Expander fills resumed, Making Strides, and a bit of promotion

Last Thursday I had my first tissue expander fill since having the left expander inserted on July 30. It was AWESOME–simple joys, right? I was so excited and anxious that I told myself I was going to let Dr. Festekjian do the fill without numbing me up. Of course I reneged on this decision, since I am a baby when it comes to pain and just the sight of the syringe and needle scared me into the numbing cream.

The numbing cream only delayed the process by a few minutes so it was totally worth it; I could barely feel the needle go in. Dr. Festekjian filled up the left side with 75 ccs of saline. We are going to let the left tissue expander “catch up” to the right tissue expander before we resume fills on that side. Right now my left side is at 325 ccs and my right is at 550 ccs. Each tissue expander can accommodate 750 ccs of saline. I anticipate I’ll need about nine more fills (at 50 ccs each) until I reach the maximum capacity.

On Sunday morning, Bryce and I woke up bright and early for the Making Strides Against Breast Cancer 5K walk in Santa Monica. I stayed up late the night before preparing my talking points for the survivor’s speech (or in my case, previvor). Bryce and I both wore Demand Media team t-shirts for the event and pink sunglasses; he looked very sexy in his pair, I must say.

Team Demand Media–I’m so proud to work with these people!

The event was small (compared to the 3-Day walks I’ve done in the past) but very successful and well-organized. There were at least 100 people there, and the sponsors included Demand Media (whoot whoot represent!), Equinox gym, and Go Country 105—my favorite radio station!

My “previvor” speech came after the address by an American Cancer Society rep. Since it was rather toasty outside, I tried to stay concise and upbeat. I ended up ditching my page of talking points as soon as I got up on stage. I mean, who am I kidding? This is MY story—I know it by heart!

I talked about my mom’s multiple cancer diagnoses and how I reacted to each one. In terms of her second diagnosis, I mentioned how angry and frustrated I felt and how many questions I had, and that those questions were all answered when we found out about the BRCA mutation. Then of course I talked about my own decision to have a prophylactic mastectomy, and though I’m fortunate to have that option, hopefully research will make it possible for my future children to have another more “civilized” option. I really wanted to connect a story about breast cancer to the walkers and their fundraising efforts, to let them know that the money they raised was going to help someone in a tangible way.

I walked in honor of my mom and my cousin Robbie.

After my speech, the walk started. We marched around a local park for about an hour; apparently four laps around said park is equivalent to a 5K. Once everyone was back from the walk, Kate (the Demand Media employee who helped plan the event) announced that we’d raised over $18,000! I was very impressed.

Kate did a stellar job organizing the event. It must have been very stressful for her to plan a charity walk while keeping up with her full time job. But she pulled it off and I’m proud to work with her. Good job, Kate!

Thanks for organizing the event, Kate!

Now, onto that product promotion I mentioned in the title of the post. I don’t do this very often so I feel that I’m allowed to include it now!

First off, my fabulous and talented mother Shirley Horn has decided (after much badgering from me) to launch her own online store, called Precious Survivors. What is she selling? Well, that is a good question! CUSTOM DRAIN POCKETS AND MASTECTOMY PILLOWS AND HAND-PAINTED ORNAMENTS! (Gee, that sounds swell!) Inspired by Trisha’s mastectomy and her hunt for a mastectomy bra, Mom created some adorable drain pockets. They have velcro attachments to connect to a mastectomy bra, and they are so colorful and cheerful. And they’re only $6 a pair!

Mastectomy pit pillows made by Shirley Horn

She is also selling handmade post-surgical “pit pillows”, heart-shaped pillows to rest under your arms after a mastectomy. My friend Kim gave me a pit pillow for my mastectomy, and it was perfect; it wasn’t too hard or too soft and my arm rested in the crevice without any pain. The pit pillows currently listed are Hello Kitty print, but Mom will take custom orders for a different fabric.

A portion of all of the sales from Precious Survivors goes towards breast cancer programs, such as the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. Dragon boat racing is a great way for breast cancer survivors to prevent lymphedema, which can be caused by lymph node removal.

