Diagnosed w/Breast Cancer at the age of 28

2012

2012-01-04T20:34:00.000-08:00

I decided I don't like the concept of New Year Resolutions because I believe balance of happiness, exercise, nutrition, and all the obvious are really just well...obvious! Instead these are my hopeful goals of 2012:

1. Guitar class
2. Cruise of Western Caribbean
3. DC for a conference and to meet up with an old friend that I haven't seen since 1997. (Never been to DC either)
4. Swim in 6 feet pool
5. Get my braces off!
6. Complete my professional development hours to renewal my teaching certificate
7. Get accepted to Project Lead

I'm sure I'll have more to add but I thought of these this morning while drinking my green drink.

Recap of a Whirlwind December 2011

2012-01-01T07:45:00.000-08:00

Happy New Year! December really was a whirlwind. It had many ups and downs and so much so that they were two opposite extremes. I'll start with the downs and end with the ups since my old tennis coach always told me to end on a good note.

Downs:

A 34 year old passed away in December from breast cancer and her entire diagnosis is rather complicated and somewhat confusing. Regardless of that, she left behind a family and an entire community of friends that will miss her dearly.
A friend of mine had to put down her 10 year old dog that she loved dearly.
Another friend found out her mom won't really benefit from standard medications so will try complimentary alternative medicine for her cancer/pain.
Another gal spent Christmas in the hospital because she had brain surgery and her wound was not clotting.

Ups:

I got to meet Andy Roddick! He's even cuter in person and is such a nice guy! He let us take a picture of him and he could have easily said no to it. I tweeted him the picture and thanked him again saying I'm a hug fan. The picture is us at the Tacky Sweater Party. I was there with Kelly and Kathy.
I went back to my old stomping ground Pease Elementary a few weeks ago to bring them some holiday snacks and lunch for my former work husband, Nick. I love those guys and was able to chat with most of them during their lunch break. The biggest highlight of that visit was that my former sixth grade student, Daniel, is now 20. He's a part time childcare teacher while going to school to become...a SIXTH grade teacher! He saw me in the lounge and told me he had something for me. He handed me a Bobcat Bulletin which is their school newspaper. I did the Bobcat Brief with them! Craziness is that we both have the same car but his is silver and mine is gray. For the longest time he always wanted my car, Honda Accord, and to drive a stick. I went home that day to check my teaching certification because seeing how much I impacted Daniel made me continue to realize that one person can and do make a difference.
Quality time with my nephews! I had such a great time with them this summer and this December. We have many funny memories to share that would take too long to explain. One quick share is that I had the radio on and LMFAO song "Sexy and I know It" was on. Ben asked me what sexy meant. I told him to ask his parents. His father told him that it was his Aunt and Grandma. Very sweet. Ben kept singing "Sexy and I know it" in the restaurant.
Quality time with old friends in NM. I pretty much got to see all my good friends from high school and college. There were a few exceptions but I still love them all none the less. I was able to see the group above for tea at the Dunlap's new house. Photo credit to Justin. I was able to catch up with Paul at Flying Star. Ironically I ran into someone from Austin at Flying Star! It really is a small world. I also got to see Mary Ann, Alicia and Sue again on my last night at Flying Star. It made me realize that the reason I love Flying Star so much is that I love the countless hours of bonding with my friends there throughout the years.
Sammy made it to another Christmas! The poor guy wasn't doing well back in September. It got to a point where he couldn't get up by himself. He has both arthritis and neurological problems. Thankfully meds have helped with his quality of life. We're taking it day by day but the vet does not think he is in pain and he's able to get up by himself again. It might be his last Christmas but we're spoiling him rotten. As it should be because he deserves it.

I was able to end 2011 with my friend Michelle. She had a NYE get together at her house. It was fun catching up with her, playing trivial pursuits, watching fireworks and then ringing in the 2012. No resolutions for me this year. I'm looking forward to some traveling, balance in my life and spending more quality time with friends and family. So Happy New Year and hoping for happiness and good health to anyone reading this!

My New Hair Cut

2011-12-09T17:05:00.001-08:00

Here you go! This is my before picture:

This is my after picture. Remember that I'm growing out the back to donate to Wig for Kids. It requires 12 inches so most likely I'll grow it out for two more years since I don't want my hair to be super short after it is cut. 12 inches is long so hopefully I'll continue to be patient.

Gene Patenting Case Update

2011-12-07T08:38:00.000-08:00

Just a quick update that ACLU will see if the Supreme Court will take the gene patenting case of ACLU vs. Myriad on the patenting on BRCA1 and BRCA2. More info here.

35th Birthday Birth Month

2011-12-04T07:30:00.000-08:00

What a great birthday celebration! As of last year, I decided that I 100% believe in celebrating all month verses one day. Don't we all deserve a month? Also, it is less stressful for friends and loved ones to try to celebrate on that exact day or if they forget and wish you a belated birthday. My birthday is usually close to Thanksgiving or on Thanksgiving so I'm not about to compete with a national holiday! We kicked things off by listening to a local cover band in Austin the Skyrockets which are always great fun. We had a fantastic turnout and I think everyone had a great time singing and dancing! Nothing beats spending time with your favorite people!

I stayed out much later than I've stayed out in ages. I had only one glass of wine but was dragging the next day. Most be how 35 feels like? Ha!
This is Kelly and she's my twin sis. She's 366 days younger than me and she'll never let me live it down. I tell her I'm 366 days wiser.

This is the dessert that broke by 2.5 months without a real dessert or processed sugar. My sister and brother-in-law took me out for my birthday to La Condesa. This is a moist flourless chocolate cake with a little kick in it. The top had the creme brulee crust and so did the plantains. The ice cream on top was banana. The cake itself wasn't too sweet and it was still hot out of the oven. The cold and sweet ice cream complimented the dessert perfectly! We finished it off with dark and bold decaf french press coffee. Yum!

On my actual birthday I took the day off of work and went to the gym, saw my acupuncturist, lunched at Steeping Room (make reservations from this point on,) Twilight's Breaking Dawn and then dinner at Brick Oven with friends. I also got tons of calls, texts, emails, cards and Facebook messages so I felt pretty loved. I even got a text from an old friend that I'm not too close with anymore. It was such a pleasant surprise!

I'm now 35 and it's crazy to think that I'm actually 35. Cheers to 35 and another wonderful year!

Recap of my 6th Year Cancerversary

2011-11-26T22:14:00.000-08:00

I saw this in a Time magazine recapping the 10th year anniversary of 9/11 and it really resonated with me. I can't begin to imagine how those that were directly impacted by 9/11 (lost a loved one, actually at the Trade Center, got hurt, etc) feel even 10 years later but this is how I feel about my cancer diagnosis.

November 16, 2011 marked 6 years since I was officially diagnosed. Mentally/emotionally I feel pretty good. Physically I feel okay too. Last MRI and all other blood work is showing NED and that I'm pretty healthy besides my knee. I really celebrated last year being year 5 but this year was different. It was almost as if I didn't want to jinx myself. I work with cancer all the time but I hardly feel or talk about mine. I would say I've adapted very well BUT 11/16/11 made me feel wiggy about it. Talking to my long time pal, Paul, really helped. It's crazy because most people see me as shiny happy AND I am shiny happy about 95% of the time. I'm learning to really lean on my friends for those 5% of the time and my friends that have not been touched by cancer too. It's nice to get support from both and you get different perspectives too.

So I didn't celebrate 11/16/11 but I still plan on getting my hair trimmed. Most importantly I'm okay. It (cancer) still stays with me but I've moved forth and I'm okay.

Hail to Kale!

2011-11-13T14:21:00.000-08:00

I found a local product that I'm just geeking over. Rhythm Superfood is made in Austin and they have it at both Natural Grocers and Whole Foods for about $5. I bought this Mango Habanero and it is amazing! I've made my own kale chips before but these are to die for! I've also bought their Cool Ranch flavor but the Mango Habanero is my favorite. The bag is two servings but you almost want to devour the entire bag. It's organic and you get a good dose of vitamin A and C as well as some green goodness. Two enthusiastic thumbs up and something you may want to try if you usually can't stomach kale.

Besides kale chips, you can use kale for green drinks, salads and saute as is or with other ingredients like eggs. Just remember to buy organic when possible and eat or drink up! It's a major powerhouse in nutrients!

My Review of 50/50

2011-10-27T20:21:00.000-07:00

I went to see the movie 50/50 a few weeks ago with fellow survivors and a friend. Overall, I feel the movie did a good job portraying a 20 something young adult going through a cancer diagnosis and treatment with only a 50/50 percent chance of beating the cancer. The movie left out some key issues which no film can address every issue but they left out big ticket items. They did not touch basis on finance, insurance and work which are big issues not to cover. What they did cover were more of the emotional side of things like the emotional shock of the diagnosis, death, dealing with a challenging mother, abandonment, anger, dating and his friend. Humor, both appropriate and inappropriate, were sprinkled throughout the movie. For other young survivor this will most likely hit too close to home even if they did leave out key issues young survivors faces.

I'm almost 6 years out of my diagnosis and I have to admit that my eyes were red and swollen by the end of the movie. I didn't think any of my friends left without shedding a tear. We may not all have the happy ending but we all deal with hearing the words, "You have cancer" which makes all of us with cancer the same even if we all have our own stories and all have our own journeys.

I love this quote which goes with the picture above. Katherine the therapist: "You can't change your situation. The only thing you can change is how you choose to deal with it."

6th Cancerversary

2011-10-23T12:47:00.000-07:00

November 16, 2011 will mark my 6th cancerversary, the day I was diagnosed. Now that I've reached the big 5 years, I'm uncertain how to feel about it. I know that the further I'm out the better but I also know that my HER2+ status doesn't make me immune. I also know that each time I ride my bike or drive in Austin doesn't make me immune to getting hit but maybe I'm being dramatic.

My hair is about the length it was when I was first diagnosed. Wow, I guess that is pretty much the only similarity I have from my November 16, 2005 life to my current life. I've been wanting to grow out my hair to donate it. I think I'll celebrate my cancerversary this year by getting long side layers again. This should still allow me to donate my hair when I'm ready.
I hesitated a little getting long layers because my sister that moved to Austin a few years ago has bangs. She is constantly getting mistaken for me and vice versa. I think it's worse for her because I've lived in Austin longer and know more people. At the first Mamma Jamma she kept having people come up trying to hug her thinking it was me. I think it's rather comical but will be celebrating the big 6 years with a hair cut. Cheers!

Jammed at the Mamma Jamma

2011-10-16T15:31:00.000-07:00

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?

2011-08-28T16:17:00.000-07:00

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!

2011-07-31T16:24:00.000-07:00

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

2011-07-11T16:01:00.000-07:00

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

2011-07-11T15:58:00.000-07:00

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

2011-06-28T15:23:00.000-07:00

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

2011-06-05T15:59:00.000-07:00

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.

Changed the title of my blog

2011-05-22T10:03:00.000-07:00

As of May 22, 2011 I've changed my blog from Conquering Cancer to Diagnosed w/Breast Cancer at the age of 28. There are several reasons for this change. I find survivorship, especially in younger people, to be more challenging sometimes than the actual treatment. During actual treatment you're on the go on the go. It's post treatment where you have to access your "new normal" and every ailment needs to be taken seriously. Of course every ailment is now blamed on my chemo and Tamoxifen.

Here's a little update on my health. January MRI showed no evidence of disease which is fabulous. My tentative BRCA mutation is always in the back of my mind too. My last ultrasound back in October showed cysts but nothing of the ordinary. My tumor marker CA125 came back low too.

All these are wonderful news in the cancer world but I was still having pelvic pain on the right side and my knee still wasn't right since I started training for the Danskin last spring. I finally went to PT and they thought it was my IT band. After a few sessions and me testing it out by running on it but we still got swelling I was ordered an MRI. (Thankfully w/o contrast.) I saw my oncologist and complained about my pelvic pain. She ordered another pelvic ultrasound (the first one this year) and ordered an MRI of my right hip. She did say it, but I'm sure she thought it could have possibly be mets to the pelvic bone.

Two MRI's and an ultrasound later I was diagnosed, thankfully not cancer, but something possibly debilitating. I have grade 4 (just like cancer there isn't anything higher than 4) chondromalcia of the patella. It's the medial term for bad cartilage of the knee cap. Basically I have bone on bone. My right hip shows a probable tear of my labrum which means I have a torn cartilage in my hip. I also have some tear in my side muscles in the hip. My ovaries shows cysts but nothing out of the ordinary.

