Live Your Life

9/17/2012 I finally made it to MD Anderson

Finally I got to Houston!  The roads that lead to MDA was rather bumpy.  I had a difficult time having my case manager return my calls.  Okay, the original case manager never returned my call after several voice messages.  It got to the point that MDA closed my case because they never heard back from me.  So you can see how upset I was.  Thankfully I was not a newly diagnosed patient but was appalled that a world renown center would treat a cancer patient like that.  

Anyway, I got my case reopened thanks to an email to my oncology nurse.  I was able to switch case managers and to tell them my story so it didn't happen to anyone after me.  Needless to say, things went smoothly from that point on.  So smoothly that I've been highly impressed by MDA besides that incident.

I got to spend the weekend with Blanca.  I didn't get in until that afternoon because there was a benefit for one of our ladies that passed last month.  The benefit was amazing and raised about $4000.  I had a great time hanging out and catching up with Blanca and her daughter Izzy who is cute as a button.

Fast forward to this morning.  I got to MDA early to make sure I found it correctly.  Besides, I haven't met my deductible yet for this year so this visit was going to cost me about $500 so I didn't want to be late for it!  The directions they gave me was great and so was my GPS.  Information center was great and before I knew it I arrived!  Some photos as proof.

Fancy, this is how an actual cancer center works...especially a world renown  one.

From start of registration to the nurse that walked me out was an amazing experience.  Everyone was courteous and prompt.  It was only Dr. Litton the breast, fertility and genetics specialist that I had to wait for about ten minutes.  Of course, I had to undress from the waist up and opening to the front.  Robe is below and so is the funny story of the sign I forgot to snap a photo of:

I forgot to take the photo of a sign to NOT take home the robes but they can be purchased to  take home on level 2.  Not sure why someone would want a souvenir of a robe from a cancer center but what do I know?  It was soft enough but still...

Anyway, I met with the nurse and went over my history as well as why I made my way to MDA after almost 7 years of diagnosis.  Dr. Litton came in with a newbie and started spewing my stats and everything I went over with the nurse without ever looking at notes or my chart of my files.  Damn!  I was impressed!  She was also warm and compassionate and definitely knew her stuff.

In a nut shell:

She doesn't think I am BRCA+ but would like me to consider the BART or P53 test.  I've heard of P53 and remember asking Dr. H about it long time ago but forgot what was said about it.  Anyway, she would rather me do the P53 over BART since I'm HER2+ and BRCA is usually TNBC.

Studies shows it's safe for breast cancer patients and ER+ ladies to have babies 2-4 years after treatment.  (Or may have been diagnosis.  Darn, forgot.  But regardless I'll fall into that guidelines.)  Of course there are not guarantees but she doesn't see why I shouldn't if I wanted to have a baby.

She does not believe in follow up scans or tumor markers.  In my case, she would want to run a complete breast and abdomen/pelvic CT scan to ensure there isn't a micrometasis anywhere prior to getting pregnant.  I told her this was not immediate since I haven't established my life partner so she said to have it done before I was serious about this.  Of course this is pending P53 results.

She feels 5 yrs of Tamoxifen is enough and that no more is needed nor is an oopherectomy!

I have a small window of opportunity where my eggs would be viable and producing but we know once women hit 30's that it drops significantly and even more so since I had chemo.  So my initial thinking that I have up to 5 years might be wrong.  We didn't establish the numbers in years but I am probably producing less eggs that an average 35 year old.

My body is forever changed.  I need to consume about 75% of the calories I consumed prior to treatment and for the rest of my life.  I guess I shouldn't beat myself over the head over those last 10 lbs.

Basically she answer ALL of my questions and would have answer more if I thought of more.  I seriously was aiming for 25 minutes with her.  I was in there with her for about 45 minutes.  I was with the nurse for about 10-15 minutes.  Needless to stay, I'm a happy camper.

As Dr. Litton left the room she told me, "Live your life."  With that, I'm back in Austin and am enjoying a cocktail.  I have an appointment with Dr. H next Monday to discuss everything and see how much this P53 test costs.  If that is all clear and my CT scans are clear and I find my partner in crime I have a green light.  I also feel good about keeping my ovaries at this point in time unless more data comes out.

Guess it's time for me to LIVE MY LIFE!  Cheers! 

