Focusing on the Neck Up & November 2010

Now that I'm "put back together" I can focus on the neck up. I've always had bad oral health prior to chemo. Both my parents have bad oral health so again I am genetically at a disadvantage when it comes to oral health. They recommend getting your teeth clean prior to chemo because you will not be able to get them clean during treatment because of the low white blood count. Our mouths is a breeding ground for bacteria and germs, especially when they clean near the gums.

I am currently having oral work done. I don't think chemo helped my situation but it isn't the only culprit. However, I know two women that swear that their oral health declined immensely post chemo. I'm writing on this topic hoping anyone that stumbles across this takes extra special care of their oral health before, during and after chemo.

Unfortunately I am a type A personality. I've been grinding my teeth since college. All the grinding has caused my bite to become off. I'm currently having that corrected without jaw surgery which used to be the only option out there. They can now use TAD Temporary Anchorage Device to move the jaw. The TAD has its pros and cons too but I did not any more big surgeries.

My oncology visit the end of December will be my first since my 5 year cancerversary. I will need to bring my oncologist a small gift of appreciation. I spoke to her during my last visit and she would like me to go into my 5 years with a clean scan. I was leaning on not getting that many scans because CT emits a great deal of radiation. MRI because I'm allergic to the gadolinium. I will get a scan done BECAUSE I trust her AND I know someone that found out she had a recurrence through a yearly routine CT scan. She had over 17 nodes involved! Imagine if she waited! She is only 3 years out but diligence paid off, especially because her oncologist doesn't really believe in scans. She fought for a yearly one and thank goodness she did! I think finding about her recurrence through me into a funk a I didn't really celebrate my 5 year cancerversary too much.

Birthday cake from Mad Cakes courtesy of my sister and Steve. Delicious!

I did have a rocking great birthday month though! On my official birthday I went for a jog at Town Lake, Shell and Nicole came by with cupcakes, met Cara for a late lunch and then gathered Deborah for Harry Potter. Beyond that I did a great deal of eating! Thankfully I didn't gain a lot of weight. I guess the braces and working out helps. I've taken a few indoor rowing w/CTTS and I like the variation. I've gone jogging a few times at Town Lake with my new sneaks and found it refreshing and okay on my knee. I've also signed up for Mamma Jamma 2011. I'm seriously thinking of 100 miles... :)

Co-birthday celebration with my "sis" Kelly at Sherlock's.
We jammed to Space Rockers, a silly cover band. She's the one my big head is blocking. :)
She is officially 366 days younger than me.

November 16, 2010 = 5 Year Cancerversary

November is always an interesting month for me. It's my cancerversary (month I was diagnosed) and it's my birthday. I always take a positive twist on it and celebrate LIFE and SURVIVORSHIP all month long. 5 years is an exciting yet scary time for me. It's exciting because every year post diagnosis without a recurrence is important. Every 5 years is even more important because typically a recurrence usually occurs within the first 5 years. Of course the work I do I know that there are no guarantees. I've seen too many women rediagnosed around 5 years. I cannot get complacent but I also can't live in fear.

At this point I have less than a year left of Tamoxifen. I'll be done with Tamoxifen prior to my 35th birthday next year. I officially get to stop it mid August 2011. I told my doc that I want a year break before we discuss further treatment.

My life is so different from when I was diagnose. I've changed my career, don't sweat the small stuff, single, new car (April of this year new because my 1999 Accord finally broke down,) new love for biking, braces (October of this year,) and my new family the Pink Ribbon Cowgirls.

Below is a quick recap of my life since September:




Mamma Jamma September 25, 2010 I rode 72 miles in 6 hours in 90+ degree weather and humidity. Throughout my ride I kept thinking about all the girls I've lost along the way. It's weird how it felt like they kept me company on my ride since I rode most of the way on my own. Many thanks to all my friends that donated. I was able to raise just over $1000 which was my fund raising goal. This ride was very important to me both physically, mentally and emotionally.

October 23, 2010 Support Crew Ride. A motorcyclist gave me a big bear hug.


November 7,2010 I participated in my 6th Race for the Cure, 4 as a survivor.

Scary Halloween

I flip flopped all month long about what to do for Halloween. My first year moving out from my parents I decorate and had a big bucket of treats but no trick-or-treaters came. I'm not usually home for Halloween but I decided to give out treats after speaking to a friend of mind last minute. Last minute like 5:32pm today. I slapped on my running shoes and jogged to my nearest HEB.

I was astonished at the bad ingredients in my beloved childhood candy bars. Most of them had hydrogenated oils and high fructose corn syrup in them. I will have to purchase my candy from Whole Foods next year and I really hope companies will start cleaning up their products.