So...that's a lot of information. Grade 4 chondromalacia of the patella is bad news. No more running or high impact exercises for me. I went swimming this weekend and experienced some swelling. I think I need to do no cardio for a few weeks and then try out swimming and cycling again. It seems as if I can cycle but I'll need to modify and probably cycle less and shorter distances. Besides that and more PT, I have few options. Knee surgery is the last option. I can have cortisone shots but I rather wait on that too. I'm even more serious about losing those last 10 lbs that I gain from chemo/Tamoxifen. A knee brace may help too. So today I'm off the gym but to do upper body machine weights only. Yes, all this is crappy news for a 34.5 year old but I have to stick to my proactive mind frame as what I did for my cancer diagnosis. Same thing with my hip. PT is the best thing for it and hip replacement surgery in the future at the worse case scenario. Thankfully I spoke w/ a friend and she said her dad recovered well from it.

I do feel broken. There are many factors that may have contributed to this but I always think: did chemo/Tamoxifen make me more suseptible to all this? I'll never know but I know this is common in athletes. I'm not sure if I call myself and athlete but I am active. I'm sure my sprain knee when I gain all that weight after treatment didn't help or when I fell on it biking or my days of running or my ill fitted mountain bike. Women in general are more susesptible to it because of our wider hips. I never had a baby but I do have birthing hips. Anyway, I'm not going to go there. Hindsight is hindsight. I can only move forward and things can always be worse. Remember to treat your body like a temple!

Post GRAPHIC V Art Bra Runway Show 2011

2011-05-04T20:06:00.000-07:00

GRAPHIC V was April 23, 2011 this year. This is back stage of the girls before the show. Don't they look like they are having a blast? I'm so proud of them and so proud of them for making the Pink Ribbon Cowgirls a successful networking group for young women in Austin!

This is my model wearing my Napa Valley bra that made the runway this year! Woohoo!

I'm like a proud mama! This is my Pink Ribbon Cowgirl!

This year was smooth, fun, empowering and about strength. I'm so proud of all the committee members that put so much work into this.

Fear

2011-04-10T15:05:00.001-07:00

The more I think about it, the more I realize that I have many fears. I think my fears developed from growing up in a strict Asian family. I grew up fearing I would shame my parents or not live up to their expectations. My mom was a lot like Tiger mom though she didn't have the education to tutor/torture me herself.

Of course I fear a recurrence. I Have 4 months left of Tamoxifen and I'm so excited and so nervous at the same time. But besides diet and exercise, there is very little that we know that I can proactively do to minimize my chances and I'm all about being proactive.

A huge fear I've had since childhood was a fear of the water. All I remember was that I was young and in my life jacket but left out in the open water by my cousin. I don't talk about that story with my family so I'm not sure how much of it is valid or if my memory dilutes it. Anyway, having so many new girls getting recurrances was another good wake up call. Four weeks ago I started taking swim lessons w/CTTS' Jimmy. I was told by all the girls that Jimmy was the man. After four lessons I am still scared of the water BUT I'm feeling much more comfortable in it and backward swim isn't so intimidating.

Fear can be a good thing and it can be a bad thing. Fear can be a great source of motivation. I hope next time I can report that my fear of the water is decreased even more!

My Heart

2011-03-29T20:15:00.000-07:00

I decided to see a cardiologist this year. I saw a peer collapse after she had Adriamycin, a type of chemotherapy, twice and known to cause heart issues. I also had Herceptin which is a targeted therapy but can also cause heart problems. Finally I have family history of hypertension, cholesterol and diabetes.

I actually put off seeing my cardiologist for a few months thinking she would dismiss me and think I am just paranoid. Luckily I either hit the jackpot with a great doctor my oncologist recommended and/or I plead a good case. I hope it is both. I told her my story and she said it was a good idea to get a baseline look at my heart post treatment. Besides my MUGGA scans from Herceptin I never had a post heart function. She never told me that she felt Adriamycin was dangerous or that is why it made my peer collapse but the look on her face was telling enough. I thoroughly enjoyed my visit that day because the nurse that saw me before I saw my cardiologist seemed quite fascinated about my ovarian ablation/suppression question and even asked to be in the room while I spoke to the doctor.

Besides my family history of heart disease and my past drug infusions, I wanted to discuss my future of possibility of ovarian suppression or ablation. There seems to be a connection that your hormones protect you from cardiovascular problems. My cardiologist did not know of clear studies verifying that. Besides eating right, exercising and taking omega 3, she recommended one or two servings of alcohol a week. Of course this made my eyes wide since too much alcohol can raise estrogen and have been known to have a higher incidence of breast cancer though moderation does not seem to be a factor. I think I'll stick to my one or two glasses a month and not feel guilty.

She wanted me to have an ECHO of my heart. I've linked it for you so you can read about it rather than me try to explain what it actually does besides an ultrasound that examines the heart. Anyway, I had it today and the EF normal range for my age is 50 to 70 and I'm at a 60%. Overall everything appeared normal for my age! The nurse that told me the news was excited as I was and we both knew that the Adriamycin was what worried us both. I now have a cholesterol test. If all goes well I go for a yearly or biyearly checkup. If it's high I go back in to see them.

This is fantastic news because both my parents have hypertension and high cholesterol. I also have two siblings that have hypertension. I've been on enough medication that I am looking forward to being healthy and drug free once I finish Tamoxifen this August. Yes, that is right, August! (Technically end of August but close enough)

So, I guess I need to have a toast to my green drinks, working out and overall healthy eating. I'm not out of the woods yet. I know genetically I am predisposed to heart disease but at least I know I'm at an equal playing ground with the average Joe event post treatment!

Art Bra round 5

2011-03-17T12:48:00.000-07:00

GRAPHIC 5 is April 23rd so just a little over a month. I wasn't very motivated to do one this year and really couldn't figure out a theme that would be easy enough for an unskilled person to create. I wanted to do a space theme but wouldn't have been able to pull it off. It wasn't until late last month that I was inspired to do a Napa Valley bra. My bra is in memory of all the fallen Cowgirls and in honor of the rest of the Cowgirls. Seeing so many stage IV and those with recurrences made me want to do another bra this year. It's now a tradition for me and I don't want to break it.

Carrageenan

2011-01-24T17:58:00.000-08:00

So I'm back to my dairy debate of to consume or not to consume? I recently heard that carrageenan is found in many dairy alternative drinks like almond, rice, soy, etc. Those that don't have it tend to be high in sugar which is something I also try to avoid. Back to carrageenan: It's extracted from a red seaweed and is an emulsifier in foods.

I've heard mixed reviews about it. Some places claim it is fine and FDA approved. I also read that injected w/saline underneath an animal skin it was also carcinogenic. Granted that is in high doses and directly into the blood system but we all know how little things can accumulate over time. I've also read that it may have MSG and cause allergies in people?

Because of all the unknowns I think I will stay away from them. Unfortunately my coconut milk that I like to enjoy on occasion contains it. I haven't been researching this too long but the Whole Foods Almond Milk pictured below does not contain it. I think Rice Dreams do not either but it is higher in sugar.
Here's a list of the ingredients:
Of course I just Googled Tricalcium Phosphate and there seems to be iffy research about that too.

So...it might be the best option to stick to organic milk or make your own almond milk but blending almonds with water in a high power blender and then strain it. I think I will stick to organic milk for the time being. Of course, I plan to drink my almond milk from Whole Foods but think I'll do more research before consuming carrageenan or tricalcium phosphate.

NED!

2011-01-17T21:04:00.000-08:00

Just a quick post that my MRI prep worked and I showed no signs of allergic reaction! Woohoo! Also, results showed NED No Evidence of Disease!

It's 2011!

2011-01-09T22:07:00.000-08:00

Happy New Year! I have so many random things on my mind that I want to put down.

I'll start with my time back home in New Mexico.
My father will need surgery for a torn meniscus. Apparently his knee was bothering him since summertime so right after my summer trip. He chose not to go to the doctor because he was scared he might have to have surgery. He lived in pain for about 6 months because of his fear! I scold him and my family in NM. I'm a perfect example of getting to the doctor to have things checked out. I could have easily been diagnosed at a later stage if I didn't pursue further testing with my cancer.

My mom's blood work came back and showed high cholesterol, high blood pressure and she's pre-diabetic. Diabetes runs on her side of the family. My uncle died from it. Of course all this puts me at a higher risk too. At least I know so I can do what I can now to offset it. My mom is retired so there's no excuse for her to exercise and eat right. They own a treadmill and a stationary bike.

They eat fairly healthy but they need to manage their refine carb intake and their knowledge of nutrition. My parents both eat a high carb breakfast. My father had toast and jelly one morning. Thankfully I finally got them to switch to whole wheat bread last year. I asked him why he didn't put a nut butter on it. They apparently do not have nut butter in their home. I explained to him that protein is vital and it helps slow down the insulin spike of carbs. They have a Vitamix but do not blend consistently. They drank my green drink when I was there and urged them to blend daily to help get their nutrients and fiber. I also noticed some fat laden muffins in their refrigerator. They were the store bought kind that was too large to be one serving size. My parents struggled when they first came to the States so they are very economical. A 12 pack of muffins would be much more economical than purchasing one muffin in their mind. Hopefully they listened to my thought of purchasing only what you need/want in desserts even if you have to pay more per serving. This limits temptation when you're at home but they still get to enjoy the occasional desserts.

It is difficult to see them get old. Technically they are not old, they are only in their 60's. They seem so old though, especially my dad. I'm glad my siblings are there to help them.

Besides that, I had a wonderful time in NM. It was busy catching up with some old friends but the bulk of the time was spent with Ryan 8.5 years old and Ben 4 years old. For the first time no tears were shed! They really are growing up!
It was so great seeing Sue. She's my friend that is in the mist of uterine cancer. Thankfully she did well through the first half of chemo. She's on a break to do radiation and it seems as if this is much more of a challenge for her. I think she'll be done with radiation soon and then she'll finish a few more round of chemo. I know she's surrounded my loved ones in NM so I'm so grateful for that.

Sugar Overload!
I've always believed in eating well so it was okay to have my occasional dessert, my 80/20 rule. Between my birthday in November and holiday snacks in December I was no longer 80/20. I was having desserts just about everyday. I'm back at home in Austin and decided to go back to basics: Raw desserts! The first week I made dehydrated "oatmeal" raisin cookies made out of sunflower seeds, bananas, apples, raisins, maple syrup, vanilla, cinnamon and walnuts.

Week two I made a pineapple-cashew-date pudding out of pineapples, tahini butter, cashew butter and dates. It actually came out too sweet. I'll use less dates next time. This time I'll just mix it with plain yogurt. It wouldn't be considered raw but it will still be a healthy alternative.I think I will make a mango pudding next weekend. The cookies required a lot of work with my low end dehydrator. It was given to me and I love the fact that it was free and it will help me decide whether or not I want to upgrade to the Excalibur dehydrator. It's what raw foodist uses and comparable to a Blendtec or Vitamix as a blender.

I need to make a raw dessert each weekend, just like how I make one big meal over the weekend to last me for several meals. The more I prepare the better. What I really like is how it's mainly nuts and fruits. I know it's important to eat fruit in moderation too but it's a much, much healthier alternative than baked goods with tons of refined sugar.

Meal Planning
So I "won" a WTF Did Sarah Palin say calendar in a white elephant. Besides getting a few good chuckles, I decided to use it to plan my meals and dessert. I'm a visual person so this is perfect. I hope this will give me a variety of nutrients as I vary my main meals each week.

Exercising
I do not believe in New Year's Resolutions. I believe in a lifestyle. I've always been pretty good at getting 3-5 days a week of exercise whether it be intense or leisurely. So far I've worked out 8 out of 9 days in 2011. I think I'll like to aim for spin class and yoga at least once a week and then mix that with weights and other form of exercise.

It's 1 am and I'm starting to fade. Just a little over 2 more hours to go before I can take my Predisone for my MRI prep and finally get to bed.

MRI Prep

2011-01-09T21:48:00.000-08:00

Routine MRI tomorrow. I have to do prep work since I had an allergic reaction to the gadolinium last time with the hives near my eye. (See the older post in 2010 but I posted the picture below. It was taken several hours post allergic reaction and post Benadryl.)
I've been debating which is worse for me, the MRI or the CT scan. Gadolinium or radiation? This round I chose what I feel is the lesser evil to be the MRI. My prep work consists of Prednisone 50 mg tablets 13 hours, 7 hours and then 1 hour before my MRI. I also take Cimetidine 300mg an hour prior to the MRI as well as 50mg of Benadryl. Lucky me I was also told that they have a crash cart on site.

