The FORCE meeting, another fill, and the Pan-Mass Challenge Teen Bike Ride

Is it really Sunday evening already? Where did the weekend go?! (Note: It’s now Monday and I am posting this while at work since I don’t have access to the Interwebz at home!) Well, now’s the time for reflection…starting with last weekend!

Last Sunday I attended a FORCE meeting in Agoura Hills. FORCE (Facing Our Risk of Cancer Empowered) is an organization focused on hereditary breast and ovarian cancer. There are chapters all over the country, including a few in Southern California. Until last week, I’d never attended a FORCE meeting.

There were about twenty women present, as well as a few brave husbands. We spent some time mingling and getting to know one another. Trisha was there and since I felt like the awkward new kid, I stuck to her. But I did make some new BRCA friends, too! Finally the guest of honor arrived: Dr. Karam!

If you’ve started reading Ticking Time Bombs recently or you’re a veteran reader who hasn’t been taking copious notes on every post, you might need a quick lesson on Dr. Amer Karam. I always talk about Dr. Festekjian, my plastic surgeon, but he is only half of my mastectomy dream team (I bet you didn’t know there was such a thing!). Dr. Karam is the breast surgeon who performed the first part of my mastectomy in March, removing all of my breast tissue. His official title is gynecologic oncologist; he performed my mom’s oophorectomy in February. We Horns really do like to keep things in the family.

With Dr. Karam’s arrival, we started the actual meeting. First there was a round of introductions; most people shared their name, family history of cancer, BRCA status, and if they have had or are planning to have any surgeries. There were a fair number of women who had already undergone prophylactic mastectomies and oophorectomies, but there were also quite a few who were just beginning to consider surgery.

Check out Dr. Karam’s red shoes…he’s a breast surgeon with impeccable fashion sense. (Photo borrowed from Trisha.)

The Q&A with Dr. Karam was very random and tangential. It seemed that one person’s question would inspire a new question from someone else, and we sort of bounced around the room for a few hours going from question to question. To be honest, all of the talk about breast cancer bored me—it’s really not on my radar anymore since my mastectomy! But I did find the discussions about ovarian cancer and breast reconstruction very useful.

Dr. Karam is a fantastic resource and I think he helped a lot of women at the meeting. He knows how to explain complicated scientific concepts in much simpler, easy-to-follow ways. I felt very proud to tell people there that he was my breast surgeon! It was almost a sort of “hahaha my breast surgeon is better than yours neenerneenerneener sticking my tongue out at you” moment.

The best part of the FORCE meeting was the breast reconstruction “show and tell” at the end! I felt relieved that my tissue expanders looked similar to those of other women at the meeting. And I got to see someone’s “finished product” which made me even more excited for my implants—hers looked amazing! A few of the ladies who are considering prophylactic mastectomies were very impressed by what they saw…my tissue expanders included. I think it’s very helpful and reassuring to see that the final outcome of a horrendous surgery can look so fantastic.

On Wednesday morning I had a tissue expander fill with Dr. Festekjian. I’m now up to 650 ccs of saline on each side, and I can certainly feel more tightness. We talked about what I want in an implant. I am most concerned about projection. Dr. Festekjian mentioned that style number 45 gives the most projection, but those implants are more narrow so they usually look best on people with a small chest. He said the next best option is style number 20, which my mom has.

Just for reference, this is what a tissue expander looks like.

And this is what a silicone implant looks like.

I know for sure I will have one more tissue expander fill, putting me up to 700 ccs on each side. I could go up to 750 ccs, but I think that might be a bit too big for me. These tissue expanders are starting to get pretty bulky! Plus, I want to have the implant exchange surgery on November 19, so the final tissue expander fill needs to be six weeks before that date.

Dr. Festekjian said that he will order a few options for implants. During the actual surgery, he’ll “try them out” to determine which looks best. Gee, it sounds like we’re shopping for prom dresses!

OK, now for something completely different: I want to mention the Pan-Mass Challenge Teen Mountain Bike Ride, an event organized by my niece and nephew.

First, a bit of background on the Pan-Mass Challenge: The Pan-Mass Challenge is a bike-a-thon held every summer in Massachusetts. 100% of the money raised by riders is donated to the Jimmy Fund, a cancer research and treatment center at the Dana-Farber Cancer Institute.

My sister Wendy has participated in the Pan-Mass Challenge for twelve years, raising over $127,000 for the Jimmy Fund. This year, my niece Nicole (age 14) and my nephew Matthew (age 16) are stepping up their game by organizing the first Pan-Mass Challenge Teen Mountain Bike Ride, for 13-18 year olds.