Nutella used to have hydrogenated oils in it but it appears like they changed the oil. I'm uncertain how clean the new oil is but hopefully it is for the better. I actually do not buy Nutella but used to eat that as a child.

I really like how some people are giving out play doh, pretzels and other healthier and cleaner options. I will join them in the future if I choose to give out candy. Of course you can't be good all the time and you can't take Halloween away from your children. You can teach them about making healthy choices and about moderation of not so healthy stuff.

Think Before you Pink

October is breast cancer awareness month. I'm sure you've been inundated with pink ribbons, pink bags, pink cookies, pink, pink and more pink. I think it's wonderful to raise awareness but I also think it can be over kill for one month. Breast cancer should be on people's minds throughout the year as they schedule their yearly mammogram or remember to do their self breast exam.

I also know that other cancers feel left out and that is very unfortunate. Breast Cancer Action came up with things to think about before you buy for the "cause." I think money that goes towards direct services or funding is very important. The Mamma Jamma Ride is a great fund raiser that keeps the money here in Austin. A large percentage donated to an organization is also important. Of course ideally cleaner or safer products are ideal. I will eat some pink breast cancer m&ms though I also know that I'm also ingesting food colorings and such. Think before you Pink.

Before You Buy Pink

Pinkwasher: (pink’-wah-sher) noun. A company that purports to care about breast cancer by promoting a pink ribboned product, but manufactures products that are linked to the disease.

Critical Questions to Ask Before You Buy Pink

1. How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?

When the package does state the amount of the donation, is that amount enough? Fox Home Entertainment, for example, sold “DVDs for the Cure” for $14.95 and donated 50 cents to Susan G. Komen for the Cure. Is this a significant contribution, or a piddly amount? You decide. If you can’t tell how much money is being donated, or if you don’t think it’s enough, give directly to the organization instead.

2. What is the maximum amount that will be donated?

Many companies place a cap on the amount of money that will be donated. For example, Give Hope Jeans, sold by White House Black Market for $88, donated “net proceeds” from the sale to the organization Living Beyond Breast Cancer. But they’ve capped their contributions at $200,000. This means that once they had reached the $200,000 limit they stopped contributing, no matter how many pairs of jeans were purchased.

In some cases, that cap is a generous amount. In some cases it’s not. But you should know that, whenever there is a cap, your individual purchase may not contribute anything to the cause, depending on when you shop and whether the cap has already been met.

3. How are the funds being raised?

Does making the purchase ensure a contribution to the cause? Or do you, the shopper, have to jump through hoops to make sure the money gets where it’s supposed to go? Lean Cuisine, for example, had a pink ribbon on its boxes of frozen meals, but the purchase of the meal did not result in a donation to a breast cancer organization. Instead, consumers had to visit the Lean Cuisine web site and buy a pink Lean Cuisine lunch tote. Only then would $5 of the tote purchase be donated to Susan G. Komen for the Cure.

4. To what breast cancer organization does the money go, and what types of programs does it support?

Does the product’s package tell you where the money goes and what will be done with it? For example, Penn is selling pink tennis balls and the package states that 15 cents of your purchase will go to “a Breast Cancer Research Organization.” It doesn’t tell you which organization or what kind of research will be done. Will the money go to fund the same studies that have been ongoing for decades (which already get enormous financial support)? Or will it go to under-funded, innovative research into the causes of breast cancer?

If the donation is going to breast cancer services, is it reaching the people most in need, in the most effective way? The Breast Cancer Site store, for example, donates money to the National Breast Cancer Foundation, which helps pay for mammograms for women who cannot afford them. But mammograms are already covered for low-income women through the National Breast and Cervical Cancer Screening Program. Although this screening program does have limitations, what is most needed is the funding to get low-income women treatment if breast cancer is found. Click here to learn more about this issue.

5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

Many companies that raise funds for breast cancer also make products that are linked to the disease. Breast Cancer Action calls these companies “pinkwashers.” BMW, for example, gives $1 to Susan G. Komen for the Cure each time you test-drive one of their cars, even though pollutants found in car exhaust are linked to breast cancer. Many cosmetics companies whose products contain chemicals linked to breast cancer also sell their items for the cause.

Think before you spend your money on pink items. Download a handy PDF of critical questions, find out the real story behind where the pink ribbon came from, learn more about cause marketing and make a direct donation to Breast Cancer Action.

Who Owns Your Genes?

This article appeared in Self Magazine's October issue. My interview and involvement in this case is purely based on my own personal opinions and not any organizations I am connect with.


Who Owns Your Genes?

It's not you. And that matters.

