:  I’ve known Maria and her family since seventh grade so over 20 years.  I’ve known Michelle since sixth grade though we became good friends in seventh grade, another over 20 years of friendship.  Michelle’s partner in crime is Justin and he’s so good to hang with us.  I’ve known him since senior year so just less than 20 years.  I also figured that he was the first person to ever get me drunk!  I’ve known Alicia, Sue and Mary Ann roughly freshman year so about 20 years.  Sue and I really became good friends sophomore in college when she moved back to ABQ.  We had some great laughs and great memories since then.

I was able to spend quality time with them.  I saw Maria and her family several days leading up to Cathy (her baby sister’s wedding.)  I was their adopted sister and I love her parents too.  We were able to hang at Flying Star which is one of my favorite places.  I miss and love all my friends dearly, even if they always make me feel guilty for leaving them.  It truly was an "epic" summer.

Brain Power 5K

My friend Kelly, aka twin Sis, is the founder and the head honcho of Brain Power 5K.  Let me give you a little back story on how I know Kelly and why I'm so passionate about her cause.

Kelly and I met back in the spring of 2010 when I was training for the Danskin bike and run portion.  My knee was acting up so I ended up doing just the bike portion.  She was assigned as my runner and it's been twin sis ever since.  The twin Sis thing came about because I'm 366 days older than her and we were both diagnosed in November but she had brain cancer and I had breast cancer.  One day we had on the exact same shoes so we started celebrating our birthdays together and started calling each other Sis!

That is how we met and she's an all around amazing person but let me share her compelling story.  She just had her daughter when she had a grand mal seizure.  Thankfully her husband was home and heard her seizing in the other room from the baby monitor.  She had to have brain surgery and, as you know, things are never the same after surgery.  I won't begin to explain how things changed for her because I don't understand but it did.  She couldn't find local resources so she started Keep Austin Aware.  That eventually morphed into the Brain Power 5K where she raises funds for the Dr. Marnie Rose Foundation for brain cancer research at the University of Texas MD Anderson Cancer Center as well as pediatric initiatives at Children's Memorial Hermann Hospital.  The race takes place September 9th in Round Rock.  Details can be found via Facebook or the link above.

Kelly raised over $20,000 last year and her goal is to raise $30,000 this year.  Besides being her Sis, I've always been one of her biggest fans.  I'm the Race Chair this year and am very honored to be in this role.  Please consider donating, running or sponsoring this race.

Upcoming Webinar

If you're so incline, I will be part of the Breast Cancer Action Webinar next week.  All the dets are below.  Just a reminder that this case and anything in this blog is based on my personal opinions and are not tied to any organizations that I am affiliated with.  

Free Webinar: Take Back Our Genes: Ending the Patents on Breast Cancer Genes

Please join us on Monday June 25th or Tuesday June 26th for this important free webinar: Take Back Our Genes: Ending the Patents on Breast Cancer Genes to learn about how one company’s control of the BRCA genes creates barriers to research and testing that could endangering your health and the healthcare of hundreds of thousands of women.

In 2009 Breast Cancer Action signed on as a plaintiff in the patent lawsuit challenging Myriad Genetics. The lawsuit, filed by the American Civil Liberties Union (ACLU) and the Public Patent Foundation, challenges the validity of the patents that grant Myriad Genetics control over the BRCA1 and BRCA2 (the “breast cancer”) genes. Myriad’s monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer. It also limits women’s ability to get second opinions when they receive ambiguous test results, which happens disproportionately to women from ethnic minorities, including African-Americans, Hispanics and Asian-Americans.
We are the only national breast cancer organization named as a plaintiff and we were able to take this stand because we had no conflicts of interest: we don’t take money from companies that profit from or contribute to cancer and because our work demands patients should always come before profits.
The webinar will be presented by BCAction’s Executive Director, Karuna Jaggar; Sandra Park, Staff Attorney for the Women’s Rights Project at the American Civil Liberties Union; and Runi Limary, breast cancer survivor and plaintiff. Topics to be covered include:

• Why BCAction opposes gene patenting and why it is important for women
• The impact of gene patenting on underserved communities
• The status of ACLU’s lawsuit challenging the legality of patents on human genes
• Real stories of women’s experiences with gene patenting 
• How you can get involved

Join us on Monday June 25th 3pm PDT/6pm EDT or Tuesday June 26th 10am PDT/1pm EDT for this free one-hour webinar to hear the real story about the effects of gene patents on women’s health and to join us in opposing corporate control over our bodies, our genes, and our health.

Register for Monday June 25th 3pm Pacific Daylight Time/6pm Eastern Daylight Time

Register for Tuesday June 26th 10am Pacific Daylight Time/1pm Eastern Daylight Time

For your convenience, we are offering the webinar at two different times. Click on the links above to register for the time and day that works for you.