I'll know to schedule my MRI earlier next time. 13 hours prior to my 4:30pm MRI means I take my first Prednisone at 3:30am. This would be the reason why I'm writing this at midnight. I figured I mind as well stay up rather than wrestle with sleep to get up to have a snack (take w/food) and my meds and then try to go back to bed.

There you have it. My MRI prep for hopefully my only cancer surveillance scan in 2011.

Update on Sammy

2011-01-03T07:20:00.001-08:00

This is a quick update on Sammy: My vet spoke with the oncologist. We cannot give him a CT scan unless we put him under and a biopsy is too invasive it's a watch and see. He only has one of the long list for Cushing's Disease which is thirst. We've upped and switched his food again so he's eating more so that might be the cause of it too.

I do hate putting the weight on him because I have a feeling his quality of life will be more of a challenge with his arthritis than his possible cancer. Thank goodness for his shoes but he's getting stuck and tangled a lot more now a days. The good news is that he seems happy and content in his senior years and that's all I can ask for right now.

Vet Oncologist

2010-12-20T20:49:00.000-08:00

December 18, 2010 I'm celebrating Christmas with Sammy. It's sad thinking this might possibly be my last Christmas with him.

I realized today that I have a much, much more difficult time talking about Sammy's possible diagnosis than my own. I've only shared with a few close friends and then on here, of course.

Looks like Sammy might get to visit with a veterinary oncologist. I always said that Sammy copied me with his multiple surgeries and now his possible cancer diagnosis. We have a vet oncologist in town and my vet will do a phone consult with her. I never would have entertained the idea of chemotherapy on Sammy but it seems as if chemo is different on dogs. The good news is that they do not lose their hair and I think that is saying a lot. We're nixing the idea of a CT scan too since he'll need to be put under for that.

HOPEFULLY he does NOT have cancer but to be continued...

Happy Holidays! May 2011 bring everyone nothing but good health and happiness. If you have good health and happiness you're the richest person in the world!

Sammy & Cancer

2010-12-15T21:10:00.000-08:00

I do not have children so Sammy is in essence my child. I never knew him as a puppy but remember him as a vibrant teenager that loved to play fetch, go for swims and explore. He was my chemo dog when I went through treatment. He had the same lump on his right side where they felt the lumpectomy removed all the precancerous cells. I watched him slow down as he aged. I would be with him when he had his grand mal seizures. I was with him when he vomited and hand a difficult time breathing and had to be rushed to the ER to be later diagnosed with laryngeal paralysis. Decisions had to be made whether or not he would have the invasive surgery at 10 years old. Looking at quality of life he had the surgery and surprisingly recovered well AND that took care of his grand mal seizures!

He has slowed down and is showing signs of stiffness in his hind legs. He's now sporting some cool sneaks to help with traction and getting up off the floor. He looks pretty good for a 12 year old lab.

His last visit to the vet showed high elevation of liver enzymes and higher ph in his urine with crystals. Long story short he has nodules on his liver that looks normal in older dogs but would need to be biopsied or CT to make sure it isn't malignant. They also feel his adrenal gland may have cancer.

I promised myself that he would not have further surgeries after his last one. This surgery would be real invasive. My gut tells me to look at his quality of life and forgo the surgery, especially since we're uncertain if it's cancerous. Giving him an invasive surgery would be like giving my 85 year old grandfather an invasive surgery. He could die on the table. More testing and research needs to be done but I am uncomfortable with any further surgery for him.

Though I've been able to find balance with cancer and my life and with work it always seems to keep creeping back into my life. This is one scary stuff...especially now that it's attacking my baby.

Focusing on the Neck Up & November 2010

2010-12-01T19:52:00.001-08:00

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

2010-11-08T19:47:00.000-08:00

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

2010-10-31T16:45:00.000-07:00

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

2010-10-26T14:31:00.000-07:00

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?

2010-09-27T16:03:00.000-07:00

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

2010-09-19T16:08:00.000-07:00

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

2010-09-04T18:06:00.000-07:00

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!

Power of Prayer

2010-08-23T17:26:00.000-07:00

I spoke to someone today that is losing her fight with cancer. She was diagnosed with carcinomatous meningitis which is a very rare form of metastatic cancer when cancer from the primary location (breast) invades the linings of the brain and spinal cord.

I've always known that life wasn't fair. This reaffirms it. She has a family and just finished up her treatment. She should be feeling better and not dying. As many strong women I have met in my cancer journey I know she is strong. The only thing she asked for me to do was to pray for her.

There are many research out there about the power of prayer. I'm not a real religious person but having people pray, think about you, love you can only be beneficial. So today I took some time to send her positive and healing energy. If you're a random visitor please pray for her.

Again, another reminder how wonderful my life really is.

More Potassium News...I think

2010-08-11T17:52:00.000-07:00

I posted a few post ago about my potassium. I went to see the kidney specialist and he thinks I'm expelling potassium through my urine or bowel. I had several tests done end of June and then mid July on supplements. They came back 4 and 3.9 which is in the normal range. Please see below.

My potassium stat: (Range for women should be 3.5 to 5.1)
March 2009 3.3
July 2009 3.6
November 2009 3.2
February 2010 3.0
March 2010 3.9 (On supplements)
June 2010 3.4 (On supplements)
End of June 2010 4.0 (On supplements)
Mid July 2010 3.9 (On supplements)

My test showed that I am secreting slightly more than average potassium in my urine but it's not a level that concerns him. I go back in this month to get my potassium level checked again. If it's normal he wants to try me off of the potassium supplement but to still push foods high in potassium. (I'm only on 25 units which isn't that high to begin with.) Will post more as I know more.

At this point I have 12 months of Tamoxifen left. 12! I'm so excited!

My Vitamin D3 Status

2010-07-15T21:03:00.000-07:00

My insurance does not cover my D3. It's about $2.75 per pill.

Nov 2008 I was at a 26 I believe so I started taking 2000iu a day and tried to get as much sunshine as possible.
Nov 2009 I was at a 46 so that was much better.
Feb 2010 I was at a 45 so my doc started me on 50,000 iu weekly for six weeks
March 2010 I was at a 62 so now I'm on 50,000iu once a month
June 2010 I dipped to 44 so now they want me on 50,000iu twice a month I've also been riding a great deal so I am outside though I do wear sunscreen so that might cancel that out.

It's interesting how both my potassium and D3 went down with my last lab. Of course we know that labs can do and make mistakes but I doubt mine is a mistake. I go back in for labs and to see my oncologist early October. I'll keep you abreast.

Low Potassium: Can I blame it on my cancer treatment?

2010-07-11T20:39:00.000-07:00

I blame a great deal of things on my cancer treatment which is really unfair because pre-cancer I never had my CBC (complete blood count) run so often. I'm on potassium supplements since my low February labs but it's still not as high as we'll like it to be. Below is the rundown of my potassium stats since last year.

My potassium stat: (Range for women should be 3.5 to 5.1)
March 2009 3.3
July 2009 3.6
November 2009 3.2
February 2010 3.0
March 2010 3.9 (On supplements)
June 2010 3.4 (On supplements)

I went to see a nephrologist (kidney specialist.) I am having two different test run. He thinks I might be expelling too much potassium when I urinate or have a bowel movement. He thinks extra supplements or medication might do the trick. I guess I don't mind taking extra supplements but I rather not take any more medication. I go in for my second lab this week and then see my nephrologist the following week.

I have 13 months (cheers!) of Tamoxifen left. Might this be the culprit or might it be from chemo? Hopefully it's an easy fix but it would be interesting to find out. I would love to be able to put this as a side effect of Tamoxifen and to be able to share with others. I'm off of Tamoxifen in 13 months and it would be wonderful if I didn't have to worry about my potassium level afterward.

I found the above drawing of the Tamoxifen bottle off of the internet and could not resist posting it. Even though I complain often about getting off to Tamoxifen I won't. A study came out a month ago that many women, mainly women younger than 40, were not diligent about taking their Tamoxifen or did not finish their 5 years. Tamoxifen is still the gold standard so why come this far to quit?

The Dairy Debate

2010-06-27T21:18:00.000-07:00

To drink or not to drink? That is the question. There’s always debate on whether dairy is good for you and I seem to flip flop back and forth on it as much as I do with caffeine.

The reasoning I found not to consume:

1. Even organic milk have hormones

2. We’re the only species that drink milk after being an infant

3. There are more allergies or intolerances to dairy

4. It can cause mucus

The reasoning to consume:

1. Great calcium to help with bone

2. Protein to help you feel full and to lose weight

What I’ve decided is to buy mainly raw cheeses (preferably organic.) I’ll switch back and forth between coconut kefir and regular dairy kefir. I found almond, rice, hemp and regular coconut milk to make my morning cuppa joe taste unsatisfying. I typically have only one cup so I figured I mind as well enjoy it. I finally discovered coconut creamer and I’m now hooked on the hazelnut flavor. I enjoy vanilla unsweetened almond milk in my green drink in the mornings to give it extra substance. (Be sure to read the labels and check the ingredients for added sugar and sweeteners.) I still buy milk on occasion but I only buy organic. I’m sure I’ll read more research and change my thinking again but it’s also fun to try new things. The dairy alternatives keep things interesting so I encourage friends that are interested to give it a try.

Danskin Relay June 6, 2010

2010-06-10T19:32:00.000-07:00

Relay team #166: Gloria swam half a mile at 28:13, I biked 12 miles at 49:18 and Kelly ran a 5k in 29:02.

Capital of Texas Team Survivor is a the local affiliate that empowers women with cancer to exercise and take control of their body. Some of these ladies just finished treatment and did the entire triathlon. I'm very proud of them.

I was supposed to do the bike and run but my knee was bothering me early May. I needed to make a decision whether or not I would run it or even if I would be able to bike it at all. Luckily taking it easy in May but mainly biking really helped it feel okay. All I heard all training long was about those hills. I practiced and practiced and learning how to shift finally made the difference. I made it up all the hills at the Danskin on my mountain bike! Training for this ride made me realize I enjoy biking more than running. An hour or two on the bike doesn't feel so long. Riding up South Congress was pretty cool. Flying down the hills off of Balcones is very exhilarating.

My focus is now on the Mamma Jamma Ride. Please consider donating, volunteering or riding. Any amount is appreciated. I've done 5k's. I did one just one week after my final Taxol. (I'll never forget that day. It was super hot and I wanted to give up. I had two angels along the way that made me push myself. I completed the 5k relay in 33:12 minutes on July 4, 2006.) I've done a hilly 12 mile bike ride. I'm now set for either 40, 60 or 70 miles September 25, 2010.

Clean Drinking & Eating

2010-06-02T20:12:00.000-07:00

BPA is all over the news lately. BPA stands for Bisphenol A and it is widely used in plastic products. BPA can leach from the plastics that we use and into our water or food. There are great links that it can cause cancer by disrupting our hormones.

Small easy steps towards being proactive with your drinking:

I now carry around stainless steel water bottles. Stainless steel seems like on the most durable and cleanest options. I love Klean Kanteen. It's the furthest water bottle to the right. It's large so I can easily keep track of how much water I drink at my work at it helps me to be green.

Glass is probably the cleanest but not necessarily the most durable when it comes to water bottles. I usually keep my green drinks in glass jars if I have left overs or when I take it to work.

Aluminum is a good alternative but it's also been known to be linked to other potential health concerns. I have a few and Sigg is a popular brand. I like it because it's lighter so I usually use it on the weekends when I stick it in my purse.

Clean eating options are just as easy:

If I choose to purchase frozen meals, which I rarely do, I stick it on a plate before sticking it preferably in an oven or a microwave. Amy's have changed their containers from plastic to a type of paper.

I purchased Pyrex or you can find equivalent ones to it if they are glass. I love them because you can oven, microwave or freeze them.

Do I still drink out of a plastic water bottle? Yes. Do I still use sandwich bags? Yes. I stick to my stainless steel and glass for the majority of time. Life is about balance and doing what you can do without feeling guilty.

Post GRAPHIC IV

2010-05-28T15:36:00.001-07:00

GRAPHIC IV was May 22, 2010. It's a week post GRAPHIC IV and I'm still rattled from it both emotionally and physically. It was the best and worst night. I may try to come back and write more but this article says a lot:

This was written by MP Mueller for The New York Times:

I was going to write about what happened to our agency the first time we really sat down and came up with a wish list of clients, but my head and heart keep going back to something that happened Saturday night in Austin.

That night about 400 people came together at the Bob Bullock Texas State History Museum for a rowdy fund-raiser, the Graphic IV Art Bra Fashion Show and Art Auction. The event, sponsored by the Pink Ribbon Cowgirls, a group of young breast cancer survivors, was not your typical fund-raiser.