If you’re looking for a gift to give a loved one who is about to have a mastectomy, check out the Precious Survivors storefront. Mom created these products based on both of our experiences with mastectomies, so they are definitely patient-approved!

Now onto the other promotion. A few weeks ago I received a lovely email from a woman named Ann Victor, the president of PerfectCami, a fashion company. Recently Ann has designed a line of camisoles aimed at the post-mastectomy crowd. She graciously sent me a few to try out, and I LOVE them.

The camis attach to your bra straps and therefore stay in place when you bend over. I am always worried about people seeing the inserts on my left side; the camis prevent any accidental insert flashing! They also work nicely to cover bra cups and straps. The bras I wore before my mastectomy were underwire and the cups did not extend high up on my chest; the soft bras I use now have more fabric, so it’s difficult to wear any relatively low-cut shirts or dresses without the bra peeking through. The camis hide the bra perfectly.

If you’re interested in ordering any of the camis, visit the PerfectCami website. They come in a variety of colors and styles (I’ve got red lace, black lace, white striped, black striped, leopard and a few more!) and five sizes.

OK, signing off now. I have to get ready for my trip to Vegas this weekend! Have a great weekend everyone.

 

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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.

 

Rachel does the 3-Day

When I was nine, breast cancer didn’t mean much to me beyond knowing that my mom was sick. But as the years progressed, I started to understand more about what cancer was and how lucky our family was that my mom was healthy again.

Part of this understanding was developed from my mom’s participation in the Avon (and later Susan G. Komen) 3-Day walks: sixty miles of walking over three days to raise money for breast cancer. By 2005, she had either walked or crewed five different events.

The minimum age for participation in the 3-Day is 16, so by the time I was 15, I knew I would be participating in a walk the following year. We formed a team of walkers called 4H: Horned Hoofers for Healthy Hooters. The team consisted of me, my mom, my mom’s best friend Arlene, my best friend Lindsey, Arlene’s daughter Erin, and a woman named Barbie who worked with Arlene.

A training walk in San Francisco…Arlene got our team Hooters shirts, and we ran into some of Mom’s walking buddies along the way! (L to R: Lindsey, Rachel, Arlene, Shirley)

It was so nice to have an experienced walker (my mom) to organize all of our training walks. Our schedule was pretty consistent: during the week, Lindsey, Mom and I would try to do at least two short, local walks. On the weekend we would meet as a group to do longer walks. The location of these longer walks often varied: sometimes we would walk around San Francisco and across the Golden Gate Bridge into Sausalito; other times we’d go on hikes around nature preserves in the Bay Area.

Besides training, I also had to fundraise. In order to walk, I needed to raise $2,200. This was the tricky part, but I made it work. I wrote letters to friends and family giving information about the event and discussing how breast cancer had impacted my life. People who wished to donate could either do so via snail mail or online. My friends and family came through with flying colors, graciously helping me to pass the goal of $2,200.

The actual Susan G. Komen Breast Cancer 3-Day was in San Diego in November of 2006. At the start of our training a year earlier it seemed like walking twenty miles a day for three days was an impossible goal to reach, but by the time we made it down to San Diego, it was reality. Five to seven mile training walks had been replaced by sixteen to nineteen mile treks, and we were ready to go!

Team 4H: Horned Hoofers for Healthy Hooters (L to R: Lindsey, Rachel, Shirley, Barbie, Arlene)

The 3-Day was amazing. Seriously, if anyone is considering walking you should do it, it’s so much fun. San Diego was a great location; the walking route was beautiful! And the community embraced us…there were supporters on the sidelines, handing out popsicles, pins, beads–even wine! At night, we camped out in tents. Hot meals were provided for us, and there was even a shower truck!

Lindsey and me, keeping clean near the shower trucks.