By Ginny Graves

In November 2005, Runi Limary, a sixth-grade teacher in Austin, Texas, was diagnosed with invasive cancer in her right breast. "I was only 28, and I was in total shock and disbelief," she recalls. "I kept thinking the pathologist had made a mistake, that there was no way this was actually happening to me." Because she was so young, she wondered whether she had inherited a mutation of the BRCA 1 or 2 gene, which would significantly increase her risk of developing a second breast cancer as well as ovarian cancer. "I'd already decided to have my right breast removed, but if I carried the BRCA mutation, I wanted to have a prophylactic mastectomy on the left breast," she says. But her insurance wouldn't pay for the $3,000 gene test, so she opted to wait and see what happened.

Then in 2007, Limary switched jobs, and her new provider covered 80 percent of the BRCA test. "I was tired of worrying about every itch in my left breast," she says, so she ponied up her share for the blood test, and her sample was sent off to Myriad Genetics in Salt Lake City for assessment. The lab report revealed Limary had an unusual variation in the BRCA 1 gene, but Myriad couldn't determine whether it was a dangerous mutation or a benign, uncommon one. "When I got the results, I felt numb," Limary recalls. "I still didn't have any answers—just more questions." Understandably, she wanted another lab to run her blood work to get a second opinion. That's when she learned that Myriad is the only company that offers the BRCA test because it owns patents on the genes. "I was dumbfounded," Limary says. "I understand that companies take out patents on things they create, but it seemed really weird that they could patent something in my body—and everyone else's."

The United States government first granted patents on genes about 30 years ago to scientists who were able to "blueprint" the structure of a specific gene. Today, patents are attached to parts of about 20 percent of all human genes, including some that play a role in colon cancer and certain skin cancers. They last 20 years and are held by various private companies, foundations and universities, giving them the sole power to develop, administer and interpret tests for mutations. Many gene-patent holders don't fully reserve those rights for themselves; Myriad, however, is more restrictive. It doesn't stop outside researchers from studying the BRCA 1 and 2 genes for mutations, but they can't tell study subjects what they find. Moreover, four years ago, Myriad stopped sharing information with the Breast Cancer Information Core, an online breast cancer—mutation database sponsored by the National Institutes of Health. Without access to all of Myriad's data, scientists studying BRCA gene variants (like Limary's) outside the company can't fully interpret the results of their own research.

Myriad's monopoly on BRCA has also prevented genetics counselors and other clinicians from giving patients valuable information about their genes that Myriad couldn't yet provide. In 2006, researchers at the University of Washington at Seattle showed that Myriad's BRCA analysis was missing about 12 percent of mutations in breast cancer patients with a strong family history of the disease. "We could test for the missing mutations at our lab, so I contacted Myriad and told them we'd like to offer that to patients," says Ellen Matloff, director of Cancer Genetic Counseling at Yale Cancer Center in New Haven, Connecticut. "They said no, that they were going to offer the test once they'd completed their research. More than a year passed before they started offering it, now called the BRAC Analysis Rearrangement Test [BART]. We had to sit here that whole time knowing some patients had mutations that were being missed.”

Even today, Matloff says, Myriad's criteria for who should receive BART testing are too narrow: The company performs the test automatically and for free for people with breast or ovarian cancer who also meet other requirements, such as a strong family history of breast or ovarian cancer; patients who don't fit the bill often must cover the $700 cost out of pocket. But a study from Massachusetts General Hospital Cancer Center in Boston found that, of five individuals with mutations identified using BART technology, only one clearly fulfilled the Myriad criteria for free BART testing.

“I believe everyone who's getting BRCA testing also needs BART—it should be a standard part of the test," Matloff says. Myriad officials have said they're considering this possibility, but it's uncertain when it might happen.

Frustrated, Matloff joined the American Civil Liberties Union (ACLU) in a lawsuit against Myriad, along with 18 other plaintiffs, including patients like Limary, organizations like the American College of Medical Genetics and individual researchers. They argued that genes are products of nature and, as a result, can't be patented. This March, a federal judge agreed and ruled in their favor.

Myriad is appealing, but for now, any lab is theoretically free to offer BRCA testing. They could, however, be sued for patent infringement if the ruling is overturned—as Myriad and some patent lawyers believe it will be. "The patent system works," asserts Richard Marsh, executive vice president and general counsel for Myriad. "It takes substantial time and effort to do the research and development needed to bring genetic tests to market and to convince insurance companies to cover the tests. We spent more than $200 million on the BRCA test. Who would be willing to do that without a patent to ensure they'd eventually make a profit?"