Attendees were greeted at the door by a model who pointed at her bra and asked, “Want to take this home with you?” A steady stream of off-color jokes and puns, mostly about breasts, was unleashed. Art bras, some designed by local celebrities, were sold to raise money through live and silent auctions. Christy Pipkin, executive director of the Nobelity Project (which grew out of the movie “Nobelity,” which she co-produced with her husband), was there, rocking her new chemo pixie. Gail Chovan, an Austin fashion designer and “surthrivor,” showed off a bra that was made by Deborah Harry, the singer, and sported well-placed little black cowboy hats.

Supported by friends, family and doctors, the survivors shed their inhibitions as well as their shirts. Emboldened by their mission to raise money for the cause, the women strutted around with chests out, having come to terms (theirs) with the mammaries that had made an attempt on their lives. Men were given permission, even encouraged, to make eye contact — so long as they bid up the bras!

Together, the crowd remembered two young models who had died since the last Art Bra gathering. We raised a glass to Molly Ivins, the feisty Texas journalist who succumbed to breast cancer in 2009. Sarah Weddington, the lawyer who argued and won Roe v. Wade, and who also happens to be a survivor, occupied front row seats with her posse. Nearly 20 survivors strutted down a catwalk to pumping music, modeling decorated bras, vamping for the camera and shining from the reflected love of the crowd.

One of the women sashaying down the runway was the daughter of a woman I had chanced to meet earlier in the evening along with her twin sister. All three women stood tall and proud; all three have had breast cancer. When we’d met, Mom told me that her daughter was going to be a model and pointed her out in the crowd. All of 30, her bald head held high, she was fighting breast cancer for the second time in five years.

Now, a third of the way down the catwalk, she collapsed. People watched, unsure if it was part of the show or if she had tripped. It soon became obvious that this was not part of the script. Her mother rushed forward from her second-row seat, a doctor was called, and event organizers surrounded her. Two women held her feet high so blood would flow to her heart. People took turns doing chest compressions. The doctor ran in search of a defibrillator and we heard, “she’s coding!”

Someone finally found the dial, cutting the music and, mercifully, the spotlights. Someone else led the crowd in a spontaneous prayer. Those surrounding the woman implored her, beseeched her, willed her to breathe. Others stumbled out the door and into the night. Strangers embraced. The ambulance arrived and the young woman, pale and unconscious, was rushed away.

Bursting with bawdy reverie 20 minutes earlier, the museum was now in shock. The director of the Breast Cancer Resource Center took the stage. “This,” she said, “is what we do all the time — rally around and support those who the disease knocks down.” She said that the other models wanted the show to go on. And so it did. At the evening’s close, we were told the woman was stable and breathing on her own. More rivulets of black mascara.

We all have our ways of dealing with death and mortality. It’s been six years since I finished my chemo treatments. For the next two years, I lived with an urgency to look at every blue sky and to milk every sunset for the last rays of the day. I was a resource for a steady flow of newly diagnosed women and raised money for the cause.

My daughter, 9 at the time, and I scoured the neighborhood on bulky trash day, collecting discarded lawn mowers in alleys and tossing them into the back of my old pick-up. We took them home, painted them pink and distracted ourselves from our fears. With 12 pink mowers and another 12 pink grass clippers, the Cut Out Cancer Precision Lawn Mowing Drill Team marched in the Race for the Cure. My 72-year old mom wore majorette boots and marched holding our “drill team” banner for the entire race. Even my Dad, 78 and more accustomed to a red Toro, gamely pushed a pink mower that day.

I’ve learned we all have stuff we are dealing with, whether it be cancer, a sick child or parent, a lost chance at something we desired in our heart of hearts. As the years have passed since my diagnosis, I’ve told myself it’s not coming back, and I’ve transitioned from cancer survivor back to private citizen, from urgency back to complacency.

Surrounded Saturday night by women bravely dealing with this unwelcome visitor, that jolt came back — the reminder that life is indeed fragile and short. (How do we manage to forget?) Doing what you truly love each day is the difference between existing and living. Are you doing what you truly love? If not, how can you get there? Are you passionate about your work? Do you have a dream you own, a purpose? If not, take the time to reach into your soul and define one. Embrace it and strut down the runway of life with all you’ve got.

Let’s make a pact to cheer each other on.

Sammy

2010-05-18T20:54:00.000-07:00

Bill Bastas is now working on his fourth The Smile Never Fades book which focuses on pets. This photo was taken May 17, 2010 at Pease Park. It was close to 100 degrees but Sammy was a champ. Look back at it, Sammy and I have come a long way since Bill's first book. Check out my hair!

I now owe Bill a story about Sammy. Here's my first draft:

Dogs are such loving creatures. They live for the moment and cherish life to the fullest with many tail wags. Their happy go lucky persona is very contagious. They are also very smart and in tune with those that they love. These are just a few of the reasons why I love dogs so much.

My current baby is my chocolate lab, Sammy. He’s in his senior years now and he continues to bring me great joy. Ironically Sammy and I both have had our fair shares of surgeries and health concerns. My private joke with him is whether or not he is trying to catch up with me on the numbers of surgeries I have had.

Sammy was my chemo dog. He helped me get through chemotherapy, especially on the days that I did not feel well. He laid with me when I was tired and gave me constant attention when I was home. People always talk about a chemo smell and I honestly believe Sammy knew I was going through treatment and needed extra TLC from him. There were many moments that I cried with him, used him as a pillow and simply existed with him. I was able to be vulnerable with him.

Big dogs are known from their fatty lumps and Sammy was no exception. I was almost done with chemo when I found a suspicious lump on him. It was suspicious to me because it felt like my lump. My lump ended up being a 1.2cm invasive tumor. His aspiration showed inconclusive results that made the vets push forth on surgery. Sammy had a lumpectomy and his scar was a long scar on his right side. Earlier that year I had a mastectomy with a long scar on my right breast. The vets found suspicious precancerous cells in Sammy but felt the lumpectomy did the trick. Phew! Great news for the both of us! The summer of 2006 was the summer that Sammy and I both walked around with our right scar. Many people told me that Sammy took some of my cancer to make my journey easier. I don’t know what to believe but I know that he is an amazing dog.

He was also diagnosed with laryngeal paralysis where his airway was compromised just a few years ago. I had to make a choice of whether or not to do a laryngeal tieback surgery for him. Without the surgery he would be limited to little activities and be limited to mainly the house. He has slowed down in his older years but he still enjoys his walks. Of course there are always chances of complications like with any surgery. He was an older dog and he would always have to be monitored for aspirated pneumonia. Since it boiled down to quality of life I chose surgery for him. Fortunately he recovered well from it and surprisingly the seizures he had all his life were better maintained.

He has given me so much joy that I can only hope that I was able to return half of that back to him. My eyes are tearing up as I write this because of all the loving moments and memories I have had with him.

Deodorant of Choice

2010-05-13T20:15:00.000-07:00

It's hot in Austin. We're hovering at a heat index close to 100 degrees. I have never been known to sweat that often unless I'm doing cardiovascular activities or unless it's super hot and super humid.

The deodorant debate is out. Some studies are linking deodorant with aluminum to Alzheimer. It's also controversial whether or not it causes breast cancer. I'm still not 100% sure myself but I've been using the "natural" stuff for several years now.

The more I think about it, the more I'm uncertain whether antiperspirant is really a good idea. We hear how good exercising and saunas can be to "detox" ourselves. I know I feel great after a good sweaty workout. Isn't sweating a natural process to cool us down? If so, why are we trying to stop it?

I have to be honest that the switch to the natural kind was challenging, especially during the summer time. I sweat when it's hot. The natural kind is supposed to kill the odor but that's about it. I've used the crystal one too and it's the same thing. I am a little bit more used to it now but it is Austin.

I've used several brands. The crystals were clear cut. I did have an allergic reaction to the lavender scented one. It was either Jason's or Tom's Maine or both. I now stick to the crystals or the unscented ones. The picture above is the one I'm currently using. I'm still sweating but at least no one has run away from me holding their nose. :)

Do I recommend it? Yes. Are there strong hard facts to prove against using the regular kind? No. I do believe that we should consume products with short ingredients or whole ingredients if possible. Shouldn't we do the same with the products we put on us?

GRAPHIC IV May 22nd

2010-05-04T20:03:00.000-07:00

Our 4th annual art bra event, GRAPHIC IV, is May 22nd at the Bob Bullock Museum. We're changing it up because we outgrew out last venue. The Bob Bullock will take our event up a notch.

I had a very difficult time with my bra this year. I'm just not that creative or talented. I decided to start with a beautiful bra. The bra was already pink with the black floral on it. With help from fellow Cowgirls, I worked hard on making this bra pretty. I named it "Pretty in Pink." Breast cancer survivors are thrown into a world of pink when they are first diagnosed. I remember how I received so many pink items from friends. Most of the items were adorable but some were not. This is pretty in pink and it's sexy and fun at the same time. I embellished it sequins, beads and I even hand did each fringe bead.

I'm excited for this event. We have a handful of new ladies modeling this year and everyone's journey is so different. I'm so proud of each of them. This event is for them and all the other young survivors. To me it's also a tribute to two fallen Cowgirls that we've lost. We lost a beautiful angel just a few months after last year's GRAPHIC and we just lost another angel last month. We love you and you will not be forgotten.

You can prepare yourself for death but you can never truly be ready for it

2010-04-22T17:40:00.000-07:00

My sweet friend, my rock star oncologist and Moi at last year's GRAPHIC event April 2009

I found out last week that my sweet friend and fellow young survivor was not doing well from her husband. They moved back to MI when she was rediagnosed with stage IV to the liver back in 2007. She passed away April 16^th at 29.

She surpassed the 12 months her doctors gave her. She treated her body like a temple, surrounded herself with loved ones, worked on her new found passion and worked on her bucket list. She left behind a loving husband, her family, members of the Pink Ribbon Cowgirls, the Gilda’s club in MI, all her friends and all the other people she touched by her story. She recreated GRAPHIC and her first annual Bras for a Cause in MI raised about $50,000 and had about 600 in attendance. She started a social networking group up there like the Pink Ribbon Cowgirls. She did all this in her short time in MI and while she wasn’t feeling well.

I knew she wasn’t doing well after reading her blog in January. Her normal positive energy and willingness to fight was waning. We chatted some and she was anxious to get away from the cold and cloudy days of MI to trade it in for sunnier weather in CA. As horrible as she was feeling she made it there and soaked up the sun. She took many pictures while in CA and it will below your mind how beautiful and healthy she looks on the outside even though cancer was winning from the inside.

Sadly I was surprised yet I wasn’t surprised when I heard from her husband that she wasn’t doing well. We did what we could to support them from Austin but it’s never enough. It’s about this time last year was the last time I saw her beautiful smile. January was when we last chatted and laughed. March was the last time we exchanged emails. April 20^th is when I attend her memorial.

She touched so many lives. She loved sharing her story. She loved raising awareness and teaching people about health. She was positive most of the time, and when cancer beat her down, her dear husband helped pick her back up. She would not want us to mourn her loss but to keep living and making this world a better place to live.

She will be dearly missed but I’m glad she is at peace. You can prepare yourself for death but you cannot truly be ready for it.

My Green-Red Drink

2010-04-15T17:39:00.001-07:00

So I've been blending pretty religiously the past 3 years. Kris Carr and raw foodie got me excited about green drinks and eating raw. I found eating mainly raw was challenging. To find balance in my life I decided that having a green drink once a day was a great way to start the day.

My typical green drinks usually includes something like this:
greens: kale, mixed green or spinach
celery
cucumber
carrots
cabbage
sprouts
2 fruits: orange, mango, banana or pineapple

I blend everything up with some hemp protein and a little water in my fancy blender. The drink a glass in the morning as part of my breakfast and I save the rest for my pre-workout drink. I have about 4-5 servings of fruit/vegetables from that one blender.

I started with the Jack LaLanne blender because it was much more affordable than the Blendtec or Vitamix. The container started to leak after a year of using the Jack LaLanne and there are no replaceable containers. I used my cheapo $20 blender from Target and I was able to blend really soft things. I finally sucked it up and spent the money on a Blendtec. I like the Blendtec because of the size. The Vitamix is a great blender too. You can purchase replacement containers for both these brands.

Austin has a really neat store called the Daily Juice. I sometimes frequent there after a jog at Town Lake to cool off. I've been having fun sampling their products and trying my version at home. They have fun add ons.