Even though my feet hurt and I developed blisters, I kept walking throughout those three days because of the rush of adrenaline I got:

  • People were cheering me on everywhere I turned.
  • There were cute bike cops from San Jose riding alongside us.
  • If I really wanted a break I could hop into a “sweep” vehicle that was decorated with boobs and would drop me off a mile further along the route.
  • The snacks were delicious.
  • Sometimes we’d walk by the beach and see shirtless surfers…Lindsey and I always cheered.

All in all, it was a pretty good deal: raise a couple thousand dollars in order to have the time of your life!

Just chilling with some San Jose bike cops along the route!

Our team loved it so much that we decided to walk again in 2009. This time it was a bit less organized; I was at USC, Lindsey was at UCSB, and Mom and Arlene were in Northern California. We didn’t have the luxury of a consistent training schedule, but we made it work! Our new team name for the 2009 event was Doppelgangers.

Team Doppelgangers, posing with some fans along the route.

Throughout all of the 3-Day events my mom and I have participated in, our combined contribution to breast cancer research has been over $40,000. We couldn’t have done it without the support of our friends and family. All in a 3-Day’s work!

 

Mom goes for a walk

Within one year of finishing chemotherapy and radiation, Mom decided to go for a walk. A really, really long walk. (No, not a long walk off of a short pier–we didn’t drive her THAT crazy!)

In July 2001 she completed her first Avon Breast Cancer 3-Day walk. Surely everyone knows about these type of events now: if you’re one of the few people in the world who hasn’t been on the receiving end of a fundraising letter from me or my mom, you have to at least know that organizations like Susan G. Komen, Avon, Nike and Revlon are really into these “Race for the Cure” and “Woman’s Marathon” events to benefit cancer research.

For months, she trained and trained and trained. The actual walk in San Francisco was three days and 60 miles long. To put it into perspective for those non-walkers: that’s a helluva lot of walking!

She also fundraised. For every 3-Day walk (at the time it was sponsored by Avon; now the Susan G. Komen Foundation organizes the 3-Day) participants must raise a minimum amount of money that is put toward breast cancer research; in 2001, it was $1,900.

She joined a team of walkers in the Bay Area. They met twice a week to train, completing walks all around the Bay Area. At first the walks were short; 5-7 miles. But as the months passed and the 3-Day became closer, the training walks lengthened; 15-20 miles. That’s a lot of water, blisters, and pairs of socks.

The 2001 3-Day officially started on Friday, July 27th in Menlo Park, California. It ended on Sunday, July 29th at Marina Green in San Francisco with a 5 pm closing ceremony. My dad decided we would go into the city that Sunday to cheer on Mom at the end of the walk. I remember how amazed I was by the number of walkers. There were just so many people!

“The Journey Begins” photo from http://www.abekleinfeld.com/Avon%20Walk1.htm

The most memorable part of the experience was definitely the Survivor Circle. At the start of the closing ceremony, each walker was given an official 3-Day t-shirt; most were blue, but the breast cancer survivors received pink shirts. All of the survivors walked into the closing ceremony together. I knew my mom was one of them! A touching moment for an eleven-year-old.

After that first 3-Day in 2001, my mom was bitten by the 3-Day bug. For the next four years, she was either walking or crewing an event:

  • 2002: she crewed the San Francisco 3-Day
  • 2003: she walked the Santa Barbara 3-Day with my aunt Jackie
  • 2004: she walked the San Francisco 3-Day with her friend Skylar
  • 2005: she crewed the San Francisco 3-Day

That’s a lot of walking, and a lot of fundraising! Crew members don’t walk (they handle all of the behind-the-scenes work that makes the event fun for the walkers), but they still have to fundraise. Between all of these walks (and the two she did with me; see the later blog post), my mom raised $35,000 for breast cancer research!

You can put a number on the amount of money raised, but the memories a 3-Day walker has from the event are priceless. Aww, cheesy, I know.

For further reading about the event, take a look at these two articles from 2001 in which my mom is quoted:

Training together for 60-mile trek from the Pleasanton Weekly

Sole mates band together for breast cancer walk from the SF Chronicle (I see what they did there with the title hahaha)