Race to Beat Cancer to the Chase
By Claudia on April 19, 2010 | Category: Claudia's Blog | 9 CommentsOn May 8th, I’m running in my first race! And for what better cause than to fight ovarian cancer, which is the deadliest and hardest cancer to detect in women. After five relapses, my grandmother passed away from this brutal disease in June 2007. And I have her genes.
Teal Ribbon for Ovarian Cancer
I also have her breasts and ovaries, in a sense. Sounds kind of weird, but I feel so connected to my grandmother through these parts of my body because I know they’re made of the same stuff, the same common genetic thread. But our shared BRCA1 gene left her lady parts (and mine) completely defenseless to cancer. That is why she had breast cancer at 60 and ovarian cancer almost too many times to count.
To get technical, my BRCA1 mutation means that I carry up to a 54% risk of developing cancer in my ovaries, the single most defining part of my femininity. I’m all too familiar with 50/50 chances. Since my dad tested positive for his mother’s mutation, I knew that I had a 50% chance of also inheriting the gene that killed my grandmother. It was a coin toss. And the odds did not turn out in my favor.
I’m not willing to take risks like this again. I have enough risks already. So I’m going to lace up my bright pink running shoes, ready to bolt at the sound of the gun. I’ll be racing for my life.
In the meantime, however, my breasts remain my number one priority. The plan still holds to have them removed and exchanged for new saline boobs by the end of the year. I’m still researching doctors and setting up consultations with surgeons in June. Last month, June seemed forever away. Now it’s almost next month! Since I’ve made up my mind to have the preventative double mastectomy, I wish I could fast-forward through the next few months to the point when I’m wearing the thin hospital gown, feeling the anesthesia take hold as I lay on the operating table awaiting my new cancer-free breasts. I can’t wait to have a surgery date to mark in big, bright, bold pink letters on my calendar.
Since beginning this blog, I’ve come into contact with so many wonderful women from across the country. Last Monday night I received a phone call from a 27-year-old woman in New York City who recently had the prophylactic mastectomy and reconstruction. “Claudia, once you decide to have the surgery, just do it!” she said in the sweetest, most compassionate voice. Four months out from surgery, my new friend could not be happier with her new body. Last year she married the man of her dreams, and now she lives with the reassurance that her marriage will not be cut short due to breast cancer.
My new friend shared her experience of surgery, recovery and reconstruction with me in full detail, as I insisted. She changed doctors at the last minute after seeing a friend’s beautiful, round, perky breasts that just so happened to be entirely fake. After surgery, my new buddy awoke to find A-sized breasts. The surgeon took out everything inside and then the plastic surgeon inserted some hard, bumpy expanders. “They’re kind of like balloons,” she said. The reconstruction began immediately, and she was only flat-chested for a split second while still on the operating table. After four hours of extensive surgery, my friend emerged from the operating room with less than 1% risk of breast cancer.
Even though the medical crew left her a bedpan, she was able to creep along to the bathroom and do her business as usual. “The doctors wanted me to begin moving as soon as I was able,” my friend said. Within three days, she was out of the hospital. The doctors sewed drains to her chest wound to collect fluid, and she was able to remove them after 10 days. Three weeks after her surgery she was walking (carefully!) on the treadmill.
The three months of expansion were the worst part of the entire experience, she warned. The balloon-like expanders were rock-solid and bumpy, so her breasts did not look or feel like they would with the saline implants. The plastic surgeon would inject my friend’s expanders with more and more saline until her skin stretched enough to naturally hold the C-cup implants. Since I think I want to remain a C, I will probably go through the same expansion process as my friend.
Well, my friend said, this takes a lot of expanding! Before her exchange surgery last week, she was a double-D!!! I think I’ll tip over with those X-rated breasts. Hopefully I’ll look like a cartoon for only a week before my expanders are exchanged for the normal-size saline implants. However, for that week, my roommate already said I’m not allowed to leave the house. My best friend suggested I go to Vegas.
Doesn't Dr. Heerdt look so smart and nice? Maybe she'll be the one to save my life!
My new buddy also provided me with loads of incredible references in the high-risk medical field. Most of these doctors are in New York at Memorial Sloan-Kettering Cancer Center, one of the premier cancer institutes in the world. I’m meeting with her surgeon, Dr. Alexandra Heerdt, at 8:30am on Tuesday, June 1st. The next day I have a consultation with her plastic surgeon, Dr. Joseph Disa.
While I’m excited to see what Georgetown has to offer, some pretty divine signs are pointing towards Sloan-Kettering. First of all, Dr. Heerdt and Dr. Disa both take my insurance! Over the course of the past week, more and more women have sung this center’s praises to me. The founder of Be Bright Pink, Lindsay Avner, had her double mastectomy and reconstruction done at Sloan-Kettering. So did several of my other girlfriends in Be Bright Pink. They all have nothing but wonderful things to say about this center, the doctors, and the staff. I also like the idea that doctors like Dr. Heerdt and Dr. Disa have performed this procedure on so many young women. That’s really important to me.