The picture above is a new favorite green-red drink. It's yummy! It's my version of their Cosmic Trigger. It consists of:

Greens
blueberries
orange
cucumber
almond butter
maca
dash of cinnamon and cayenne pepper
hemp powder
a drizzle of local raw honey
cacoa

Anyway, they list the ingredients on their site to feel free to visit it to get new ideas. Variety is the spice of life. In reality you can add any greens, especially spinach, to any smoothie without ruining the taste. It's about having fun and exciting your taste buds while getting lots of nutrients!

My last Lab

2010-04-04T12:18:00.000-07:00

I had my last lab March 29th to retest my D3 and my potassium. My D3 went from 42 and soared to 62. Instead of 50,000iu weekly I am now on 50,000iu monthly.

My potassium went from a low 3 to 3.9. The range for women is 3.5-5.1. I will continue with the potassium supplements and get retested in June when I see my oncologist again. I am consistently drinking coconut water on cardio days and trying to include a banana and/or an orange each day. I've recently discovered Nuun which are portable electrolytes. I haven't tried it yet but will look into it. Let me know what you think of it if you've tried it.

I'm toying with the idea of doing the Danksin with Team Survivor in June. Instead of completing the entire tri I think I will focus on the biking and running. Baby steps! :)

Ovarian Cysts

2010-03-17T15:22:00.000-07:00

I've been experiencing some hip/pelvic pain for about two years now and that is why I started asking for CA125 (ovarian cancer tumor markers) and pelvic ultrasounds. My ultrasounds and CT shows that I typically have a cyst within each ovary. My last ultrasound showed a fairly large one within my left ovary, close to 5 cm. Apparently cysts can get as large as a grapefruit or cantaloupe! I will go back in early May to have another ultrasound.

Ovarian cysts can be fairly common. They typically go away and start all over. It's the ones that do not go away, become too large or are solid that can pose other health issues.

I know it runs in my family because my mom and sister both have/had it. Some further digging via Internet I found out that Tamoxifen users may suffer more from ovarian cysts too. I need to do more research on this but I'm five months shy of my 4 year mark on Tamoxifen.

My last visit with my oncologist

2010-02-18T15:16:00.000-08:00

I saw my oncologist last week for my routine lab work and check up. Naturally I asked her about having MRI without contrast. Apparently they want to see the veins and all the intricate details and that is the job of the contrast. She thinks I'm fine for a while and perhaps skip every other year. I'll just have to be pre-medicated and squeeze (literally) in mammograms too. As you know, I'm not too thrilled about doing mammograms since it did not detect my initial tumor but I'll entertain the idea.

The following day I received a voicemail about needing to call them back to talk about ordering in a prescription. Whoa! A prescription? What??!!?? My potassium level has been low or in the low range since the summer of 2008. The range is 3.5 to 5.1. I've been dancing around 3.6, my highest, to my latest and lowest one of 3. Usually my lab sheet has an L for low on my potassium. This last lab sheet had an L with an exclamation following it! L!

Potassium is vital for many things but it's very important for nerve, muscle and most importantly my heart muscle. I was given four doses of Adriamycin and a year's worth of Herceptin back in 2006 and 2007. Both are known to cause cardiac issues. I'm currently on potassium supplements 20 MEQ but I also have many unanswered questions. WHY do I have low potassium? Never Google because it can freak you out. I'm waiting to hear back from my oncology office concerning my questions and we'll go from there. My diet is pretty potassium friendly but all the research I've done states that low potassium is usually not from what you eat. Either way, I'm downing my bananas, organes and coconut water!

My vitamin D3 is pretty stable in the 40's which really surprises me since we've had very little sunshine in Austin with El Nino. I've been placed on 50,000 IU once a week for the next four weeks to boost it up. My insurance does not cover these 4 supplements but thankfully they were less than $20.

So, hopefully I'll know more with my next post. Live long and prosper!

MRI Number 5 & Lessons I've learned

2010-01-27T13:13:00.000-08:00

I actually did not have my MRI on January 18th. Apparently there is a new protocol for premenstrual women. MRI must be performed 7-14 days after the first day of the last menstrual cycle because of all the false readings. I think this is wonderful that they are doing this but they did not tell me about this when I scheduled my appointment. I was reminded of my MRI the Friday before my MRI and no one told me of this. I checked in Monday morning and no one told me of this. It wasn't until I was finally called in and standing in the changing room when I learned about this. Needless to say, I was not very pleased.

I've been very vocal about them telling women ahead of time. They said they would go ahead and test newly diagnosed women. They were not able to provide me with actual research but that it was instated the end of last summer. I was not aware of this so I am informing women I know about this and making enough noise for them to be notifying their clients prior to an MRI.

A week later, January 25th was my MRI. Everything went smoothly enough as I spoke to the technicians and asked them about the new protocol. My scan went well too. It's never very comfortable having to lay face down with your arms above your head for a good 40 minutes. When I was done I remember my right arm was very sore from me lying on it. My face also felt very sore because I was lying on it. It wasn't until I got in the changing room that I noticed that my left eye was slightly swollen. I asked the tech if it was an allergic reaction. She said most likely. (Did she not notice it when I first got up from the MRI machine? ) I was asked many questions and my vital signs taken every few minutes. I was given Benadryl and was detained there for monitoring. The swelling and itching went down drastically in the 45 minutes I was there as the benadryl kicked in. The above picture was taken about two hours after everything happened. There is still some swelling above my iris. I wish I remembered to take a picture of it when it first happened so you can compare the two.

Anyway, if I want contrast in the future I would need to have steroids and antihistamine the day before and the day of my MRI. I've been doing some research on the dye and it's actually pretty scary. It's ironic how not having this test can delay early treatment from a recurrence but having this test may kill me too. (Or have adverse side effects.) I did learn that you can do MRI without contrast and the accuracy is still the same. The contrast is good to see the blood vessels. I see my oncologist in February so I will need to pick her brain. I'm not done with my researching but I learned a great deal from MRI number 5.

By the way, I received the happy phone call a few hours ago that everything was clear!

Annual MRI Tomorrow

2010-01-17T20:57:00.000-08:00

I have my annual MRI first thing tomorrow morning. Most scans don't worry me too much since I know I've been very proactive with my health but there's always the little "What if" you hear in the back of your head. This coming November 16th will mark my 5 year Cancerversary which excites me in many ways. People that are considered triple negative (HER2-, ER- and PR-) are thought to be cancer free after 5 years. Unfortunately that is not the case for me. I'm triple positive and being HER2 + makes mind rather pesky but I won't take my 5 years for granted!

So I'm off to bed and hopefully will get a restful sleep. I'll start off my morning with a list of things I'm grateful for.

My First Bike Ride

2010-01-08T12:34:00.000-08:00

I've learned how to ride a bike when I was a little girl. On September 25, 2010 I will be riding in my first bike ride-ever! I'm nervous and excited about it at the same time. I've done a 5K (nothing more advanced but I've participated in a run before) and jogging is something I can easily do once I lace up my shoes and head out the door.

Riding the 2nd Annual Texas Mamma Jamma ride holds much significance. I bought my mountain bike before I was diagnosed. I rode mainly at Walnut Creek and did trials and hills that impressed me. The exhilaration of the climb or from coming down a big hill used to set me free. Fast forward to post diagnosis. After having multiple surgeries to my chest, mountain biking scares me. I've done Brushy Creek where it's a flat trail but it's safe.

At this point I'm uncertain if I'll ever feel comfortable enough to reride those hills. Maybe I will be able to do it one day... For the time being I'm excited to road ride and for a good cause! I've bought slicks for my mountain bike and plan to ride at least 46 miles but will ride 66 miles if I can. I will be at a disadvantage because I will be on my mountain bike but I don't have a road bike so I do not know the advantages of a road bike.

The Texas Mamma Jamma benefits 10 local organizations so please donate if you can. Everything counts, even $5. If you don't want to donate, why not volunteer or ride yourself? Click here to donate! Many thanks to Paul and Mary Ann for their donations. I know you would ride with me if you were here...well, maybe only Paul but I sure appreciate your support!

Neti Pot

2010-01-04T19:42:00.001-08:00

Wow! What a cold winter, even here in Austin! My daily use of the neti pot prompted me to start my 2010 blog about it. If you don't have one, you may want to consider it. It's been around for a long time but I discovered it post diagnosis.

The neti pot flush out your nasal cavities using the flow of gravity. Yes, the spout you see does connect with one nostril and the saline inside comes out the other side. I usually use warm water with a pinch of Himalayan sea salt to make my saline.

I use it for several reasons. 1. I have allergies in Austin in March and May. I make sure I neti once to twice a day depending on how I feel. It helps flush out the pollen in my nose. I usually avoid allergies medicine. My main culprit is eye irritation which I flush out with some clean eye saline. 2. I use my neti religiously during the winter time when to combat arid temperature. It helps keep my nasal moist AND that helps it stay healthy against the cold. 3. I use it after I fly. The neti pot helps flush any germs and bacteria trapped inside my nose.

The white one on the left is my home neti pot and it's ceramic. The green one on the right is my travel neti pot. I recently bought the travel one and it was a life saver while I was in NM two weeks ago. It helped keep my nose moist and (knock on wood) I escaped another year back of getting sick.

Does it really work? It makes sense to me. It takes just about a minute or two so why not? I prep my neti pot by putting a pinch of salt in my pot. I typically neti when I'm in the shower so there's no mess and it's super quick. You can breathe through your mouth while you're using the neti pot. I've taught three friends to do the neti pot and they now do it religiously. It's amazing how well you can breathe and without medicine!

Your neti pot should come with instructions or you can google it. You can also buy solution for your neti pot rather than using the Himalayan sea salt. I know it sounds odd but what do you have to lose if you have bad allergies, live in an arid climate or if you're typically sick? You can find them in places like Whole Foods, Vitamin Cottage and other health stores.

Gene Patenting?

2009-12-01T19:07:00.000-08:00

The following is my personal opinion/statements and does not reflect the opinions of any organizations I am affiliated with.

There are two known genetic mutations that causes an increase in breast and ovarian cancer, the BRCA1 and BRCA2. Myriad Genetics, a private company based in Utah, owns the human gene patents on the BRCA1 and BRCA2. The patent prevents other researchers or companies to look at these genes.

This is harmful for many reasons but I will list only two of them:
1. No competition in test price which is about $3100.
2. Other researchers and companies cannot test the many mutations along the BRCA genes. (Remember that I have a BRCA1 variant of uncertain significance and further testing cannot be done and are actually not being done to see how significant this variant really is. I was the third Asian that had this variant. I'm treating myself aggressively as if I have the mutation, hence the bilateral mastectomy. I finish up Tamoxifen in two years, when I'm 35. What then? Do I have an oopherectomy to remove my ovaries? That would be my option if I really am BRCA1 positive but am I truly BRCA1 positive?)

On May 12, 2009 genetic specialists, researchers and cancer survivors are represented by ACLU to challenge the patents on the BRCA genes. Should human genes be patent? What do you think? Knowledge is power, learn more.

To learn more www.aclu.org/brca
Liberate the Breast Cancer Genes video

Young breast cancer survivors encourage other young women battling breast cancer

2009-12-01T19:02:00.000-08:00

http://www.austinwomanmagazine.com/Health/2009/Fall/Articles/30_Breast_Cancer.html

Article on the Pink Ribbon Cowgirls by Darline Turner:

Women in their 20’s and 30’s are on the fast track to full lives. They’ve completed college and many have earned advanced degrees. They have careers and are pursuing their intellectual dreams. Many women meet their life mates and plan long-term relationships for the first time. Thoughts turn towards starting families and children; how to balance all the facets of their busy and exciting lives? Endless possibilities exist and young women stand poised to move forward – strong and confident. But for many young women, this forward progression comes to a screeching halt when they are diagnosed with breast cancer.

According to Surveillance Epidemiology and End Results (SEER) of the National Cancer Institute, it is estimated that 192,370 women will be diagnosed with and 40,170 women will die of cancer of the breast in 2009. 12.4% of the women diagnosed between 2002 and 2006, the last years for which data has been compiled, will be women under age 44.
“A young woman with breast cancer is pulled out of her peer group,” says Michele Burton, a young breast cancer survivor. “Her entire focus shifts from career and family to survival. Although friends and family members try to be supportive, they really can’t understand the impact that a cancer diagnosis has on a young woman. The body image issues alone are overwhelming.”