Fast Down and Dirty on Babies after Breast Cancer

I thought this was well written and to the point.  I have my appointment with MD Anderson later this month and thought this came in a timely manner.  I'm hoping my appointment with them will be insightful rather than a short 15 minutes of, "You're healthy.  Keep up what you're doing and just go for it!  See ya!"  

Babies After Breast Cancer: What are the Options?

August 26, 2012
by Amy Jacobson, RN NP-BC UCLA LIVESTRONGTM Survivorship Center of Excellence

In an ideal world, along with chemotherapy classes, newly diagnosed breast cancer patients of reproductive age would receive counseling on how their treatment may negatively affect their ability to have children and what options are available to them to preserve it. Unfortunately, research shows this may not be the case, as a recently published study of young female cancer survivors in California indicates that only about 12% remembered receiving counseling about how to preserve their fertility¹.

What are the options available to breast cancer survivors who were unable to take steps to preserve their fertility at the time of diagnosis? The answer to this question depends on the treatment received. For example, Ductal Carcinoma in Situ (DCIS) treated with surgery and radiation will likely have no affect on a survivor’s ability to conceive and carry a pregnancy. However, if a woman is taking Tamoxifen pregnancy is contraindicated due to the risk for birth defects.  A woman who received chemotherapy that affects the ovaries (such as Cyclophosphamide or Adriamycin) and becomes prematurely menopausal may be unable to have a biological child, but could carry a pregnancy to term through fertilization and implantation of a donor egg (if she is not taking Tamoxifen or other endocrine therapy). If she doesn’t have a partner, she could utilize donor sperm. Reproductive specialists throughout the country offer women the opportunity to choose egg and sperm donors based on their physical characteristics, educational accomplishments and even what they enjoy doing in their spare time. Adoption is also a possibility, through private agencies, international channels and foster care.

But all of these options come with a cost, both financial and emotional, that a survivor may not be aware of. Most health insurance plans do not cover fertility treatments (even for cancer patients), and a donor pregnancy may cost more than $10,000. Private adoptions often include legal fees and medical coverage for the expectant mother, and the mother has the right to withdraw her consent to give up her child at any time. And, cancer survivors may carry the extra burden of fears of cancer recurrence.

So, it is important for the survivor who wants to start a family to not go it alone. Googling late at night can be overwhelming, and reading message boards filled with horror stories and secondhand information can also result in emotional overload. Establishing support with a qualified counselor or clergyperson for the journey ahead is critical. Finding a reputable reproductive specialist is also important, particularly one who has experience with women who have been through cancer treatment. Completing a realistic budget before proceeding is critical, so that emotions don’t dictate finances.

A good place to start is myoncofertility.org, which offers quality patient resources on fertility after cancer. They also have a toll free help line at (866) 708-FERT (3378) to answer questions about fertility after cancer.  Another great resource is Fertile Action (www.fertileaction.org), a non-profit organization started by breast cancer survivor Alice Crisci to assist with decreasing some of the financial burden associated with fertility preservation/treatments for both the newly diagnosed and post-treatment patient. Fertile Hope also has a searchable resource guide that includes adoption agencies, mental health professionals and surrogacy agencies on their website at www.fertilehope.org.

UCLA LIVESTRONG Survivorship Center of Excellence 

References:

1. Niemasik, EE, Letourneau, J., Dohan, D., Katz, A., Melisko, M., Rugo, H. & Rosen, M. (2012) Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. Journal of Cancer Survivorship. doi: 10.1007/s11764-012-0227-9

Update on Gene Patenting Case

If you've been following me for a while, you probably remember that I am a plaintiff in the ACLU vs. Myriad Case on Gene Patenting as of May 12, 2009.  To review, Myriad owns the patent on the BRCA1 and BRCA2 test to see if people carry the BRCA1 and 2 genetic mutation.  Weird, right?  How can a company own patent rights on genes?  Unfortunately, thousands of genes have patents on it.  Anyway, back to the BRCA genes.  If you carry the mutation, it increases the chance of breast cancer and ovarian cancer by more than half.  My stance on it is that I am BRCA1 positive but with a variant of uncertain significance.  What does that mean you say?  It means that my variant was seen in only two other women, both of whom are Asian.  One of them had breast cancer and the other does not.  So it makes it 2:1 ratio of Asians with breast cancer.  For those of you that studied statistics, you realize that there is not a large enough sample population to really decide whether or not I truly have the BRCA1 mutation.  No other researcher or companies can test my genes with this patent.  Many underrepresented minorities end up with this ambiguous variant of uncertain significance.

