Jammed at the Mamma Jamma

October 1, 2011 Third Annual Texas Mamma Jamma RideCheck out our sweet looking jerseys! My second time as a rider and I rode 42 miles after I was afraid that I wouldn't be able to even ride 13!

We had one brutal summer. We had 90 days over 100 degrees! You can tell from the background of the above picture that the grass is dead. My only saving grace is that it was dry heat this summer so that meant no hot flashes from the humidity and it was the dry heat I was used too. The bad news of course was the major drought which caused one of the most horrible forest fires in TX history and also our overworked air conditioning.

I also was officially diagnosed with chondromalacia of the patella in May. I was uncertain if I would ever be able to bike again. I was finally told good news when I visited with my third physical therapist. She gave me some exercises and told me to shoot for 30 to 50 miles and I did! I was able to ride 42!

Blanca came in town and it was her first ride/run so she had a blast! The weather was amazing with the high in the late 80's and very dry. The volunteers, as usual, are the best.

The picture above are some of my current and past coworkers whom I adore!

And THIS is why I fundraise and why I ride. The above photo is my client who is currently going through treatment. Chemo has been challenging for her. I've been corresponding with her via phone and email. This is the first time we met in person.

The last day to donate is November 1st. Right now I'm just shy of my $800 fund raising goal. It's not too late if you would like for me to hit my goal!

**For confidentiality I blurred out her eyes.

Got Greens?

I try to make it back to New Mexico twice a year. This year was no exception. I was there for about a week in July and I always have a blast spending quality time with my nephews and friends back home.


My father and I have a ritual. He picks me up to the airport and we head straight to Sunflower Market to pick up my supply of fruits and vegetables for my green drink. I'm very fortunate that my family owns a Vitamix which is a high end blender so I do not have to go without my green drinks.


My sister isn't always consistent with blending with the boys because of their hectic schedule. I blend while I'm there and insist that the boys will have some of it, even if it's from a shot glass! I've learned that it's very important to go fruit heavy for them. The above picture is Ben, the 4.5 year old, that really enjoyed that green drink. I did add vanilla yogurt to that one and he LOVED it! He didn't seem to enjoy the ones w/o yogurt as much but drank it just for me. I'll take it!


Besides the occasional Greek yogurt and cheese, I've phased out dairy from my diet. I doubt I'll be hard core on that but I've found almond milk from Whole Foods to be a good alternative for me. I have not found a clean and/or tasty cheese alternative yet but this is a start.
Ryan, almost 9, is good at chugging things whether he enjoys it or not. They love their Aunt so bottoms up!
My last shameless plug to please consider donating to my Mamma Jamma ride October 1st. This picture was taken with Ben right before I left for the airport. My mom said he cried his little eyes out when I left. My sweet little nephews are growing up so quickly!

No More Tamoxifen!

I've been struggling with sleep ever since chemo treatment 5 years ago. It didn't get better while I was on Tamoxifen and the insomnia was almost my deciding factor to get off of Tamoxifen many years ago. It wasn't until the 4th year that it got increasingly better with a militant exercise habit and sleep pattern. I was down to just 5 weeks when I had 2 straight weeks of not getting quality sleep. I even tried a sleep aid for 2 days and it didn't help. I honestly believe in quality of life. I emailed my oncologist and she said she would be okay at me giving it a few more days and then stopping Tamoxifen if my sleep didn't improve. I slugged through 3 more days and no improvement. I've been off of Tamoxifen now for 5 days and have noticed better sleep. I still haven't had the most stellar of sleep but better sleep. I'm 4.5 weeks shy of finishing my 5 years. Remember that I added on a few extra weeks because I stopped it here and there prior to surgeries.

I'm happy that I'm off of it and I really hope just 5 short weeks will not make a difference in my chances of recurrences since I've been very good at taking it throughout those 5 years besides during surgeries.

The picture above was when I went to see the Davis Cup in July and I found it very appropriate for this post. Here's a big high five in hopes that my sleep, energy and everything else will improve post Tamoxifen and that here is LONG lasting benefits from taking it.

I'll be Jamming in the 2011 Mamma Jamma

This year's 2011 Texas Mamma Jamma Ride will take place October 1st. Last year I rode 72 miles on my mountain bike. This year I finally have a road bike but got a diagnosis back in May with eroded cartilage in my knee and a torn tendon and tear in my cartilage in my hip. After some unpromising visits to the orthopedic surgeon and physical therapist, I was uncertain if I was even going to be able to bike again without injuring myself further. I was pretty much down in the dumps about the prospect of ever doing much cardio again.

Because of strange twist with fate I ended up seeing a new physical therapist that was able to finally give me hope. I love my new physical therapist! I just rode 30 miles over the weekend and my body feels good. I have my eyes on 27 miles. I don't think I'll push it beyond that because when you think about it 27 miles is actually pretty decent. I don't want to chance my mobility. I've had enough surgeries that I do not need to add knee or hip to my list.

Please consider donating towards my ride. I strive to help others and promise to continue to work hard to make a difference in the lives of others touched by cancer. Can you skip your next latte? Even $5 makes a difference. Many thanks in advance!