And there is profit to be made, considering the BRCA test now runs $3,340. To be fair, all cancer gene tests are expensive, says Robert Cook-Deegan, M.D., research professor at the Duke University Institute for Genome Sciences & Policy in Durham, North Carolina. "There's also no consistent data showing that gene-patent monopolies affect test quality," he says. His issue with Myriad is its restrictiveness. "When you own the patent, you own the problem—it's your problem to make sure patients get access to your tests and research."

Limary decided to tackle her problem her own way. In 2008, she had a second, prophylactic mastectomy, and she plans to have her ovaries removed by the time she's 40. "I'm 33 now. I'm not eager to go into menopause, and I'd really like to have a baby someday," Limary says. "But unless Myriad's or someone else's research can shed light on my BRCA test results, I'll definitely have my ovaries removed. My health is largely in Myriad's hands—it feels really unfair to be in this position."

Myriad's patents on the BRCA genes won't expire until 2015, and it may be years before the gene-patent issue is legally resolved. "It could go all the way to the Supreme Court," says Wendy Chung, M.D., director of clinical genetics at Columbia University Medical Center in New York City and a plaintiff in the ACLU suit. She hopes dissolving Myriad's claims to the BRCA genes will allow her both to test her patients and to access Myriad's database to inform her own research on molecular genetics. "If the judge's decision is ultimately upheld," Dr. Chung says, "it will have a huge, positive impact on genetic testing and women's health."

Mamma Jamma Ride 9-25-10

Above is a pre training ride picture of Kathy and I at Mellow Johnny's.

I've been training all summer and I'm just 6 days away from my big ride. I'm so excited for this ride in so many ways. I blogged several months ago that the Mamma Jamma ride benefits 10 local organizations which is very powerful especially with our down economy right now. It's also special for me because it will be my first official bike ride ever. I've participated in the bike portion in a relay team in both the Danskin and the Sweet and Twisted this summer. They were both fun and great for team building but they were only 12 miles each.

I might sound crazy but I'm seriously thinking of attempting the 70miles. I KNOW I can do the 46 miles since I rode 61 miles last weekend. I may attempt the 70 and they can reroute me to the 46 if I'm too slow. Fingers crossed that will not be the case. All the variables will be important: temperature, wind, my energy level that day, hills and the pavement. I look at the weather and road so differently now. There are some roads that are not completely smooth but rather cobblestone like which creates much more friction which makes it much more challenging, even when it's flat. Learning that I can push my body and actually train for something is very exciting. I know the heat plays a huge mental factor. There have been two rides that I wanted to quit because I was hot and tired. When I think that I always tell myself that I've been through so much. I push myself because I have been through so much and I'm doing this for all the women that I've lost since I've been diagnosed.

Last year I used to think hardcore people that rode that much were nuts. Ironically I'm now "nuts." Nuts or not, I'm having so much fun meeting fantastic people at the training rides. Bill is our fearless leader organization the rides. The patience of my sweepers like Larry and Deborah makes me push myself at my level. Of course I've enjoyed it socially too. I have some cancer and noncancer friends in the training ride and it's always nice to spend time with them.

What I've also enjoyed about training for this ride is the support I've received from friends and family. I've mainly fund raised via Facebook because I hate sending out those emails. It's so easy to get bogged down by emails, etc. I've raised over $800 and I've sent out probably no more than 10 emails. I am overwhelmed with the love and support I've received. My old Pease family, old friends, people I've served (this is really special because it makes me feel I've touched their lives in a positive way and this is what the money is going towards,) Austin friends and family donate. How cool is that?

These are wonderful reasons enough to either ride, donate or volunteer, right? So do it! Click on the link! There's still time to do all of the above. You can donate to my page until end of October if you read this too late. And if you think you're too late? You're not! I would love to see you out there next year or donate if you're not in Austin. If you are in Austin, maybe Nutty Runi will attempt the 100 miles. I highly doubt it but having have cancer sure makes you a stronger person both inside and out.

Teal Toes

I apologize that my foot is not finely pedicured but it's Teal Toes time.

September is Ovarian Cancer Awareness Month. Ovarian cancer is called the silent killer because the signs and symptoms are easily confused as something else. Go to the doctor if these symptoms continue for more than two weeks:

• Bloating
• Pelvic or abdominal pain
• Difficulty eating or feeling full quickly
• Urinary symptoms (urgency or frequency)

Risk factors includes:

• BRCA1 or BRCA2 mutation (remember that I have a BRCA1 w/variant of uncertain significance)
  
• obesity
• hormone replacement
• aging

Great websites includes http://www.ovariancancer.org/ and http://www.ovarian.org/.

But I digress, I've painted my toes teals to help bring awareness. It's a fun way to bring it up when you're wearing it! A fellow ovarian cancer survivor shared Teal Toes with me. http://www.tealtoes.org/

Wear Teal and be proud! Raise awareness!