According to SEER, the median age at diagnosis for breast cancer is 61. Breast cancer support materials and groups target their information to women in or near this age group. Young women attending these support groups seldom find answers to questions such as dating with breast cancer, fertility preservation and raising children while on chemotherapy. Burton, a volunteer at the Breast Cancer Resource Center of Austin (BCRC), along with Shauna Martin and Audra Outlaw, also young breast cancer survivors, organized The Pink Ribbon Cowgirls – A Social Network of Younger Breast Cancer Survivors. The group provides support and information to young women with breast cancer and operates under the direction and support of the BCRC.

The Pink Ribbon Cowgirls held their first meeting in April 2006 at Central Market Café on North Lamar Boulevard. With each luncheon, the group continued to grow. Today, three years later, the group consists of 150 members, has representation on the Breast Cancer Resource Center Board of Directors and now has its own director of Young Survivor Services, Runi Limary, a two-year breast cancer survivor.

“The Pink Ribbon Cowgirls is really a social networking group,” says Limary. “We organize girls’ night out evenings, speaker meetings, workshops, seminars and family-friendly activities.” They discuss topics like nutrition, fitness, sexuality, fertility and family planning, caring for young children during treatment, career and dating issues. “Our focus is on being strong and thriving,” says Limary. “We are all very aware that we were diagnosed very young and that having cancer sucks. We do what we can to support one another. We’re really here for one another.”

Limary was 28 when she was diagnosed with breast cancer back in 2005. She found a lump in her right breast on self-examination. “I went and had an examination by my physician who sort of pooh-poohed the idea of me having cancer. She did order a mammogram and there was nothing seen, so she advised me to have another mammogram in six months.” Limary was very concerned and actually had a follow-up three months later because the lump seemed to double in size. “I had a needle biopsy at that time and it was negative. I saw a surgeon three months after the biopsy who removed the lump and sent it for evaluation. The Pathology report came back positive for stage one cancer without lymph node involvement.”

Limary had a mastectomy with reconstruction in January 2006. Her breast tumor came back from pathology HER 2+ and her surgery was followed with five months of chemotherapy. Because her tumor was estrogen-sensitive, she is taking Tamoxifen suppression therapy. In 2007, Limary tested positive for a variant of the BRCA 1 gene mutation. She decided to have a prophylactic left mastectomy with reconstruction. Limary completed all therapies, (with the exception of the Tamoxifen, which she will continue to take until 2011), in November 2008.

One of the most difficult challenges that young women face is preserving their fertility and having children while battling breast cancer. Michele Burton found a lump in her breast on self-exam in 2001. Her gynecologist also felt the lump and referred Burton for a mammogram. She explained that Burton’s risk of having breast cancer was low because she was just 32 years old. Burton’s mammogram and additional ultrasound images showed “micro calcifications in her breast.” She did not receive treatment at that time and had a repeat examination in six months. At the re-examination, a radiologist who specializes in breast disease was more suspicious of the spots on the mammograms and asked Burton to have a biopsy right then and there. The biopsy results showed that Burton had invasive stage one ductal carcinoma. Two weeks later, she found out that she was pregnant.

“It was all so overwhelming,” says Burton. “Everyone I talked to said to terminate the pregnancy, but I didn’t want to do that. Finally, I went to MD Anderson Cancer Center in Houston. Those doctors were the first and only ones to tell me that I could actually continue the pregnancy.” Burton had a lumpectomy with sentinel node biopsy in her first trimester and started chemotherapy in her second trimester. Three weeks after she completed chemotherapy, Burton gave birth to her daughter. One month after delivery, she had radiation therapy and Burton also completed five years of Tamoxifen therapy in 2008. To date, Burton’s daughter has no known developmental problems. Time will tell if she has any fertility issues as a result of her mother’s chemotherapy.

In May 2002, Audra Outlaw was 31 years old and had been married for eight months when she noted a lump protruding from her left breast. Mammography could not detect any tumor, but ultrasound revealed two tumors. Outlaw’s biopsy results indicated that she had very aggressive, locally advanced, invasive, ductal carcinoma, between stage two and stage three. It had entered the lymph nodes and her doctors predicted that it would spread.

“It was a very emotional time,” says Outlaw, who understood that her cancer treatments would likely leave her infertile. “I felt so badly that my husband would never have the family that we had hoped for. I wasn’t even sure how long we’d have together. It was also very difficult to imagine having both breasts removed. But I knew that it was the right thing for me to do. I couldn’t wait around monitoring the tumors and waiting to see if the cancer spread. I didn’t want the worry.”

Outlaw had her surgeries performed at MD Anderson Cancer Center and her chemotherapy here in Austin. Once again there was trouble. “I developed painful ovarian cysts while on the Tamoxifen. While it was blocking my menstrual cycles, it didn’t completely suppress them. That meant I had a chance at being fertile enough to have a baby.” It was a very narrow window, but according to Outlaw’s obstetrician, Mark Akin, MD, it was enough to try one cycle of Clomid. Outlaw took the medication and conceived. She delivered her son in June 2005, two years and two weeks after her breast cancer diagnosis. Outlaw conceived a second child naturally, and delivered a healthy baby in February 2007. There is no sign of her breast cancer recurring.

Shauna Martin’s course was a bit more complicated. Diagnosed with stage two breast cancer in her left breast in August 2005, Martin knew she wanted more children. At 33 years old and with a 19-month-old son, Martin relentlessly researched how to preserve her fertility. She contacted Fertile Hope, a nonprofit organization that provides information and support to cancer patients who risk losing their fertility to cancer treatment. Martin, who had an aggressive breast cancer that required aggressive treatment, had planned to freeze her eggs but learned eggs don’t freeze as well as embryos, so she had fertility treatments and preserved 12 embryos prior to lumpectomy and chemotherapy. Following all of her cancer treatments and five years of Tamoxifen suppression, she can try to conceive using the frozen embryos. She will be 40 years old.
One month after her diagnosis, her younger sister was diagnosed with the same aggressive breast cancer. Neither woman has the known breast cancer gene mutations, nor do other family members have breast cancer. Martin’s sister had both breasts removed and followed with chemotherapy. Martin had her right breast removed and both breasts reconstructed, and will likely have both ovaries removed in the future to completely suppress estrogen production and prevent tumor recurrence.

Young women with breast cancer face difficult treatment decisions that are further complicated by such issues as blossoming careers, preservation of fertility and caring for young children while in treatment. Single survivors wrestle with telling a potential partner about their cancer and issues of intimacy. The Pink Ribbon Cowgirls offer social outlets where young breast cancer survivors can meet and share support, ask questions and get answers. For the young women of Austin, they’re nothing short of the cavalry.

Support Resources

The Breast Cancer Resource Center of Austin
A centralized source of information, education and support that enables women to be active, knowledgeable participants in their healthcare. The center is open to the public and free of charge.
The Breast Cancer Resource Center
900 E. 30th St., Ste. 108
Austin, TX 78703
512.544.0900 or visit www.bcrc.org

The Pink Ribbon Cowgirls
A social network of young breast cancer survivors. This group specifically addresses the needs of young women 18-44 who develop breast cancer. The program is fully funded and supported by the Breast Cancer Resource Center of Austin. For more information on the organization, to join the social networking group and to learn more about activities and events, contact Runi Limary, director of young survivor services at 512.544.0907 or runi@bcrc.org.

My Cancerversary , 33rd Birthday and Thanksgiving

2009-11-28T09:43:00.000-08:00

November 16, 2009 I celebrated my 4 year cancerversary in style. I had acupuncture, lunch with a friend, massage, dinner with a friend and Rufus Wainwright at the Paramount (thank you, Carol for the tickets.) I'm listening to The Fray and Augustana as I blog because I bought the songs from itunes as a gift to myself.

November 22, 2009 was my 33rd birthday. It's so ironic because I really thought that 29 was going to scare me but cancer happened right before my 29th birthday. My birthdays do not scare me anymore. It's really an opportunity to live and to make a difference in this world...a celebration of life. I'm so fortunate to have friends to celebrate my birthday with. I loved my phone call from Ben and Ryan with their sweet voices. I loved the overwhelming birthday wishes on Facebook. I loved all the voicemails my out of town friends left for me. The above picture is dinner at NXNW with friends. For my birthday weekend I slept in, worked out, read at Starbucks, had dinner with listened to a cover band with friends. I also had brunch, watched a movie, went for a bike ride and dinner with a friend. Simply perfect!

The last time I was in Albuquerque for Thanksgiving was the year I was diagnosed. My sisters flew me out there to tell my parents in person that I was just diagnosed with breast cancer. I was thankful they did that. I was able to spend time with Ryan and tell both my parents and my friends face to face. Most of my Thanksgivings are spent with random friends since I am considered an "orphan" during Thanksgiving in ATX. In Austin I've spent it with RJ, Rock, Rob & Bev, Shell and Cara's family. This year I was thankful I was invited to four Thanksgivings. I spent Thanksgiving with Cara and her mom's side of the family. They had six different desserts, three turkeys (two breasts but more than enough turkey,) salad, fruit salad, rolls, potatoes, dressing, cranberries and gravy. Great food, great company! I'm thankful to have spent the day with them.

Shell surprised me by making a small Thanksgiving at her house on Friday. We were just supposed to catch up and for me to play with Nicole, her adorable almost two year old. I was able to do that, spend time with her parents and help her put up her Christmas tree. Since I've known Shell we've always decorated her house together. Well, I think I may have missed a year but it's been a nice tradition for us!

November 2009 Vitamin D3 Results

2009-11-28T09:35:00.000-08:00

I found out my vitamin D3 went from 26.2 last year to 42 this year! More and more research is geared that 40-60 is actually ideal though 30 is the low range. I've been on 2000 iu a day and I try to get out side, even if it's for a short amount of time. Please do further research and talk to a health care provider further about this if you're interested. Knock on wood but it's been 2 years since I've had the flu and a year since I had a cold.

Notes from LBBC's Annual Fall Conference in November 2009

2009-11-25T13:20:00.000-08:00

LBBC’s Annual Fall Conference 2009

What Today’s Research Means for Tomorrow

Herceptin for HER2 +; Tykerb for HER1 and HER2 +
PARP Inhibitors in clinical trial phase II with chemo or chemo w/Parp; so far those with the chemo w/Parp are living 2x as long; future use may be for BRAC/Previvors for ovarian and breast cancer
Avastin to target VEGF which may improve the delivery of chemo; clinical trial are being used for earlier stages of cancer

Hormone Therapies

Tamoxifen and AI is better than TAM alone for post menopausal women; can switch to AI after 1,2,3 or 5 years of TAM offers benefit beyond TAM alone though some studies show varying benefits of AI over TAM from the start
Ovarian ablation of Lupron or Zoladex for premenopausal women
Side effects of TAM & AI includes increase cholesterol, liver enzyme abnormalities (not liver disease,) lower white blood count
Avoid hormone replacement therapy, topical estrogen creams okay, low fat diet, exercise, alcohol in moderation and avoid high soy content like concentrated powders

The Impact of Weight Training

Speaking to a physical therapist before surgery can be helpful for range of motion
2x a week slow progression strength training safe for those with and w/o lymphedema; be sure to warm up and use resistance with core stability
Significant risk factors for lymphoma: arm infection, injury and elevated BMI and NOT occupational and leisure-time physical activity
Risk of lymphedema flare-ups decreased by half and strength & body image improved

Integrative Oncology: Complementary Therapies, Herbs and Dietary Supplements

1. Keep body fat in check BMI 21-23 ideal, 2. 30 minutes of physical activity a day, 3. Avoid sugar and fast food, 4. Eat at least 5 servings of nonstarchy fruits and vegetables, mainly plant based, 5. Limit red meat to 2x a week, go organic and avoid grilled and processed meats, 6. No more than 1 alcoholic drink a day, 7. Meet your nutritional needs through diet alone and is not recommended for cancer prevention 8. Avoid salty and process foods (bacon, sausage, lunch meats)
Mediterranean Diet is ideal since it’s anti-inflammatory with 3-5 fruits and vegetables a day, 2+ protein of (legume and nuts,) whole grains, extra virgin olive oil, calcium between 1000-1500 mg between food and supplements and Vitamin D3 1000-2000IU
Avoid antioxidants while on chemo and radiation
Herbs and other botanicals are tricky. Concern with contamination, toxicity, drug interaction and concern that it may have hormonal impact. Great website www.mskcc.org/aboutherbs
Acupuncture, acupressure, massage therapy, mind/body practices like yoga, meditation, tai chi, qi-gong and hypnosis all helpful

Vitamin D3

2009-11-09T20:05:00.000-08:00

Get outside and play! The newest studies show that vitamin D3 is the new wonder vitamin. The best way to get it by getting natural sunlight without sunscreen. As little as 15 minutes a day will do the trick. In 2009 we tend to live in a cave. We leave our house to go to work. Most of us drive to work rather than walk or bike. We leave work and it is typically already dark. The cycle continues.

