Final fill update and implant exchange surgery scheduled

I’m the worst blogger, I know. I’m sorry. I moved into my new apartment in September and I still don’t have Internet, but I don’t want to get it until I get a TV, which should be around November 10. For now, I have to mooch teh Interwebz off of work and my friends. But it is really awkward to post a new blog entry at work, when all of my blog posts have pictures of my boobs. It just doesn’t seem like the best idea, you know?

Let me update you on my breast reconstruction status: I had my final tissue expander fill with Dr. Festekjian on October 4. He filled each expander up to 700 ccs of saline. My expanders can hold up to 750 ccs, but Dr. Festekjian discouraged me from filling anymore. He said that the expanders already felt very firm and that the skin was tight, so more saline could be painful for me.

Stopping at 700 ccs was fine with me; I’m (at last) happy with the projection of my tissue expanders. You can’t see much of a difference between 650 ccs and 700 ccs, but here’s a comparison:

My implant exchange surgery is set for Monday, November 19, which is the Monday before Thanksgiving. I’ll be taking Monday, Tuesday, and Wednesday off work, then Thursday and Friday are vacation days. I should be back to work the following Monday.

Here’s me and my 700 ccs of saline on each side!

Last Wednesday was Breast Reconstruction Awareness (BRA) Day at UCLA Medical Center. I went with my mom and Bryce to show some love for Dr. Festekjian. I’m actually really glad we went; I didn’t think I’d learn much, but I asked Dr. Da Lio (another plastic surgeon) about the differences between silicone implants and “gummy bear” implants.

I’ve been hearing a lot about gummy bear implants lately, and I wanted to know what was so great about them. Dr. Da Lio told me that UCLA does offer gummy bear implants (a form of very dense silicone implants), but they are not yet approved by the FDA so patients who opt for them must participate in a study. He said they’re firmer than silicone implants and that they retain their shape when cut. But the negative is that they are not a perfect circle (unlike other implants); if they flip around under the muscle, the breast shape will change. They are not guaranteed to flip, but Dr. Da Lio said that upper body exercise could make it happen. I like to kayak and I want to get into weight lifting, so the risk of gummy bears flipping is there for me. Silicone implants it is!

I’ll be going in for a pre-op appointment with Dr. Festekjian on November 8. I already know that he is going to order a few different sizes of silicone implants for me, but hopefully he’ll give me some idea of the actual numbers and sizes.

Once my implant exchange surgery is done, I should be finished with surgeries. Since I had a nipple-sparing mastectomy, I don’t need to worry about nipple tattoos. But when I was at BRA Day, I met a tattoo artist named Ruth Swissa who does medical tattoos for breast reconstruction patients. Her work was AMAZING! She had a bunch of temporary 3D nipple tattoos. They looked SO REAL. She had one on her arm and if I didn’t know anything about mastectomies or breast reconstruction, I would have been really freaked out by it because it really did look like she had an oddly-placed nipple! To any of my readers who are going to have nipple reconstruction: email me if you want a few of the nipple tattoos! I snagged some and would gladly mail a few to you.

OK, I’ve been mooching off of my friend’s Internet for too long. Happy Halloween, everyone! I leave you with this picture from Saturday evening of Bryce and me. Can you guess who we are?

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Talking to your kids about cancer

This is a guest post written by mother, two-time breast cancer survivor Shirley Horn. I don’t have Internet access in my new apartment, so I haven’t been able to post lately. But I’ll update you all soon! For now, enjoy my mom’s writing.

Decisions about parenting are like decisions about breast cancer treatments:  only YOU know what’s best for your children and yourself, regardless of what any of your close or not-so-close relatives or friends have to say about it.  When you’re faced with a disease as daunting as cancer, how to tell the kids is one tough part of the process.

My husband is Jewish and very traditional in his cultural and secular views. “Don’t tell the Kinder,” is a phrase I’ve often heard in our 24 years of marriage. (“Kinder” is Yiddish and German for “children”.) With my husband and his generational peers, it’s a deeply held belief that children should be allowed to keep their innocence as long as possible, unburdened by the woes of the world. When Rachel was very young, it seemed a good mantra to uphold and I wanted to protect her from everything that was bad or sad.

Shirley and Rachel in 1990 in England

We had just moved from Massachusetts to California when I was diagnosed the first time.  My daughter was 9 and she was settling down in our new neighborhood and making friends in her new school. Although she was a bright and precocious fourth-grader, we chose not to share the news with Rachel until we knew as much as we could know about my cancer and treatment plan. Since I had a lumpectomy rather than a mastectomy, it was an outpatient procedure and although we told her I was going to have an operation, I was home when she got home from school that night and functioning fairly normally. A couple of weeks after the surgery, we were off to a family reunion to celebrate our old uncle’s 80th birthday.

Chemo is, of course, a different story, and one not easily hidden. If the sight of Mom going bald isn’t enough to scare the wits out of a child, watching Mom with her head in the toilet heaving her guts out several times a day for a couple of days every week will certainly do the trick. (Or at least make your kids think twice about eating Dad’s cooking!)

A few weeks before my chemo began, I sat Rachel down one afternoon and explained.  “Mom’s sick.  I’ve got something called breast cancer. That’s why I’ve gone to the doctor a lot lately and went to the hospital last month. I’m going to be OK, but I’m not completely done yet. Soon, I’m going to start taking some medicine that is really strong and powerful.  The medicine is going to make me sick, too, but just for a little while. It’s even going to make all my hair fall out, but it’s going to make me better so the cancer doesn’t come back.” I think I said a few more things and then I asked Rachel if she had any questions. She said, “May I have a cup of tea, please?” That’s when I knew she’d be OK, too.

Rachel went wig shopping with me. We made a day of it and went to a cool shop that had a large selection of wigs and hats. She had fun helping me try on the wigs and she even got to try on a few. Together, we selected my wig (which I ended up wearing only once) and we each picked out a cute hat. She was part of the discussion when I decided to get my “G.I. Jane” haircut before chemo began, and she defended my honor when the kids at school teased her about having a bald mom.

We were fortunate to have several wonderful friends (mothers of Rachel’s friends) who pitched right in and drove carpool, brought over meals and invited Rachel for sleepovers during my treatment. Rachel herself maintained a cool and calm composure; I don’t ever remember her showing fear or being upset. If she was, she never let me see it. Even at 9, her protective instincts were there.

How old should a child be before you suspend the “Don’t tell the Kinder” rule when it comes to something like cancer? Not every 9-year-old child is capable of handling the Big C with the poise and maturity that Rachel showed. Your 7-year-old may absorb the news and deal with your illness by becoming Florence Nightingale and never leaving your bedside. Let your motherly instincts and intrinsic understanding of your child’s disposition guide you.

I found that being straightforward with my daughter and involving her in the process was the best course of action then.  12 years later, when my cancer returned and I discovered that I carry the BRCA 2 gene mutation, it was still the best course of action.

Shirley and Rachel at graduation in 2012

Shirley Horn is a retired marketing professional living in Redondo Beach, CA. She is an avid paddler for the Los Angeles Pink Dragons, a breast cancer survivor dragon boat team. She is also an artist and sells her work, along with custom-made mastectomy drain pockets and pit pillows, on her online store Precious Survivors.

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!