Notes from the FORCE conference June 2011

6^th Annual Joining FORCES Against Hereditary Caner

Conference on Hereditary Breast & Ovarian Cancer 2011

Communicating with Family Members

• Family communication is important because it helps family members make informed choices for themselves; people are more apt to pursue testing
• 1. Start off w/objective information from doctors and genetic counselors, 2. find the right words 3. Figure out when and where to tell 4. Who to tell before and after testing
• Possible negative emotions as a reaction to risk information; avoid conflict by communicating directly, do not keep secrets and individuals should feel supported but not overwhelmed by loved ones and their involvement in what is going on

Hereditary Cancer Research Update

• MRI is far more superior than mammogram but bilateral prophylactic mastectomy (BPM) is the most superior of them all
• No further breast surveillance is needed after BPM, best reduction of breast cancer
• Age 35 to 40 for prophylactic salpingo oopherectomy (PSO) for the prevention of both breast and ovarian cancer; surgical menopause is more superior than natural menopause (30% of circulating estrogen w/natural menopause)
• HRT seems safe studies showed no significant increase in breast cancer
• Oral contraceptives prior to age 20 seems to increase risk of breast cancer but no data support if taken after 20
• Lumpectomy 10 year follow up no benefit w/mastectomy but after 10 years better survival rate with a single mastectomy and almost no cancer event after a BPM; apparent benefit of BPM after 10 years
• BRCA+ with early stage breast cancer for those node negative and less than 2 cm would benefit from chemo studies showing after 15 years higher survival rate

Ovarian Cancer Risk Management

• Prevention 1. Nutrition of Mediterranean and anti inflammatory diet 2. BMI higher than 29 causes extra circulating estrogen 3. Exercise lowers the circulating estrogen 4. Less stress because more stress lowers the immune system 5. Vitamin D increase 6. Oral contraceptives for 5 years can give 10 to lifetime worth of protection 7. Child birth and breast feeding
• HRT showed no risk of breast cancer but only improved quality of life; HRT should only be offered if there is no history of breast cancer
• After PSO no conclusive studies for surveillance besides CA 125/ US not needed
• No data to support removal of just the fallopian tubes because it can cause disruption of blood supplies that can cause cysts
• NCCN guidelines to consider transvaginal US and CA125 every 6 months starting at age 35 or 5-10 years before earliest age of 1^st dx of ovarian cancer in family though no evidence that ovarian screening for high risk women is effective
• Risk of Ovarian Cancer Algorithm preliminary data shows cut off for CA125 should be 50 rather than 30 for pre-menopausal women
• Single use of CA125 may not be helpful but use of it long term can be helpful to look for spikes
• CA125 the best tumor marker though there are ongoing test for HE4
• Surgical protocol should include 1. counseling, 2. consider consent for definitive staging surgery if cancer is found, 3. laparoscopy with examination of upper abdomen and pelvis, 4. biopsy of suspicious areas, 5. complete removal of both fallopian tubes and ovaries, 6. consider peritoneal cytology, 7. pathologic microsectioning (2-3mm) and 8.examination of entire ovaries and fallopian tubes
• Advantage of including hysterectomy is that it ensures removal of all the fallopian tubes, simplifies hormonal management (progesterone will not be needed,) decrease risk of endometrial cancer, use of Tamoxifen can increase risk of uterine cancer
• BRCA 1 surgery by 40 and BRCA2 by 45; oopherectomy after menopause is not associated w/decrease in breast cancer

Young Previvors: Medical and Emotional Issues

• Must give time to reflect, state the problem, be objective, find alternatives, figure out consequences and tradeoffs
• Must find support system while making decision
• Face dating, marriage and intimate relationships which can include fertility
• Fertility options: adoption, sperm sorting for male and preimplantation genetic diagnosis
• Relationships w/other relatives of guilt over a true positive or negative and previorship or survivorship
• More media on heredity cancer which can be either positive or negative

Internet

FORCE – www.facingourrisk.org
Among many other valuable resources and opportunities to form connections, FORCE has an online forum for young previvors. In addition, many local chapters have a young women’s group.

Bright Pink – www.brightpink.org
Bright Pink strives to enlighten and empower high-risk individuals to take control of their breast and ovarian health by providing education, support and a sense of community for a better, brighter future. Their PinkPal Program is a one-on-one supportive resource for young women at high-risk for breast and ovarian cancer.

Sharsheret – www.sharsheret.org
Sharsheret is an organization supporting young Jewish women and their families facing breast cancer by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources. Their Link Program connects young women at high risk of developing breast cancer with volunteers who are similarly at risk and have offered to share their own experiences.

BRCA Umbrella - brcaumbrella.ning.com
BRCA Umbrella is an online support group community bringing together those at high risk for breast and ovarian cancer and providing a space to share information and personal stories.

Facebook: BRCA Sisterhood – www.facebook.com
This Facebook group of almost 1,000 members provides an opportunity to connect with other previvors and survivors, ask questions, read what others have posted, and find support.

