Normal 35 year old?

I said good bye to another young survivor last week.  Its the first death that I didn't want to face.  Of course I'm devastated that she's gone but I know she is now at peace.  I always say that it's those that are left behind that suffers.  It's the family, loved ones and friends that suffers.  Somehow I didn't want to deal with it.  I wanted to be a normal 35 year old.

For me to be normal would be to go to a job that does not deal with death and dying.  Teaching had its tough days but I never had to deal with a student that passed.  I could be at a job that I worked with computers all day.  I could be at a job that I worked and managed stuff rather than human beings.  I would go to happy hour with friends and not feel guilty if I had more than a glass of wine.  I would eat friedfoods and grains and not feel so bad about it.  I would not have to attend more funerals and memorials than I do weddings and baby showers.  Each person that passed has a special place in my heart but each death also takes away a little bit more of my innocence.  

Maybe this signals that I am just a normal 35 year old because it was the first time I wasn't strong all the time.  I am human.  I work to take care of others.  I have an amazingly rewarding job.  I find balance with my job and life 90% of the time.  I guess it just means that I am a fairly normal 35 year old.

My New Niece and San Diego Which Means I got into Project Lead!

My baby niece Hana Sierra Sirard was born July 19, 2012 around 5:30pm at NAMC.  Both mama and baby are doing well.  Everything worked out well.  I picked up my mom from the airport on Wednesday and Hana was born on Thursday.  I’m so glad I got a chance to see her because I was afraid I was going to be in SD during that time.  I was able to see her on Friday too. 

Lori who was my roommate, study partner and partner in crime.

8 out of 12 months or 2/3 of the year completed.  I just returned from completing NBCC’s Project Lead.  Over 200 people applied and only 60 got in.  I’m proud to say that I’m now a Project Lead Graduate.  Just a reminder that Project Lead was created to educate and craft strong breast cancer advocates to make a difference in this world.  Don’t’ forget that Herceptin was pushed through and approved by the FDA a few years before it would have because of the work of NBCC.  I was able to have Herceptin in 2006.  My head is still spinning from everything that I learned and from all the people that I met but it all will sink in with time.  I think there were about six BRCA ladies there.  I’m feeling more and more passionate about the work I’m doing with my case.  We’re hoping a decision will be made within the next few months. 

Overall, I’m doing fairly well with my goals.  I can even say that I’ve slacked off on my bucket list but I did something in San Diego that was not on my bucket list but is bucket list worthy.  Therefore I will add it on there so I can officially cross it off. 

I am not a spontaneous person.  I lack that a great deal and I’m working on improving upon it.  On 7/26/2012 Thursday about 4pm PST I went paragliding!  I remember arriving at SD and walking to Black Beach.  I saw people surfing and paragliding.  I was thinking that people there were nuts for doing either of those.  Surfing is obvious since I’m scared of open water.  As you may remember, swimming in 6ft pool was one of my goals but I found out I’m allergic to a cleaning agent.  I’m not a strong swimmer but I’ve come a long way.  Open water of course terrifies me.  Then there are heights.  I never thought I would sky dive, paraglide or anything of the.  Well, we got a 3 hour block off during the day from our training.  Some people planned to paraglide, some to go to La Jolla downtown and our group thought about the Safari tour.  The safari tour didn’t seem that great on the web and some of us went to La Jolla downtown earlier.  Would I consider paragliding?  Definitely not on my own!  I flip flopped back and forth and even searched injury/deaths and was trying to calculate ratios.  Eventually I decided that I would do it unless the weather was not optimal.  Not optimal weather would mean the weather gods didn’t want me to go. 