We can get vitamin D3 from the sun and from supplemens but make sure it's D3 and not D2. They found that those lived closer to the equator had less cancers and other illnesses. Those at the equator are exposed to more sunlight. Those that lived in the very northern or southern hemisphere experienced higher rates of cancer and other illnesses. People with darker skin, mainly African Americans, have skin that block some of the vitamin D3 so they have a harder time getting it naturally.

I had mine tested last year. I was at 24 if I remember correctly and the safe low range is 30. They are now suggesting 40 to 50 is ideal. I've been on 2000 IU since then and will hopefully get it retested on Wednesday. I've been making it a point to get more sunshine. It is harder to get it during the week days but I try to walk Sammy in the mornings and during lunch.

I suggest asking your doc for a simple blood work and run 25(OH)D. Most insurance companies will cover it but your medical establishment can run the code for you to double check.

I've watched as Sammy sun bathes. It's almost innate for him to do that. We've all heard of SAD (Seasonal Affective Disorder.) We lather up on sunscreen and spend too much time working indoors. I personally still use sunscreen when I know I'll be out there during peak times or for a long time. Do some extra research and see what you find. I'm a believer. Knock on wood but I haven't been sick since this time last year. I think this and my green drink in the mornings are key.

Four Year Cancerversary

2009-10-30T13:24:00.000-07:00

My four year cancerversary is November 16, Monday. It's hard to believe that it's been four years. My life four years ago is so different from what it is currently. I'm very excited that I'm heading towards my five year mark since my diagnosis but I know recurrences can always happen. I've unfortunately seen it recently to someone that is young and had a bilateral mastectomy.

I've been on Tamoxifen for over three years now. I can handle the hot flashes now that it's finally cooled down in Austin. I'm still having a hard time with sleep. I have my four month check up coming up and I'll have to chat with my doctor about that.

Here's to four years and counting! Happy Halloween and Happy almost November!

Pictures of my hair about 3 years post chemo & my up coming cancerversary

2009-10-07T20:25:00.001-07:00

Pink weekend at The Smile Never Fades Gala September 25, 2009 Blog and extra picture taken by Michael Barnes.

14th Annual Champagne Brunch September 27, 2009
So it's getting pretty long. My goal is to grow it long and then donate my hair again. There's still a little chemo curl/wave left but nothing that is overly bothersome. I love being able to put it in a ponytail or clipping it up. Talk about learning to appreciate what you have/had!

November 16th will be my 4 year Cancerversary. Someone coined this word apparently and it marks the day you were diagnosed with cancer. It falls on Monday this year but I plan on celebrating the weekend prior. Heck, celebrate all month since my 33rd birthday is coming up too!

Love for My Doctors

2009-10-07T20:08:00.000-07:00

I love my doctors. I trust them. Everyone needs a doctor to fill certain needs. Some people need to be motherly and nurturing. Others need them to be God. I want someone that is good.

After my late diagnosis back in 2005 and my issues with my first plastic surgeon, I've been very fortunate to love all my doctors. My first impression of my oncologist was dedication. It was my doctor's day off and she came into speak to me because I was just diagnosed.

Once again I love her. I've been seeing a neurologist to figure out my neuropathy. MRI of the brachial plexus and it came back with questionable findings in my left lymph node. My cancer was in the right breast and I had a sentile node biopsy done on the right side and it was clear. She called to let me know what they found in the MRI but for not for me to be alarmed and she would schedule a CT scan first thing tomorrow morning. 48 hours later and she called letting me know that it was clear. She said she was going to have a drink that night to celebrate. Of course that 48 hours was nightmarish and we know that too many scans to show false negatives. However, I love how she was on top of things. It was my neurologist that ordered the brachial plexus MRI and not her. I rather be safe than sorry since we know what happened to me back in 2005.

I feel good about my other docs too. I think that is the most important thing when you choose a doctor. You need to figure out what YOU need from a doctor. Do your research. Ask around. Get a second or third opinion if you feel iffy. I hear all the time how one person adored one doctor and one person could not stand that doctor. I want someone that will listen to me, or humor me, and someone that is skilled/qualified. It's only a bonus when they are compassionate or funny.

Flexetarianism

2009-09-13T15:58:00.000-07:00

Life is about balance. I've dabbled in raw. I've dabbled in vegetarianism. I recently read somewhere about flexetarianism. A flexetarian is a person that eats mainly vegetarian but still consumes meat. That's me!

I still start every weekday with a green drink, red if I throw in a beet. My green drink is raw and contains vegetables, fruit and hemp protein. I found blending to be more cost efficient and less wasteful than juicing. You can use any blender you buy at Target though you will not be able to blend tougher vegetables well like kale. It's a good idea to invest in either a Blendtec or Vita-mix. They are $400 or more but it's worth it if you plan on blending often. I initially had a Jack La Lanne blender for $100 and it worked well until it started leaking. You cannot buy replacement parts unlike the other two I mentioned. Blending also allows you to consume needed fiber. Even so, it was not enough to sustain me as meal. I now have my green drink with a hard boiled egg and some keifer.

For lunch I typically have a large salad with raw cheese. Some days I will add in fish, chicken, avocado or nuts for my fat and protein.

Snacks usually consists of fruit, nuts, raw bar or flax crackers.

Dinner is fairly normal but typically healthy. It may or may not contain meat.

I try to always have raw dessert on hand because I have such a sweet tooth. Using fruit or agave nectar really makes the dessert satisfying and healthy.

Typically I do not eat grains that much. If I do, I try to eat quinoa or sprouted grains. Things I always keep in my freezer/fridge: brown rice tortilla, manna bread and Ezekiel bread w/o soy.

When I eat out I typically get a salad, with our without meat. There are days that I splurge and get my stuffed chicken poblano. Z'tejas and Sagos make the best stuffed chicken poblano in Austin! Also, variety is the spice of life. My waiter the other night told me this. Of course it's an old adage but he's right!

Love

2009-08-26T08:12:00.000-07:00

Posted on Crazy Sexy Life and written by Gabrielle Bernstein. I enjoyed her posting so much I thought I would share it with others that may stumble along to my blog.

After being diagnosed with cancer, I changed. There is a new normal. I try to forgive more and really had to focus on forgiveness in the past few years of my life. Life is too short to harbor ill will. It only becomes toxic and harms us. Learning to let go of worries, anger, fear and emotions is something I work on every day. Gabrielle gives it a meaningful and manageable way to become a Lovetarian. (My next posting will hopefully be on flexatrian.)

Here's her wonderful posting:

Four years ago, I decided to clean up my mind and become a loveatarian. Choosing loving thoughts over fearful delusions was a tough transition at first. Giving up fear is like giving up sugar. Much like sugar, fear is a sneaky ingredient that hides out in everything. And just when you think you’ve got it under control all of sudden it pops up again. Therefore releasing fearful patterns requires you become a loveatarian.

One of the key components to my loveatarian lifestyle is my dedication to the teachings of A Course in Miracles. The Course teaches, “An untrained mind can accomplish nothing.” The Course is a self-study metaphysical guide that can be approached in whatever capacity works best for the individual. My experience studying the Course has resulted in a full blown mind cleanse and a super rockin’ life. As soon as I cleaned up my fearful thought patterns everything began to change. The most significant change is not what I experience, but instead, how I experience my experiences. As a result of following the Course’s suggestions I’ve forgiven my past, released my future and show up for the present with love and faith. Like they say in twelve step meetings, “It works if you work it.” Therefore I keep workin’ it on a moment by moment basis.

The crucial ingredients to workin’ the Course’s mind cleanse are the following concepts:
1. “Nothing real can be threatened” – Translation: Only love is real
2. “Nothing unreal exists” – Translation: All fear is an illusion
3. “Herein lies the peace of God” – Translation: Choose love over fear and you will be way more chilled out

So how do you choose love over fear? One word: Forgiveness. The act of forgiveness is to the loveatarian as a wheat grass implant is to the raw foodie. Forgiveness guides us to remove all of the old fear crap and clear space for love. The Course teaches that forgiveness is the key component to bringing the egos darkness to the light. Rather than continuing to play the role of victim we can forgive and be set free. With each choice to forgive you shift your perception from fear to love. The Course teaches that every shift in perception creates a miracle. Miracles are crucial to the lovetarians mind cleanse.

The payoff for sticking to the loveatarian way is that the more you choose forgiveness and love the more miracles you experience. And the more miracles you add up, you become less and less likely to perceive life through fearful lenses. When you choose to perceive love over fear, life gets super fun. You feel peaceful and you see love in all situations. Your fears subside and your life feels guided.

If you’re interested in these kinds of results begin your loveatarian diet today. Proceed with the following plan:

Breakfast: Pray to God/Universe/Inner Guide (or as Kris would say Jesus, Buddha, Elvis whatever)… Talk to whoever you think is listening and ask them for help. Ask the power greater than you to align your thoughts with love just for today. Following your prayer, add in a five minute meditation. In your meditation recite the mantra, “I choose love over fear, I welcome a miracle.” Repeat this out loud throughout your five minute meditation.

Snack: Make a list of all the people you need to forgive.

Lunch: Start forgiving. Go down the list and send a silent blessing to them all. Say out loud or in your mind, “I forgive you and I release you.”

Afternoon Snack: Send a loving email or text message to someone on your forgiveness list. Keep it simple. If you’re having a hard time forgiving just write, “I hope you’re having a great day.”

Dinner: Make a list of everything in your life that you’re grateful for that day.

Late Night Snack: Pray again. Thank (God/Universe or whoever you speak to) for another beautiful day. Say a prayer for anyone in need and everyone on your forgiveness list. Turn your day over and set your intention for a peaceful night sleep.

Like any great diet, true transformation will occur with daily repetition. Begin with a thirty day commitment to start seeing some positive results. By choosing to follow the loveatarian plan for the next thirty days you will begin to reprogram your thoughts from fear back to love. If you dig the results, stick to the plan and commit to a life as a loveatarian. Trust me you’ll feel much lighter!

?Carpal Tunnel?

2009-08-15T21:41:00.001-07:00

I went to see my new neurologist last week and adore her. She asked me about 101 questions, looked me over quite extensively and did random tests on my arms, legs, hands and feet. For starters, she thinks I may have carpal tunnel. I get to wear these fashionable arm splints to bed. I'm so excited about that. She will perform an EMG on me in two weeks. Here's a low down on what it is:

Electromyography, or EMG, involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study. Because both tests are often performed at the same office visit and by the same personnel, the risks and procedures generally apply to both tests.

Muscular movement involves the action of muscles and nerves and needs an electrical current. This electrical current is much weaker than the one in your household wiring.

In some medical conditions the electrical activity of the muscles or nerves is not normal. Finding and describing these electrical properties in the muscle or nerve may help your doctor diagnose your condition.

EMG may aid with the diagnosis of nerve compression or injury (such as carpal tunnel syndrome), nerve root injury (such as sciatica), and with other problems of the muscles or nerves. Less common medical conditions include amyotrophic lateral sclerosis, myasthenia gravis, and muscular dystrophy.

Then she questioned me about my headaches/migraines. Whoa! That's not the reason why I went in but she thought a brain MRI would be helpful. Hmmm...I was supposed to get that done and a PET scan during my last scans but it didn't happen. She didn't quite explain to me the need for a brain MRI except to check out my migraine or headache that occurs about once a month which I find it to be more hormonal based. Went in to check on my tingling hands and may need to check my brain after all...

Of course, I googled carpal tunnel when I got home. Possible causes includes: being female (check,) family history of hypothyroid (mom has either hypo or hyper need to ask her but maybe check,) diabetes (check uncle passed away from it,) obesity (I'm not obese but even more reasons to get over my plateu,) and hormonal changes (check after good ole chemo and Tamoxifen.) I'm not liking the idea of carpal tunnel but it seems fairly manageable. Maybe acupuncture may help? Change the way I type? Hopefully I'll learn more after my EMG. Will keep you posted.

Neuropathy

2009-07-17T12:49:00.000-07:00

I don't think I ever touched on neuropathy. This is the definition I got from the Mayo Clinic website:
Peripheral neuropathy, in its most common form, causes pain and numbness in your hands and feet. The pain typically is described as tingling or burning, while the loss of sensation often is compared to the feeling of wearing a thin stocking or glove.