Books and Media:

Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene by Masha Gessen. Boston: Houghton Mifflin Harcourt, 2008

Eating Pomegranates: A Memoir of Mothers, Daughter, and the BRCA Gene by Sarah Gabriel. New York: Scribner, 2010.

In the Family. by Joanna Rudnick. Chicago: Kartemquin Films, 2008

Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi L. Morris and Ora K. Gordon. New York: Prometheus Books, 2010.

Pretty is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny by Jessica Queller. New York: Spiegel & Grau, 2008.

Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port. London: Penguin Books Ltd, 2010.

What We Have: One Family’s Inspiring Story About Loss, Love, and Survival by Amy Boesky. New York: Gotham Books, 2010.

Resources:

MRI Financial Assistance Program for young women at risk of breast cancer through Right Action for Women which is a Christina Applegate Foundation. Women must be 45 or younger w/family history of breast cancer or tested positive for BRCA mutation. Any women meeting these criteria are qualified to apply, regardless of insurance status. Call Patient Services Inc at 1-800-366-7741 to get a program application. The amount of assistance granted is determined based on the financial need.

Other helpful links through Christina Applegate’s Foundation www.rightactionforwomen.org

Informed Medical Decisions will do genetic counseling over the phone. They will accept insurance but $375 w/o insurance.

CLRC is Cancer Legal Resource Center 866-THE-CLRC or www.cancerlegalresourcecenter.org

Negative BRCA Test www.negativebrcatest.com to learn more about a negative test result. $100 per hour though

Some Big Guns

Wow, this picture makes me look really overweight. LOL! Maybe I should have cropped it to waist up? Well, I'm working on it. Can we say that the camera adds 10 lbs so it really looks like I'm 20lbs over my college weight? Sigh... I'll explain why I'm using this picture. Just keep reading.

Anyway, I digress. The above picture was taken at Universal Studio in Orlando. I was there for the FORCE conference and arrived a day early to check out Harry Potter. FORCE stands for Facing Our Risk of Cancer Empowered which is for hereditary breast and ovarian cancer. Back in 2007 I finally got tested for the two known mutations to cause breast and ovarian cancer. This test would help me decide whether or not to have a prophylactic mastectomy. A positive result of the BRCA1 or 2 gene will increase risk of cancer in the other breast and ovarian cancer. My test came back inconclusive. I was BRCA1 with a variant of uncertain clinical significance. This means I may or may not have the gene. This variant was seen in a total of 3 Asians (I'm the third) making it a small sample population. This is the reason why I'm a part of the ACLU vs Myriad case because Myriad, the company that does the testing, holds a patent on the BRCA1 and 2 genes. No further testing can be done until the patent is uplifted. There for no further testing of my variant to truly know if I'm positive or negative. If you recall I've been treating myself like I'm positive for the mutation.

I meet some big guns at the conference. 1. Dr. Steven Narod is the Canada Research Chair in Breast Cancer in Toronto. He works in the Familial Breast Cancer Research Unit. I was fortunate enough to have some one-on-one time with him and ran my situation through him. What he told me surprised me though it's something my current oncologist and gynecologist have been telling me: It doesn't seem as if I have the BRCA1 mutation. I love my oncologist and it's not that I didn't want to believe her but I guess I'm in such a proactive mode that I would err on the side of being precaution. Dr. Narod said that most variants of uncertain clinical significance is negative. My family history isn't strong enough to convince him that I'm positive. (Even with my mother's mysterious family history.) 2. Dr. Karen Lu is at MD Anderson in the gynecologic oncology unit. I also ran my scenario by her. She doesn't feel as if I have the mutation either, even with my mother's mysterious family history. Though my mother had a hysterectomy about 15 years ago and who knows if that lowered her incident? We will never know. 3. Dr. Diljeet Singh is the Co-Director of the Northwestern Ovarian Cancer Early Detection and Prevention Program in Chicago. She doesn't see me as a clear BRCA1 mutation.

So..."I feel as if there is a cloud over my head." I really want to know for sure but I guess we won't know for sure, at least anytime soon with the patent in place for another 5 years and the entire case can take up to another 4 years. I guess I feel some relief but the key word is some.

I spoke more with Dr. Lu because my oncologist wants to do something with my ovaries since I'm estrogen receptor positive. Dr. Lu said the ovary removal or suppression would be to treat me for a breast cancer recurrence NOT ovarian cancer. I have the same risk as anyone else out there to develop ovarian cancer. She recommends medically induced since it's reversible like Lupron to shut down my ovaries temporarily.

I will post notes from the conference once I write them up.

One More Bottle

The count down is one! I officially paid for my last bottle of Tamoxifen and it comes with a three month supply. So...this is my last bottle. I finish up end of August and I can't wait!

Today is also National Cancer Survivors Day. I am so thankful my original surgeon decided to just remove it since it doubled in size in just a few months even when my mammogram and ultrasound came back negative. She's the one that caught my cancer at stage 1. I am so thankful for my oncologist who came to meet me on her day off and that I think I was one of her younger patients when she first started being an oncologist. 5 years ago this month I finished up Taxol, a type of chemo. I've come a long way baby!

So today I also think about all the women we've lost along the way and so thankful to spend time with those that are still here with us.