 

Mamma Jamma # 3

It's that time of year again!  On October 27th I will participate in my third Mamma Jamma Ride as a rider. The Mamma Jamma ride means so much to me.  It's such a sense of community, a great way to honor those touched by cancer and to remember those we've lost to it.  It's knowing that one person can make a difference.  The funds will help people deal with cancer whether directly or indirectly.  I've met such amazing people in the training ride and have found a love for cycling.  Lucky for me I've found a cardio exercise that I can compromise for the bad knee and having to give up jogging.  I just rode 25 on a windy and hilly Palmer on Sunday so I should be doing the 45 miles as long as my knee continues to feel good.  Anyway, below is what is on my fund raising page.  Please consider donating, really even $5 helps.  

Mamma Jamma Kick Off Party in May

 
This is why I ride
Thank you so much for visiting my page!

I was diagnosed at 28 on November 16, 2005 with breast cancer. Getting cancer at a young age was the best and worst thing to happen to me. I feel fortunate that I "get it" at a young age about the meaning of life. However, there is a sense of sadness how cancer takes away a part of your innocence. I'm doing this ride in memory of three sweet fallen sisters: Becky Davis, Shannon Iezzi-Watson, Alison Thibert and others that we have lost along the way.

I've been so fortunate to meet amazing survivors that have helped me through this difficult journey. The BCRC and Pink Ribbon Cowgirls made this experience a little less frightening and lonely. Survivorship is also something else to deal with. Having a network of breast friends makes a world of difference. Who better else to "get it" than the people that also experienced it?

The 9 other organizations that this ride supports are also wonderful. I've been fortunate to do some training with Team Survivor and have worked with Wonders and Worries to help out the children in our group.

Any contribution helps! Please consider volunteering, riding or making a donation. Even a $5 donation helps!
2009:  I was a volunteer getting inspired to ride by the amazing riders. 

2010:  I caught the bug and rode 72 miles at Mamma Jamma in 6 hours on my mountain bike. It was hot and humid but the amazing volunteers and the purpose of the ride carried with me throughout the ride.

2011:  I rode 42 miles on my road bike but only trained for the 27 miles.  My knee feels great thanks to my PT! Many thanks to all the volunteers and those that made this ride possible.

2012:  I'm hoping to ride 42 miles again this year. 

Much love,
Runi

Advocacy and Washington DC

I attended the NBCC 2012 Annual Advocacy Summit in early May.  I do a great deal of work with patient advocacy and to raise funds and awareness but my work with advocacy is limited to signing on to petition and my involvement with the case against gene patenting.

Marj and I (it was VERY windy)

NBCC's goal is to end breast cancer in 2020 by focusing on what causes cancer, creating a vaccine and/or focusing on breast metastasis.  On lobby day the Texan group spoke to our Texas Representative to get those of them that have not already signed on to the HR 3077, the Accelerating the End of Breast Cancer Act.  I attended five sessions and we spoke with the assistance each time.  One of the five were real receptive and it was promising for those who didn't sign on to sign on.  Our work paid off because to this date, we have 14 of 32 Texas members of the US House of Representatives to sign on.

Thanking a Representative for signing on already

Supreme Court

Being at the Advocacy Summit, participating in lobby day and sitting inside the Supreme Court really resonated that to me that one person can make a difference in this word.  It took one person's vision and passion to create an avalanche of change.  All the strides, all the clinical trials, all the medical advances are because of people that voiced their opinion and made things happen. 

My goal is to continue to make a difference each day but I'm much more hungry to find a way to make a lasting impact. Photos to come

Sue and I

Shala and I

Also, talk about small world!  I was able to meet up with a dear friend in that lives in Albuquerque but was in DC with her students!  I was also able to meet up with an old high school friend that lives in DC!  My trip to DC was very memorable for many reason.  Geez DC really needs to have more museums and things to see and do.

Why do I do the work that I do?

If I ever doubted why I do the work that I do, Saturday night at Art Bra Austin confirmed why I do what I do.   The clip above is less than 30 seconds long but this was Art Bra Austin in a nutshell. It captures the courage, beauty and sisterhood of these magnificent ladies.

Why was the evening so meaningful?  So many of my clients were there and thanked me for all my help or all the help of our organization.  We saw many doctors there supporting us, supporting the work that we do.  We had a large number of volunteers that were either clients or they love our mission work.  Some of our volunteers were there since 8 am until 11pm or even midnight!

 

This is the last video that I finally uploaded.  It still makes me cry each time I see it.  So THIS is why I do the work that I do.

I leave you with a picture of Dr. H and I. She is wearing 5 inch heels that actually matches my dress.  I don't know how she does it.  I'm also wearing wedge heels in this photo too, though you can't see them.  Isn't she the most fashionable and cutest?   Also, I haven't forgotten to blog about DC, that's next!