Neuropathy is very much real. I experience a mild form during chemo, mainly a side effect of Taxol and mainly in my hands. I remember getting it more often at night time because I had a hard time sleeping. About a year ago after driving a few hours from Houston I had it in both hands/arms. I think gripping the steering wheel for so long may have triggered it.

It hasn't been so bad until the past few months. It comes and goes. There are no patterns. That's one of the reason why I wanted the PET scan which I never got due to my insurance. The rest of my scans came back negative besides for a herniated disc in my back. I've made an appointment to see a neurologist in a few weeks. My oncologist doesn't think it's related to post chemo effects but it's noticeable enough that I rather get it checked out.

All in all, I'm feeling pretty good. My hair is growing longer and I'll have to post a pic next time. I'm still working hard to get off my plateau but I'm just thankful that I haven't gained anymore weight. My sleep is still sporadic but I'm going to keep trying. This summer makes it 3 years post chemo! Overall side effects of Tamoxifen is fairly manageable which is good since I have 2 more years of it.

Losing hair with laughter and tears

2009-07-08T09:48:00.000-07:00

Losing your hair can be almost as devastating as losing your breasts. I'm three years out of treatment and my hair is finally at a length that I like. Being bald wasn't so bad but rather growing it out was tough.

I never had a hair shaving party or took pictures when it was getting shaved. I did have a loving purple hair lady share many stories with me, cracked many jokes, showed me many pictures and gave me a large hug when it was all over. I cried days prior to having it done because seeing the clumps of hair falling was so devastating. No tears for me that day I had it shaved. My mom did but it was short lived. I guess it helps when you have a loving purple hair lady smiling at you.

HEALTH
Losing hair with laughter and tears
Bonnie Friedman helps chemo patients face losing hair with a sense of humor.
By Andrea Ball

AMERICAN-STATESMAN STAFF

Wednesday, July 01, 2009

Bonnie Friedman wraps her bejeweled fingers around buzzing, zebra-patterned electric clippers and shaves Donna Johnson's hair to the scalp.

"Is that part too wide?" she says with mock innocence.

Johnson laughs, swallows nervously and tries not to cry.

"Leave it to Bonnie," Johnson says, rolling her eyes and shaking her head. "I knew you'd make this fun, at least."

This might be one of the hardest days in Johnson's life. The 52-year-old Austin woman, who is about to embark on a grueling six months of chemotherapy, is here to have her hair shaved off before the breast cancer treatment takes it.

Anyone can shave a cancer patient bald, but admirers say thatFriedman — a stylist at Pat Painter's Wigs and Hairpieces in North Austin — approaches the job with a rarely seen passion that keeps her clients laughing instead of crying.

"She is almost an Austin institution," said Dr. Beth Hellerstedt, a local oncologist. "Bonnie does an amazing job of providing comfort to patients at the most difficult time."

For 12 years, Friedman, a self-professed "hypochondriac Jew from Miami" who staunchly refuses to reveal her age, has been hosting shaving parties for women undergoing chemo. Just the sight of her violet and white hair, dagger-long nails and rings on every finger is enough to make her clients crack a smile.
She cuts their hair and fits them for wigs. She has given women mohawks, and she's let their relatives shave them. She gives them funny buttons and pink cancer bracelets. She entertains them with off-color jokes that can't be repeated in polite company, much less this newspaper.

"The thing about Bonnie is she is full of energy," said Runi Limary,director of young survivor services at the Breast Cancer Resource Centers of Texas. "She really brings light and humor to the experience in a very compassionate way."

Cancer has always been in Friedman's life. Her mother died of the disease, as did her two aunts. Three cousins and her brother were also diagnosed, but they caught it early enough to beat it. In 1991 — two years after she left Miami to live near her brother in Austin — Friedman had a double mastectomy to prevent any chance of the disease. She later had a hysterectomy for the same reason.

So when Friedman went to work at Pat Painter's in 1997, she helped market the shop as the prime place for cancer patients to go. And when the clients came, Friedman saw them for what they were: scared women terrified of going bald.

"This is the worst time of their lives when they get their head shaved," Friedman said. "They can take the chemo and they can take the cancer. But shaving their hair is the worst."

Amy Huff, 35, was horrified at the thought of losing her hair when she had breast cancer in 2006. She didn't want people looking at her, pitying her, knowing she was sick. But when her dark locks started falling out, she knew it was time to see Friedman.

"Bonnie's there telling you look gorgeous and making you laugh," Huff said. "Given how much I was dreading it, she made it a lot better."

Last week, Donna Johnson, who was diagnosed with breast cancer in April, walked into
Pat Painter's to shave her hair off. More than two dozen friends and relatives joined her to eat, drink, take pictures and cheer her on.

Draping Johnson in a zebra-print smock, Friedman wrapped a bit of hair in a small rubber band and performed the first ceremonial snip.

Then she pressed the clippers against Johnson's head. Chestnut-colored locks drifted to the floor. Friends cheered. Then Friedman shaped the hair into a mohawk.

"I want you to see the side view!" Friedman said. "The side view is hot."
Soon, it was time to shave the rest off.

"Say goodbye!" Friedman said.

As the remaining hair floated to the floor, Friedman unleashed a string of one-liners for the shell-shocked Johnson.
Now you're a Hare Krishna!

Those eyes your mother always said she had in the back of her head — there they are!
Johnson laughed and dabbed her eyes as her friends cheered.

The hard part was over.

For more than two hours, Friedman pulled and stretched stylishly chic wigs on Johnson's head. Like old friends, they bickered over how the hair should look.

By the end of the night, Johnson was laughing without a hint of tears, walking a pretend red carpet and modeling multiple wigs for her friends. What could have been a horrible event, she said, had become something positive.

"Bonnie made it great," Johnson said. "I don't think I could have done it with without her."

aball@statesman.com; 912-2506

"When it is dark enough you can see the stars." (Emerson)

2009-06-23T19:19:00.000-07:00

This month as a difficult month. A friend of mine passed away from breast cancer...my first breast cancer friend to pass away. I've known her for two short years but it was my honor to have met her. Throughout her cancer journey she only exhibit strength and a positive attitude. I only heard her say she was scared once. She fought a hard battle and she's now at peace.

She visited me in my dreams three days leading up to her memorial. Her memorial was standing room only. Covey's second habit that I keep mentioning in my blog is "Begin with the end in mind." What do we want people to say about us at our funeral? Her bright smile and courage was the theme that day. Even though she was taken from us too soon, I find comfort that she made the best of her short time on Earth and touch so many people's lives. She will be missed greatly.

We have a new shining star, a new angel with a heart of gold.

Notes from the FORCE conference in May 2009

2009-06-08T14:23:00.000-07:00

4^th Annual Joining FORCES Against Hereditary Caner

Conference on Hereditary Breast & Ovarian Cancer 2009

What’s New for BRCA +/Hereditary BC Survivors

BRCA1 typically triple -, poorly differentiated, high grade, ck 5/6, ck14+, EGFR+, cyclin E+, little DCIS, basal like
BRCA1 did just as well with nonBRCA with chemo
BRCA1 85% protected w/oopherectomy; BRCA2 50%
Those with oopherectomy should still get CA125 once a year

Risk Reducing Salpingo-Oophorectomy

Fallopian tube and ovary should be removed to combat disease by 80-90% & 50-60% reduction in breast cancer
Open surgery with traditional laparotomy is 2-4 day hospital stay, 4-6 weeks recovery; Minimally invasive surgery with conventional laparoscopic or robotic assist is outpatient with 2 week recovery
Thorough inspection of peritoneal surfaces with saline “wash” to get samples; staging can be done at this time
Robotic da Vinic less pain, faster recovery, improved surgical vision, dexterity and ergonomics (better for longer more complex surgeries; basic laprascopic best for oophorectomy only)
Most gynecological oncologist should be qualified but it takes a team effort, 20-20 operations is considered experienced

Inconclusive BRCA Test Results

Tested w/normal results but w/cancer- 1.) BRCA is 95% accurate & Myriad will run BART testing if you have over 30% family risk; most insurance will NOT cover BART. 2.) Another Gene HNPCC (ovarian) or PTEN (breast) or an unknown gene. 3.) Could not be genetic but combination of genes and environment
Cancer free person w/normal results- 1.) Test missed mutation 5% chance. 2.) Another gene involved. 3.) Could not be genetic. 4.) Could be BRCA in family but 50% chance
Variants-1. Suspectous deleterious, 2. Suspected polymorphism (fairly harmless,) 3. Variant of uncertain significance
Look at family history, genetic tendency but can be environmental too, SNIP test to decode and insurance should pay for it

Breast Cancer Prevention: Nonsurgical Approach to Risk Reduction

Intraductal access nipple lavage
AI, nanoparticle Herceptin, gene therapy and parp inhibitor though need to determine dose and long term study
Delay menarche with physical activity and as a life long activity
Reduce inflammation
Tamoxifen

Management of Ovarian Cancer Risk

CA125 is elevated in only 50% of stage 1 cancer; better for recurrence following, false positives common; have more done to define correct number for self; 35 is normal
Transvanginal US can lead to more unnecessary surgery but also accounted for most early stage dx
HE4 released in Europe and good for those with large mass and to use in conjunction with CA125; waiting for FDA approval though likely to be approved this year in US
First 10 days of period to have transvaginal US has less false positive
Chemoprevention: oral contraceptives (pill seems to be better vs patch), Fanretinide, Vitamin D3, Aspirin, motrin, etc
Begin ovarian screening between 30 and 35; screening every 6 months; oophorectomy between 35 and 40

Blood test P53 if less than 35 with breast cancer and test negative for BRCA may ask for this test

http://www.lbl.gov/Education/ELSI/Frames/cancer-genes-f.html

Scans are Tomorrow

2009-05-20T18:50:00.000-07:00

I have my biannual scans tomorrow...my insurance will cover everything but my PET. They will determine whether or not I need the PET after they get the results of my CT. It makes sense to them for me to have to take an extra day off of work, drink the gross barium and to have to stay with a no carb diet. I know that I should simply be thankful that I have insurance but it makes me realize how everything with our insurance company boils down to $$$. A PET scan is over $6000. That is a lot of money but they are saving a boat load of money if I DON'T have to have chemotherapy again. I'm trying to stay positive.

The FORCE conference was last weekend in Orlando, FL. I'll be working on my notes and posting it on here. It's rather interesting and very helpful for those that are still considering prophylactic surgeries. The above picture is me with Dr. Susan Love! It was an honor to hear her speak and to chat with her afterward! Great things in our horizon!

By the way, my CA125 test went down to 18! Woohoo! Again, not the most reliable test but glad it went down. Also, they said at the conference that a good age to have your ovaries removed is 35 to 40 if you're BRCA positive. Buying time!

Finding Strength

2009-05-05T18:36:00.000-07:00

People come into our lives for a reason, a purpose. A met a colon cancer survivor my age almost a year ago, stage IV. She almost didn't make our gathering because she was not feeling well. Minutes later, she dropped by to say, "Hi" and was gone within half an hour to meet her family for dinner. Within that half an hour, I found much strength and such great energy from her. We've emailed off and on and ran into each other several months later at another cancer function.

Fast forward to today: She just passed away. I'm filled with sadness. I didn't not know her that well but she managed to touch my life in many ways. I think back on the day I met her. She wasn't feeling well but she came out to meet other survivors. She didn't feel well but she went out to dinner with her family. Life is about moments. She created these moments even when she wasn't feeling well.

My CA125 level is slightly elevated. This is a tumor maker test to see if higher amounts of this protein is present which tends be be concentrated in ovarian cancer. This this is not the most accurate of test. Ovarian cancer is hard to monitor, hence the name "Silent Killer." 0-35 is the normal range. My last test was 38, slightly elevated. My doctor feels it's normal since I have an ovarian cyst. I believe in being proactive. I've asked to have my CA125 retest. My next set of scans are coming up soon too. Send me positive energy and I'll keep you posted.

GRAPHIC III 2009

2009-04-21T17:58:00.000-07:00

A sampling of some amazing bras from Graphic III on April 18, 2009 at the Design Center at Penn Field. My bra is the first row third one from the top.A sampling of our silent auction with a focus on art and entertainment. The pink bracelet is MissBeverly Design by Kim Curtis. The metal bra is made my Barr Jozwicki, Katie's dad.

Music this year was provided by Patricia Vonne.
Our emcees Kinky Friedman and Crestina Chavez. Crestina is an anchor woman with News 8 and our new board member. Her mother passed away from breast cancer.

My Cowgirls gearing up for the runway. Phew! What a long but successful night! You're looking at tired Cowgirls! Graphic III is about strength, beauty and survivorship.