I think, I hope I don't carry the mutation but I just don't know for sure.   I still have to consider my ovaries so that is a big deal.  Anyway, this is how I got involved with this case so I think you're all caught up.  But if you're very intrigued and would like to really follow this case from the beginning you can  check out ACLU's site.  Another divided 201 decision from the courts of appeals on August 16th.  Circuit Judge William Bryson dissented, saying, "the court's decision, if sustained, will likely have broad consequences, such as preempting methods for whole-genome sequencing, even though Myriad's contribution to the field is not remotely consonants with such efforts."


Myriad wins gene patent ruling from US appeals court

By Jonathan Stempel
Thu Aug 16, 2012 4:23pm EDT
(Reuters) - A U.S. federal appeals court has once again affirmed the right of Myriad Genetics Inc to patent two genes linked to breast and ovarian cancer, after the U.S. Supreme Court told it to take another look at the hotly contested case.

A 2-1 panel of the U.S. Federal Circuit Court of Appeals in Washington, D.C., on Thursday upheld the biotechnology company's right to patent "isolated" genes known as BRCA1 and BRCA2, which account for most inherited forms of breast and ovarian cancers.

But the court denied the company's effort to patent methods of "comparing" or "analyzing" DNA sequences.

Women who test positive using Myriad's gene test, called BRACAnalysis, have an 82 percent higher risk of breast cancer and a 44 percent higher risk of ovarian cancer in their lifetimes.

The lawsuit against Myriad and the University of Utah Research Foundation, which hold the patents on the genes, charged that the patents are illegal and restrict both scientific research and patients' access to medical care.

The American Civil Liberties Union, which brought the case, argued that patents on human genes violate the First Amendment and patent law because genes are "products of nature."

But Circuit Judge Alan Lourie, writing for the court majority, said, "Everything and everyone comes from nature, following its laws, but the compositions here are not natural products. They are the products of man, albeit following, as all materials do, laws of nature."

Thursday's decision in the ethically charged litigation came five months after the U.S. Supreme Court, in a case involving a blood test developed by Prometheus Laboratories Inc, unanimously ruled that companies could not patent observations about natural phenomena.

A week later, the Supreme Court set aside the Federal Circuit's July 2011 decision favoring Myriad and directed that court to review the case again in light of the Prometheus ruling.

Myriad's patenting effort has drawn opposition from groups such as the American Medical Association, the March of Dimes, the American Society for Human Genetics and the Association for Molecular Pathology.

In a brief arguing against patenting genes, Dr. James Watson, co-discoverer of the double helix structure of DNA, said he feared the court failed to appreciate the fundamentally unique nature of the human gene, which stores information necessary to create and propagate life.

"It is a chemical entity, but DNA's importance flows from its ability to encode and transmit the instructions for creating humans. Life's instructions ought not be controlled by legal monopolies created at the whim of Congress or the courts."

Nevertheless, the appeals court accepted the argument of Myriad supporters that denying patent protection could stifle innovation by the Salt Lake City-based company and others.

"Patents encourage innovation and even encourage inventing around; we must be careful not to rope off far-reaching areas of patent eligibility," Lourie wrote.

CRITICS DISAPPOINTED

In upholding Myriad's main patent claims, the Federal Circuit again reversed much of a 2010 ruling by U.S. District Judge Robert Sweet in Manhattan.

"We have viewed this as the most important (part of the) decision for Myriad and therefore view the appeals court reversal as a clear positive," Cowen and Co analyst Doug Schenkel wrote. He rates Myriad "outperform."

Roughly 20 nonprofit groups, medical organizations, doctors and individuals challenged Myriad's patent claims, and it is unclear whether an appeal is planned.

Thursday's "extremely disappointing" decision "prevents doctors and scientists from exchanging their ideas and research freely," ACLU lawyer Chris Hansen said in a statement. "Human DNA is a natural entity like air or water. It does not belong to any one company."

Myriad's argument is that when it isolates the genes by removing them from the body, this process changes their chemical structure, and the company's test looks for this distinct chemical form.

Gregory Castanias, a partner at Jones Day representing Myriad, said in a phone interview: "We're very pleased that the panel has continued to recognize that isolated DNA molecules are products of human ingenuity, and are thus eligible for patent protection."