I got there early to see the ease of people taking off and landing really helped ease my mind about the safety of paragliding.  People landed so gently, nothing like the landings of parachuting.  We did this tandem so a pilot really did all the work.  My pilot was Steve from Austin.  He was calm and cool and got us walking towards the cliff and once we were up in the air I was no longer nervous.  It was surreal and so zen up there!  I was able to see the entire coastline of La Jolla and the beautiful multimillion dollar homes.  It was breathtaking and so calm!  Steve even let me “drive” us.  He taught me how to turn left and right.  He even had me turn 360 both ways and our hanger was angled about 45 degrees and I would see the bottom of the beach perfectly.  It was scary but so amazing at the same time.  My hands were sweaty so I was so scared of accidently letting go and killing the two of us.  I have no regrets doing it and I’m proud of myself.  I’m going to try to force myself to truly get out of my comfort zone more often.  I’ve been saying I’ll be more spontaneous and that is applying to going out on an unplanned outing…ummm…much different from this.  I’m going to do it.  I’ve thought a great deal about my mortality since my diagnosis at 28 so why not actually LIVE?  If I die I can die living!   

San Diego was wonderful!  I was able to walk and to lay out at Black Beach, even if it was only for an hour.  I was able to walk through UCSD.  I went to the Cove and La Jolla downtown.  I spent time with my BFF Maria and her family at La Jolla Beach and Regents Pizza near campus.  Yum!  I may not make it home this Christmas because of little Hana so it was good seeing her again.

Nikki is someone I knew from middle school and was much closer with her in middle school but we connected again on FB.  (What did we do prior to FB?)  Anyway, she saw I was in SD so we got together.  I met her adorable daughter Riley and we went hiking at Torrey Pines Park.  Darn chemo brain because I don’t remember if that is where Abby took Shell and I back in 2002 when I was last there for spring break.  Anyway, it was the perfect way to end my last day in SD because I was able to exercise, enjoy the amazing weather and to enjoy the beauty of SD.  She seems to be doing really well and I’m so happy for her.  We had lunch at Old Town before I departed.  Crazy because when I was in DC I saw Sue and Shala and both were from FB.  Maria and I of course coordinated earlier but such pleasant surprises! 

I’m been out of town a great deal the last few months.  I’ve enjoyed it a great deal but I’m ready to stay put and get my life in Austin in gear.  I have the Brain Power 5K coming up in September.  I’m now volunteering with the Saheli group.  They focus on domestic violence for Asian women.  They have a White Crane Gala in October that I am attempting to help them with and will be able to once I get caught up with work.  Of course I have the Mamma Jamma Ride coming up but the training rides are easy because I doubt I’ll do over 30 to 35 miles.  Training for that I’ll still be able to do 45 on ride day.  Of course then I have my own personal life.  I’m now a new Aunt, I have my friends and I have my love life I’ve been meaning to work on.  Between all that, I want to be the change I see in this world with my volunteer work and then I need to push myself in my actual job.  I’ve been with my job for over five years now so it’s a good time for reflection.  Remember to begin with the end in mind!  

Tribute to Stephen Covey

'7 Habits' author Stephen Covey dies after 

cycling accident on 7/16/2012

For those of you that are not familiar with Stephen Covey and he book 7 Habits, in some ways it was the book that changed my outlook on life. I was one of those overachieving, high stressed teacher that had to run every after school activity, tutor every student, spend countless hours working and just never stopped working. I'm not sure if stress contributed to my cancer but it just wasn't healthy.

I remember ready Covey's book about a year or two prior to my diagnosis. Ironically, I never finished his book. His first two habits changed my outlook on life.

Habit 1: Be proactive and not reactive

Habit 2: Begin with the end in mind

Habit 1 basic tells us to take responsibility for our life. Instead of blaming others, what can we do to make things better? Instead of being angry and reacting, what can we do to actively change things? What can we change and what can we not change? Worry about we can control rather than things that we cannot control. I treated my diagnosis this way. I had cancer but instead of blaming others and moping around, I made the best of my situation.

Habit 2 makes us visual who we want to be. What do we want people to say about us at our funeral? Who do we want to see at our funeral? It's almost like Socrates' "The unexamined life is not worth living." It's like be the change you want to see in this world. I hope through my teaching and my work as a patient navigator and my volunteer work I am doing this.

I actually read to my students this book that was written for teens. I'm not sure if it impacted my students the way it impacted me but hopefully at least one student was inspired by it.

Covey died yesterday in a cycling accident. He made a lasting impact on me so job well done with Habit 2 if that was his intention.

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.