Meanwhile, I am truly overwhelmed by the love and support of the young women with new cancer-free boobies who warmly reach out to me, bearing everything. My new friend even sent me photographs of her breasts during the different stages of expansion. Since she decided to keep her nipples, the only scarring she has is a barely-visible line circling the bottom half of her nipple. Through these slits, Dr. Heerdt took out most of the breast cells with bad BRCA genes, and Dr. Disa replaced them with the expanders. Now these tiny scars are so faint it would take a vigilant doctor to realize what took place. “You wouldn’t even need to tell a boy on a date that you have fake boobs,” she said, “he’d never know.”
Even though I’ve never met my new friend in person, she said she’ll come visit me in the hospital when I’m post-op. And this woman meant it. I know I’ll be seeing her beautiful, smiling face in the recovery room next to my long, white hospital bed. How incredible to have such a strong bond with women who I’ve never met. My new friend and I have only spoken on the phone for an hour, and I already feel like we’re sisters. As pre-vivors to cancer, all of us BRCA women are a band of sisters. And what better sisters – each so heroic, so courageous and so compassionate. I can’t thank you all enough for sharing your stories, your bodies and your love with me. I feel so blessed.
9 Responses to “Race to Beat Cancer to the Chase”
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Jodi Kreizer
September 3, 2010 at 2:26 amWords can’t even begin to express how touched I am that I was able to have such a big impact on your life. Claudia, I think everything happens for a reason… I’m not someone who typically reads or responds to blogs, but when I saw yours, I was compelled to reach out to you. Being able to share my experience with you and tell my story makes it all worth it!!!
My father’s best friend sent me a very emotional and powerful letter last week. He lost his beloved daughter, Rachael, to brain Cancer when she was only 25 years old. It’s been almost 6 years since her passing, but it deeply affects him every single day. I want to share some of what he wrote me with you and your readers.
“You have gone through a stage in your life that has bridged the before and after. Now that you are in the after, the issue is not to try and understand, “why me?” or “how did this happen?”, but rather, ” what do i do with my life to show that I am thankful that I successfully made it through my personal struggle?” That is your choice; but what a great choice it is. Living until you are 90, making a living and having had good health may seem like a right of passage. But how you live and the people whose lives you touch, is the measure of a meaningful life. So, i wanted to pass on to you a little of my life’s experience.”
He ended his letter by saying….”Make each day count, touch someone’s life, do good deeds and make footprints in the sand. Now take that experience and run with it.”
I can honestly say that I feel like I’ve touched your life and made a difference when it counted the most. I will be by your side every step of the way and I’m honored to be a part of your journey.
With love, respect and admiration
“Your new friend and friend forever”
Jodi Kreizer
Claudia Gilmore
September 3, 2010 at 2:28 amJodi, I’m also a firm believer that everything happens for a reason, and I think the divine definitely had a hand in our meeting! Your story has not only brought me tremendous peace of mind, but it had also helped my family and friends bear through this with me. You’re pretty famous among my family and closest ring of friends 🙂
I’m also so incredibly touched by the letter you shared in this comment. Tomorrow I’m going to write this in a journal to carry with me, especially as I prepare and go into surgery. His words have come from such unimaginable grief but bear such beautiful compassion and strength.
I’ll try and tap into his strength and your own as I brace myself for this big life change that’s just around the corner. You’ve done it yourself with a grace and fortitude that are impossible to put to words. Jodi, you’re a role model to me and so many other young women – I’m so glad you found me!
You’ll be hearing from me soon (I have more and more questions as the days pass!)
xoxoxo,
Claudia 🙂
Teri Smieja
September 3, 2010 at 2:29 amBest of luck in your race! That’s awesome! Speaking of awesome..the sisterhood you find yourself surrounded by – I don’t think I would have made it through my process in quite the same way without them rallying to my side.
So glad to have met you, and have yet another sistah!
You CAN do this! 🙂
Marilyn Michaels
September 3, 2010 at 2:29 amThis is an amazing testament to the courage, intelligence and sheer will of spirit of these amazing young women. May we all learn from and share their heartfelt stories. They are amking a true difference in the world as we know it now.
Marilyn Michaels
Claudia Gilmore
September 3, 2010 at 2:30 amMarilyn, I’m so glad you appreciate their stories as much as I do. These women have taught me the true meaning of courage. I wouldn’t be making the decisions I am today if it weren’t for their role modeling. While their words have offered me so much solace, it’s the way that they live their lives, continue on dating, and proudly strut their new rack that have really touched my heart and continue to move me forward in this decision. Their actions and the love that they offer are powerful beyond words and leave me utterly speechless. I’m so glad that their stories have touched you, as well! You go girls!
Susan Gregg Gilmore
September 3, 2010 at 2:33 amYou have always amazed me Claudia — but you continue to do so now more than ever ~ your devoted mom!
Claudia Gilmore
September 3, 2010 at 2:33 amThank you, Mom! I love you, too!!!
Shea
September 3, 2010 at 2:34 amKudos to you. My mom is a survivor of Ovarian cancer. I am so glad to see your interest in it. Keep up the great work. This is a cause I fully support. Good luck.
Claudia Gilmore
September 3, 2010 at 2:34 amThank you, Shea! I’ll be thinking of you and your mother as I run my race on May 8th – tell your mom to keep it up, she’s an inspiration to us all!!