The Teen Mountain Bike Ride will be held on October 13 at 9 am in Westwood, Massachusetts. If you know of any teenagers in the Boston area who are in need of community service hours, please let them know about the ride. It sure beats picking up trash on the beach!

Needless to say, I’m very proud of Matthew and Nicole for taking the reins on this idea. The Pan-Mass Challenge is a well-respected event in New England, and there is a similar bike ride for younger kids. Matthew and Nicole saw the need for a ride aimed at teenagers, and they’re making it happen.

Matthew and Nicole, the founders of the PMC Teen Mountain Bike Ride. Just a side note: aren’t they ridiculously good looking?

They’ve always been very receptive and caring kids. This past April, when they came to visit for their spring break, Nicole pulled me aside and asked how my boobs were doing (her words, ha!) Okay, I know that’s not a huge deal, but she’s only 14. (Actually, she was still only 13 at the time!) I was so touched and impressed that she not only understood my choice to have a mastectomy, but that she wanted to check up on me. It’s not exactly a light topic for anyone, let alone a teenager.

For more information, please visit the official page for the Teen Mountain Bike Ride, as well as this article published by a local newspaper. I wish I could be there in person to support Matthew and Nicole during this great event. There’s always next year!

 

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My first tissue expander fill is tomorrow,

and I’m SO EXCITED!

Okay, so it’s not my first fill ever–I’m already up to 550 ccs on my right side–but it’s my first fill after losing my left expander to an awful cellulitis infection! I’m just feeling grateful that my reconstruction process is finally underway again.

Last Friday at work we had a “Think Pink” party to raise money for Making Strides Against Breast Cancer, a 5K walk in Santa Monica this weekend. We have a Demand Media team for the event! Needless to say, I’m pretty proud of my company.

The Think Pink party was a great success. There were pink ribbon cupcakes, bottles of rosé wine, pink cookies, raffle tickets and more, each for a $1 donation. We raised over $600 in just an hour.

The coworker who organized the event asked me to share a bit of my story, as a way to remind people that no community or person is immune to breast cancer. I am obviously very open about my BRCA mutation and my mastectomy, so I was happy to speak. The strangest part was revealing my age to my coworkers! If they didn’t already think I was a baby, now they know for sure.

Reflecting on the last year as I told my story was a great reminder to myself about why I made the decision to have a prophylactic mastectomy. I talked about my BRCA mutation, my mother’s cancer diagnosis, my mastectomy, my infection…and then I remembered what my brother said about the choice between “something fatal” and “something fucked up.” I quoted him, and everyone laughed, but it’s such an accurate description.

I closed my spiel by saying that hopefully in the future, the money raised for breast cancer research will make it possible for women my age to not be faced with such drastic choices. Hopefully there will be another option out there.

I didn’t have another option, but I am still grateful that I had some kind of choice. Because even though the last few months have been very trying–especially with the infection–they have been cancer-free. They have been on MY terms. And I am so very fortunate for that.

My amazing coworker Kate organized the party and is also an organizer for the entire walk.

The Making Strides Against Breast Cancer walk is on Sunday, and I’ll be speaking again at that event. I’m very excited to participate, especially since it’s been more than two years since my last charity walk!

When I found out Demand Media was participating in the event, I was ecstatic. It gives me a very warm feeling to work at a company that backs this important cause. My coworkers have been so supportive of my entire situation.

It’s crucial to be a part of an understanding community. I am realizing that more and more. On Monday evening, my mom and I had dinner with Trisha and her mom Linda. Linda flew out from Texas for Trisha’s surgery (which is TODAY–will get to that soon!) Chatting with them over dinner was relieving and comforting. We were able to connect and speak honestly without any judgment. I am so thankful to have them in my life!

I am also happy to be a member of a blossoming web community of BRCA-positive individuals and young women who are taking their health into their own hands. Being able to post random questions (about surgery, mastectomy bras, drains, scars–anything!) and get fast and honest responses is priceless. Social networking is a miracle! If any of my blogger friends are interested in joining these Facebook groups, please send me an email (rachel@tickingtimebombsblog.com) and I’ll add you.

Now, an update on Trisha: her prophylactic mastectomy was today at noon! I haven’t heard from her mom yet, but I’m assuming that no news is good news and that everything is going well. On Sunday I visited her at the Mansion and we spent the afternoon by the pool. I wore my mom’s new kick-ass pink one-piece bathing suit. (Side note: I’m pretty sure I am the only person in history who has ever worn a one-piece at the Playboy Mansion.)

