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Maya Angelou said, “There is no greater agony than bearing an untold story inside you.” The healing power of sharing my cancer story compelled me to found WWGN. I'm an inspirational speaker, blogger at The Huffington Post, support volunteer with Cancer Hope Network, member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, patient educator with Pathways Women’s Cancer Teaching Project, wife and mother, and a former very stressed out lawyer.
In an earlier post, I asked, "How can you talk about survivorship without talking about sex? More importantly, how can you talk about celebrating an inspired survivorship without talking about sex?" My answer to both questions is: You can't.
With stunning frankness, Musser takes us through her personal breast cancer story. She begins the book by sharing practical tips for getting through the diagnostic and treatment phases, including how to assemble a support team, why it's good to cry, and how to manage fear, meditate and breathe.
Of course, there is little time for thoughts of sex and sexuality during the early phases of cancer. It's after, when we come out of the fox hole and feel like "damaged goods" that sexuality becomes a painful subject.
Many women are ill-prepared to deal with the libido, body image and desirability issues compounding their "new normal." Musser's three-part prescription takes you through the inner work necessary to find your inner sexy. Next she teaches you how to communicate your needs to your partner and, lastly, provides sexuality practices and exercises that expand intimacy and pleasure.
Whether she is talking about libido, intimacy, dating after cancer, fertility and family planning, self-love, forgiveness or how to feel sexy, Musser's message is the same. Don't be afraid to focus on your heart, mind, spirit and sexuality. When you do, you awaken to healing, joy and self-celebration and rediscover the magnificent, sexy woman within.
When I think of cancer "anniversaries" there is only one date that comes to mind. April 15, 2009 - the day of my mastectomy.
From September 2008 to February 2009, all I remember is a whirlwind of appointments, tests, biopsies, phone calls, internet searches, crying jags and, finally, a diagnosis. You would think I could remember that date, but I don't. I think I had been through too much for too long and simply didn't have the brain power to commit the date to memory.
I remember fear and a feeling of being in the Twilight Zone. How could this actually be happening? Who are these many, many people swarming all around me? How am I going to feel, look, function – survive - when I wake up?
One year later, I decided I needed to celebrate my anniversary and asked my husband out to lunch. Mind you, I didn't want to celebrate the actual day. No, I was celebrating the fact that I had made it to April 15, 2010. I had managed to create distance from 2009, which included another surgery in September and major emotional issues. It was a major accomplishment that deserved to be celebrated.
That's how going out to lunch with my husband on April 15th became a tradition. Year two we went out again and I considered it "a very good day:"
It is a tremendous gift to know yourself and what you are capable of doing. Once you know it, you can put that faith in your pocket where it will safely stay in case you ever need it again. ... I'll be celebrating my survival, healing and the surprising gifts of cancer.
How do I feel today? I'm not really sure. Initially, I tried to ignore the day and didn't mention lunch to my husband. For the first time, I felt silly bringing it up - like I should be past all that by now. As I wrestled with that feeling, I slowly realized I was on a survivor's guilt trip. If I wanted to go to lunch, I was entitled and shouldn't try to talk myself out of it.
After all that, my husband said he had remembered our tradition, but wasn't able to work out his schedule. Rather than disappointing me, he validated the importance of our tradition to both of us.
I don't know how I'll feel next week when we go out to lunch. Even four years later, it's clear to me that I'm still dealing with a moving target. I shed some tears as I read my earlier cancer anniversary blog posts, but posting to my Facebook page drew many supportive responses. We had an excellent discussion and, once again, the nurturing of other survivors who "get it" teaches me the most important lesson I've learned over the last four years, "I am not alone!"
"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next." -- Gilda Radner
Have you ever been completely satisfied with life? Everything is humming along perfectly, including your job, your health, your relationships, your kids and your community.
Like they say, "It's always something, right?" Annoyances spring up all the time to test our patience. The furnace breaks down on the coldest day of the year, endless traffic gets between you and an appointment, the cable is out again.
That's all small stuff compared to life's unexpected curveballs. For me, there's been infertility, miscarriages and breast cancer, to name a few. I bet you've been thrown a few curveballs too.
Here's the thing: When we face a curveball, change happens whether we like it or not. We may not realize it in the thick of it, but our "normal" life ceases to exist and is replaced by something unrecognizable and euphemistically referred to as the "new normal." That's why they call it life-changing.
So here you are, facing a life-changing event, but that doesn't mean you can accept it. In fact, most people stare into the "new normal" with complete disbelief:
"When will I get pregnant and have a baby like everyone else?"
"How could he leave me?"
"Why does my body look like it got run over by a truck?"
"Will I ever feel safe, normal, happy, healthy, trusting, (fill in the blank) again?"
As painful as it is, you're not wallowing when you ask questions and speak your fears. Introspection brings answers that let us eventually accept that change is necessary. Seventeen years ago, it took just one pivotal question to open my eyes during the most stressful time of my life.
