Scans are Tomorrow

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

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

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.

Notes from the 9th Annual Conference of Young Women Affected by Breast Cancer

Sorry for the delay but here's my notes from the conference in Dallas.

9^th Annual Conference for Young Women

Affected by Breast Cancer 2009

Medical Update

• Tamoxifen is the standard for 5 years for those premenopausal.
• ER + Tamoxifen & oophorectomy, AI should not be a standard treatment for premenopausal
• Triple negative with high recurrence after dx but once reach 5 years may possibly be cured

Bone Health

• Causes of breast cancer and bone loss: steroids, chemo, lower estrogen, AI
• Tamoxifen for premenstrual can decrease bone density by 1.4 % a year
• AI can decrease by 2.6% a year.
• Suggestions: premenstrual take 1200 mg of Ca and post 1500 mg throughout the day and on an empty stomach; foods/drinks high in Ca includes milk, yogurt, fortified food, cheese; vitamin D3 1000 IU; weight bearing exercise 30 minutes three to four times a day; bisphosphonates can help improve bone lost
• Premenopausal women should check the z score and post the T score

Navigating Health Insurance

• Individual policies are not subject to HIPAA, regulated by state, must claim pre-existing, can ask for a list of those that guarantee coverage and does NOT look at pre-existing
• Medicare donut hole plan D gap coverage closes donut hole; get gap coverage if need lots of meds; $4600 for prescription once met patient pays 5% of full cost; www.needymeds.com may help
• Pre-existing better to be off of HMO because it’s very restrictive
• Patient Advocate Foundation www.patientadvocate.org or Co-Pay Relief www.copays.org

Sexuality Renewal after Breast Cancer

• Most common sexual problems after breast cancer is lack of desire/pleasure, pain, dryness, and discomfort during sex
• Predictors for low desire after breast cancer is being younger at dx, chemotherapy, relationship conflict and general life stress
• Techniques to enhance desire by identify and promote activities that increase sexual desire: physical sports or dance, intimate talks, cuddling, romance, erotic stories, videos, fantasies, make sure partner knows how to please you, get counseling, change meds that could be interfering, treat any sexual pain or vaginal dryness
• Communication tips: create a safe space and time to talk, choose one or two goals for change, focus on specific, positive requests, avoid conflict about the past, discuss fears of rejection, discuss fears about survival and QOL, be a good listener too

Advanced Breast Cancer: Living with Uncertainty

• Coping activities: making short and long range goals, locate and access resources, identify strengths and weaknesses, remember you always have a choice
• Have a team. List those on your team.
• Live by staying in the moment, focus on priorities and do what you can when you can
• Use self care strategies like journal writing, relaxation, hobbies, reframe challenges and humor

Young Adult Cancer Awareness Week

National Young Adult Cancer Awareness Week

Young adults with cancer face unique concerns. Help raise awareness about this age group’s particular needs from April 5–11.

Finally Put Back Together!

I had my second tattooing on March 3rd, 2009. It's hard to believe but I think I've completed my reconstruction phase and I'm "put back together." I started this journey back on January 2, 2006 when I was wheeled into the operating room to get my first mastectomy. It has been three years and it was three years of pain, joy, and growth.

My spring break of March 2006 was when I lost of first expander. I remember that week so vividly because it was one of my worst spring break ever. I was not able to move forth with any more surgeries until May of 2008. March of 2009 and I'm done! It's a sense of relief for me but it's also a weird feeling since I've felt like I've been under reconstruction for such a long time now!

I recently attended the YSC event last month in Dallas. There are many interesting news and research out there. I promise to post soon.

"Flower Power"

I just finished my art bra. I've named it "Flower Power" because breasts are very much a feminine quality of a woman. The flowers represent that femininity and the power represents how cancer makes a woman so much stronger. I used charms, beads, pompoms and fabric to create my art bra. I've made this in honor of all my amazingly strong Pink Ribbon Cowgirls!