Trisha has such a positive attitude towards her mastectomy. She introduced me to quite a few people at the Mansion on Sunday, and told all of them that I’d already had a mastectomy. That seemed to relieve them a bit; she is well-loved, so people worry about her. In a way, I’m visual proof that a woman can still have a very full and active life after a mastectomy.

Here’s Hef and all of the girls at Sunday Funday. Hef and I matched! He has good taste.

Hopefully I’ll get to visit Trisha in the hospital. I’ll try to at least post an update about her surgery and recovery, so check back for that!

UPDATE: I talked to Trisha on the phone for a few minutes around 7:15 pm! Besides sounding very groggy, she seems to be doing well. When I talked to her, she had been out of surgery about an hour and a half.

 

A recap of Splash for Pink

Long time no post—I’ve been busy! The trip to Oregon last weekend was a great success.

My dad picked me up from work around 4:30 pm on Thursday and I was at LAX by 5:15 pm. Security was a breeze. I headed to the airport bookstore to pick up some reading material and after 25 frustrating minutes of not finding a decent title, I struck up a conversation with another traveler. He was from Australia and was headed home from a study abroad program. He recommended a book to me and we started to chat, and for some reason, we ended up on the subject of health insurance. He told me that his family has a strong history of breast cancer and that his sister might get tested for the BRCA gene.

How random, really! I gave him my blog card and asked him to pass it on to his sister. Of course I told him he was welcome to read the blog too, but his sister would probably benefit from it! (Sam, if you are reading this, thank you for the book recommendation. I finished “Life of Pi” in about five hours!)

I arrived in Portland around 9:30 pm, and Bryce’s flight arrived shortly after. My mom and her friend Arlene picked us up and we drove out to Hood River to my aunt’s house.

On Friday we went on a hike near the foothills of Mount Hood. It was beautiful—so green and lush, a welcome change from Los Angeles! I haven’t been hiking in quite a few months, so I was happy to stretch my legs.

For dinner we went to Everybody’s Brewery in White Salmon, Washington. One of the cool things about the area in which my aunt lives is that it’s on the border of Washington and Oregon. Technically she actually lives on the Washington side, but Hood River, Oregon is just a few miles away. We hopped back and forth between the two states all weekend.

On Saturday morning we drove out to Maupin, Oregon for Splash for Pink! Maupin is a tiny town on the Deschutes River that is best known for white water rafting. My uncle Pat used to be a rafting guide there. I’ve never seen the town that crowded—there were so many people there for the event!

After checking in and receiving our pink t-shirts, we met up with my cousin Justin. I haven’t seen Justin since the early 2000s, so it was a happy reunion. We ate lunch at the event barbecue, which was held at the Imperial River Lodge, a hotel next to the river.

Me and my cousin Justin. Don’t you love his pink shirt?

Each picnic table had a decorative bra for a centerpiece. The bras were designed and donated in honor or in memory of loved ones. I wish I’d known about that in advance, because I would have put together a pretty freakin’ awesome bra for my mom!

I met some representatives from the hospitals and organizations in Oregon that would be receiving proceeds from Splash for Pink. They were armed with quite a few informative pamphlets about breast cancer and breast health. I passed on my blog business cards to them to give to their patients.

I also met a lady named Deb Hart, who is a breast cancer survivor and motivational speaker. She spoke for a few minutes during lunch about her experience with breast cancer, so I found her later to chat. She was sitting with a few other women. I mentioned that I just had a double mastectomy, and all three of them jumped up and started hugging me.

It was great! I felt like a celebrity or something. I explained to them that I did my surgery prophylactically and they were very impressed. One of the ladies, Sandy, even gave me a beautiful tote bag as a gift! Sandy sells hand-woven totes made by craftsmen in Oaxaca, Mexico. My bag is pink and silver and I love it—I’ve been hauling around shoes, my laptop, my makeup, my brush, and my hair products in this bag for the last few days, and it’s very sturdy. It’s waterproof so I’ll be using it at the beach and the lake. It was a really gracious gesture on Sandy’s part! (On a sidenote, if you’re interested in buying a tote bag like mine or just want to check out the other merchandise, the company is called Abrazo Style and the website is www.abrazostyle.com).

Check out my awesome tote bag!