Supporters of Myriad have also said denying patent protection could slow advances in personalized medicine, which uses genetic tests to identify specific therapies for individual patients.

Biotech patent attorney Tim Worral of Dorsey and Whitney said in a statement the implications of the decision extended to most corners of the biotech industry.

"Although the decision will probably be appealed to the U.S. Supreme Court, the biotech industry is breathing at least a temporary sigh of relief," Worral said.

For today, he said the decision is "a win" because much of the value associated with DNA-based inventions are based on the notion that DNA claims are patentable.

Circuit Judge William Bryson dissented from Thursday's decision, saying it "will likely have broad consequences," and perhaps pre-empt methods for whole-genome sequencing.

Sandra Park, an attorney for the ACLU, said the Myriad patents have allowed the company to "maintain a monopoly on BRCA testing in the United States," noting that women have only one option for discovering their genetic risk for breast and ovarian cancer.

And the test does not look for all of the potential causes of hereditary breast cancer, she said.

Park said in recent months, the National Comprehensive Cancer Network issued revised treatment guidelines about BRCA genetic testing, suggesting that all women should also be tested for large rearrangements on the genes. Myriad's $3,000 test does not look for those changes, so doctors have to order a second, $700 test, which insurance companies may or may not pay for.

Park said the ACLU needs to consult with its clients before deciding whether to appeal to the U.S. Supreme Court. It has 90 days in which to do so.

In afternoon trading, Myriad shares were down 13 cents at $24.86 on the Nasdaq. They traded in a range of $23.07 to $25.24 within a half-hour of the Federal Circuit's issuance of its decision.

The case is Association for Molecular Pathology et al v. U.S. Patent and Trademark Office et al, U.S. Federal Circuit Court of Appeals, No. 2010-1046.

(Additional reporting by Julie Steenhuysen in Chicago; editing by John Wallace, Dan Grebler and Bernard Orr)

12 Plus Inches

I donated about 10 inches prior to surgery when I was first diagnosed to Locks of Love.  I had my first round of chemo in February 2006 and lost my hair about 10-14 days after my first chemo.  My hair started growing back shortly after my last round of chemo which was the end of June 2006.  I think it was early October 2006 that I finally went around without any head covering.  So this photo below is about 6 years in the making.  My hope was to donate my hair once more but for it to be MY choice this time.

Before photo that was taken just a week ago, August 16, 2012

It was getting to the point that it was too long and I was itching to get it cut.  However, I wasn't ready to part with my long hair either.  The bangs was my interim to get some movement.  I wanted to donate this time to Wigs for Kids because the wigs are given to children completely free.  Locks of Love is still a great organization.  They give out their wigs for free or on a sliding scale basis.  This time around I wanted to do it simply for free and thought it would be 11 inches.  When it came down to the big day, I found out Wigs for Kids require 12 inches.  12 inches!  That's a lot of inches!  You're probably thinking its only 1 inch difference but that seems like a lot when I've been growing my hair out for so long!  I flip flopped back and forth between 10 or 12 inches that entire afternoon.

I had an appointment at Birds Barbershop which is a total Austin place.  They serve you Shiner while you're waiting (too bad I don't like beer) and a gal name Cricket with tats cut my hair.  I told her my dilemma and that I wanted a lob and not a bob.  I even showed her some photos.  We agreed that I would show her how short I wanted to go and that we would go from there.  

That is what she did.  We didn't even measure it because we knew it was at least 10 inches.  From there I told her I wanted a lob but that she's the expert and for her to do her thing except that I didn't want the back to stick up and perhaps some side layers would be nice.  

I found out when I got home that it was over 12 inches!  I also couldn't believe that I stressed out so much...especially when its hair that will grow back!  Especially since I now have hair! 

Over 12 inches to donate!

After Photo August 2012

A few things prompted me to cut my hair even though it was close to time to cut it anyway.  I saw my before photo.  It was just time because it looked so dated.  Secondly, my last post about saying good bye to another young survivor.  It was a hard death for me to cope with so the cut felt like it gave me a chance to be  a new Runi.  I'm also hoping to donate it in honor of the last two fallen angels.

Dug this up from the archives:  After Photo December 2005

I'm uncertain if I will donate my hair again but it felt so good to do it on my terms and not cancer's terms!  

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.