I was at the crossroads of an intense job I didn't like, mothering the toddler who took five years to have, and fearing infertility and miscarriages would strike again if we tried to have another baby. I was burnt out, crying on my way in and out of my law office, and paralyzed with fear. At one point, I theorized I couldn't have a second child and keep my job, so I had to sacrifice the child.
One day, I hit bottom and made an appointment with a therapist. I don't remember anything she said, except for this: "Why do you feel you have to endure?"
That question changed my life. Why was I choosing to stay stuck in a situation that was killing my spirit and the family we wanted? Why did I feel there was strength in enduring the known, when it was fear of the unknown that was really driving my decisions?
That question and the answers it evoked led me on a journey of reinvention. Shortly after I talked with my therapist, I got pregnant with our son. The pregnancy went off without a hitch, and I quit my job after he was born.
Reinventing myself was necessary again after my breast cancer diagnosis. Treatment, body image issues, anger, loneliness and fear breaks a person open. I struggled for a year, all the time religiously meeting with my oncology therapist to sift through the muck cancer stirred up. Finally, I was able to embrace my "new normal" and reinvent myself as a writer and advocate for cancer survivors.
What's the difference between enduring and holding on through a difficult time? You are enduring if:
Living your life is sapping every bit of your happiness.
You get up every morning dreading the day ahead.
Your personality is changing for the worse to the point that you don't recognize yourself.
Your friends don't want to be around you.
You are making crazy deals with yourself. (Like: "I guess I have to give up having a baby so I can keep a job I hate.")
How do you know it's time to stop enduring and face the unknown? Simple. When the fear of "having to change" becomes less awful than the hell you are living, you are ready.
At that very second, you finally understand that enduring the beast you know isn't where we find the juice in life. It's only when you stop resisting change and make the best of the moment, "without knowing what's going to happen next," that the universe supports you to create inspired healing, wellness, and live-out-loud joy.
Cancer and its treatment takes so much from us all. When it took Roger's ability to eat and speak, he had to reinvent the way he used his voice. Don't miss this inspiring TED Talk from 2011. Good bye Roger and thank you for your voice.
Unity is strength...when there is teamwork and collaboration, wonderful things can be achieved. Mattie Stepanek
There's so much to tell, I don't know where to start. Just three days ago I flew home from the 2013 Cancer Treatment Centers of America (CTCA) Blogger Summit in Arizona where so much information was pumped into my head it's still spinning.
First things first: I and the 18 other bloggers who attended were the invited guests (all expenses paid) of CTCA. The public relations department organized and ran the summit and did an excellent job making us extremely comfortable. (I'll tell you about the healthy, beautiful fruits and veggies later.) We were all made to feel very special. But, in truth, I was there because of you.
As a reader of WWGN, you are the target audience CTCA hopes to reach. To reach you, they went out on a limb and invited me in, confident I would be impressed and share that with you. At no time did anyone tell me or even hint that I had an obligation to write anything at all - because I don't. But, knowing how bloggers like to share, it certainly was a good bet.
So here I am sharing my experience in Arizona with you. I was impressed with what I saw and I'll specifically tell you why in this post and future posts down the road. But, and this is a very big BUT, I will never advise anyone that they should go anywhere in particular to get their medical care. That decision is a very personal one which should be made in conjunction with people much smarter than I am. What I write about are only my impressions from a three day, very well orchestrated summit. You must always make your own decisions about your own health care. (Plus, if you're considering CTCA based on its survival statistics, make sure to read this special report on CTCA by Reuters and make an educated decision.)
Now that the disclaimers are out of the way, let's get to it. The words that best describe the vibe I got from CTCA are "whole-person care," "teamwork" and "collaboration." Initial intake of a patient is conducted in one room, where he or she is seen by the entire team. Specialists in medical oncology, radiation oncology, mind-body medicine, naturopathic medicine, oncology rehabilitation, nutrition, pastoral care and survivorship meet with the patient, and then with each other, to map out a treatment strategy that provides for every element of the patient's care.
Personally, I can really appreciate how this Day One, whole-person, teamwork approach takes a lot of stress off the patient. When I had my TRAM flap reconstruction I was told nothing about how to rehab after my surgery. The pain was constant and, after suffering in silence for a full year, I called my doctor and was finally told about therapeutic massage, which worked wonders.
I also learned details about lymphedema I never heard before. We joined farmer Bob McClendon (that's him in the picture) to tour the 25-acre CTCA Hope Springs organic farm and ate beautiful salads, strawberries, edible flowers, etc., etc., fresh picked from the farm. We learned about clinical trials, natural ways to manage side effects, and survivorship and quality of life plans.
Perhaps the most stunning thing I heard was radiation oncologist Dr. Lanceford M. Chong's statement that he treats his patient with "love." Have you ever heard a doctor mention love? I certainly haven't.
I will share more of my CTCA adventure in future posts. (I especially want to introduce you to my fellow bloggers!) For now, I want to emphasize that I whole-heartedly believe in whole-person care. (Teaching new medical professionals to take the whole-person care approach is exactly the focus of the work I do with the Pathways Women's Cancer Teaching Project.) We as patients/survivors need to demand this form of care from our medical providers. If we demand it loudly enough, we will get it.
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