Once lunch was over, it was time for rafting. For the record, our official rafting crew consisted of: my mom, my mom’s friend Arlene, Bryce, my cousin Justin, my aunt Jackie, our guide Lynn, and me. We really wanted Uncle Pat to raft with us, but he has a bad back so he drove the van instead. This worked out well because he stopped and took tons of photos of us.

From left to right: Bryce, Rachel, Justin, Arlene, Pat, Shirley, Jackie

I haven’t rafted on the Deschutes in years and had forgotten how much fun it is—and how wet you get! Next time I go rafting I am definitely skipping the mascara. After just one rapid, I looked like a raccoon, so during a calm section of water I jumped into the river to wipe my makeup off.

One of the best things about rafting on the Deschutes is “riding the bull.” During some “easier” rapids (i.e. not Oak Springs, the class 5 rapid with “meat grinder” and “cheese grater” rocks everywhere), one person sits at the front of the boat, legs out over the water and hands holding a small metal ring. I’m not sure if it’s unique to my uncle’s rafting company or if everyone does it, but I love it. It’s quite an adrenaline rush (albeit a short one) and it really gives meaning to “hold on for your life!”

Everyone on the raft rode the bull at least once. I was lucky enough to do it twice. =D

Yeehaw! Riding the bull through the Elevators rapid.

Just a few minutes after we finished the last run on the river, the rain started. Perfect timing! It poured for about 45 minutes, but luckily the Splash for Pink organizers were prepared for rain. The festivities were moved under a tent. There was a live band, food, a bar, and a raffle. I really wanted to win the pink .22 rifle, but someone else got it. =( Oh well.

Splash for Pink was just a one-day event, so the next morning we headed back to my aunt’s place. We spent the afternoon relaxing and recovering from the rafting. I was definitely sore!

On Monday, Bryce and I flew home to Los Angeles while my mom and Arlene (and Madeline, the road-tripping doggy) drove back to California. Save for a long delay (three hours) at the airport on the return flight, I’d say the trip was a major success.

It was very touching to see an entire community unite in support of such a great (and personal) cause. I am certain that everyone in Maupin, Oregon participated in Splash for Pink. Many local businesses donated auction items, and other sponsors, like the rafting companies, helped make the event a reality by donating their time, space, and resources.

I certainly love my breast cancer charity walks, but hopefully my future will be filled with other innovative fundraisers like Splash for Pink. Does anyone know of any?!

Splash for Pink

Tomorrow evening I’m flying up to Oregon for a fun-filled weekend of river rafting, beer tasting, and boob fundraising! I’ll be attending Splash for Pink, a breast cancer fundraiser in Maupin, Oregon.

Maupin is a very small town (population under 500!) located on the Deschutes River, where my uncle Pat (a former rafting guide) lives. I’ve been going on rafting trips up there since I was very young. Last year, when my mom and I found out about Splash for Pink, we were ecstatic: at last, a breast cancer fundraiser that doesn’t involve our feet being brutally murdered by blisters!

Here’s some information about Splash for Pink from their website: “Come support breast cancer research and patients while you enjoy the fun and excitement of the Deschutes River and the fun of Maupin. Splash for Pink will feature 13 mile raft trips, a delicious BBQ lunch, raffle, silent & live auction, a sand & grass volleyball tournament, a kids’ fun area, poker tournament, live music all day and much more! Rafting and volleyball participants will receive a FREE Pink T-shirt. Be sure to stop by all the local businesses with pink balloons outside as they will have special Pink discounts and deals available!

A free pink t-shirt?! I’M IN.

Mom and I will be joined by my boyfriend Bryce, my mom’s best friend Arlene (another notorious 3-Day participant), my aunt Jackie, my uncle Pat, and hopefully my cousin Justin…oh and of course our trusty rafting dog, Madeline!

Okay, no, the blind diabetic dog is not going rafting with us. But this is her second trip up to Oregon so she’s a seasoned vet when it comes to Maupin.

I’m very excited for this event–hopefully I’ll get to meet some of the organizers. I’m impressed with their ability to create such an enjoyable and buzz-worthy fundraiser.

My blog business cards arrived today (email me if you want an e-card!) so I’ll be bringing some up with me to pass out at Splash for Pink. I have a feeling I’ll meet at least one BRCA+ individual while I’m there.

Bryce and I will be flying back from Oregon on Monday, July 2, so hopefully I’ll be able to post some photos of the event.

Now tell me, dear readers: what’s the best fundraising event (for breast cancer or not) you’ve ever attended?