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 Cure Magazine and The Huffington Post, contributor at Positively Positive, 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.
I was recently honored to appear on "Courage and Grace: Stories of Remarkable Cancer Survivors.” The teleconference was hosted by Dr. Shani Fox, holistic physician and certified life mastery coach.
During our 55 minute discussion, we covered many issues, including cancer survivor's guilt, feeling alone, finding support, the pinkification of October, living and healing through gratitude, and my Gifts & Losses List. I was thrilled during the question and answer period to connect a caller looking for caregiver resources to two amazing people, Rob Harris of Rob Cares and Sara Barton of Practical Caregiver.
If you want to listen in, you can find the recording here. (You can download the recording onto your computer if you want to listen in at a later date.) Also, if you want access to future teleconferences, sign up here.
As I said about my appearance on the Survive and Live Well Radio Show, "I've learned that the more I talk about my life after treatment, the more I feel validated and healed. I hope listening to our conversation does the same for you."
No, this time the drama was raging inside my head. I get very quiet on these occasions. I don't share the test anxiety (dare I say panic) I'm feeling with the technicians. I just keep my head down and fight off tears, hoping they won't notice.
I ask myself what I'm afraid of, because I really don't think I have breast cancer. Of course, that isn't the point. I'm reacting to being sent back onto the front lines after having barely escaped with my life (and losing a body part.) More pointedly, I didn't expect to hear the words, "you have cancer" four years ago either.
I wince as the mammogram compresses my last remaining breast into a pancake. The technician apologizes and I feel like a baby for revealing weakness. As I struggle to hold it together, I wonder if the pain is actually as bad as it feels or if my anxiety creates an expectation of pain every time I walk into one of these rooms.
Three pictures and it's over. I sit outside and wait, and wait and wait, feigning interest in a People magazine. Finally, she returns to tell me I don't need to go back for another round of pictures (as I have done every year since my mastectomy.) Instead, I'm going to go into another room with the ultrasound technician.
I have a love/hate relationship with ultrasound. For the first four years we tried to have a baby, I associated it with the grief of a confirmed miscarriage. With my daughter and son's pregnancies, I came to associate ultrasounds with the joy of seeing my unborn children in the womb. I try to sooth myself with those memories, but the fact is I'm back to dreading the darkened room.
The technician swirls on the lubricant and probes. Hard. I'm surprised by the pain and again worry I'm being a baby, but a part of me doesn't care. I just desperately want this to be over and, when it seems like it's been going on for 10 or 15 minutes, have a moment where I fear I might yell at her to leave me alone. Of course, I control my flight or fight reflexes and remain quiet.
Again I wait for the radiologist, who walks in and tells me "Everything is fine, we'll do this again next year." I know this is good news, but all I want to do is escape. I say my goodbyes, trying to sound chipper but feeling limp. I make my way to the parking lot, exhausted and sore. Surprisingly, my neck and shoulders also hurt.
Here's the thing. I tried for the past few weeks to avoid thinking about today's testing. I confessed to my husband yesterday how I dreaded it (I surprised even myself when I teared up,) but still wanted to keep it all under wraps. I was resolved to keep my head down, not talk about it, not write about it and just go into it and out again with as little commotion as possible.
Then, in the waiting room this morning. I couldn't be silent. I grabbed my phone and wrote on my Facebook page, WhereWeGoNow as Cancer Survivors. Once I got home, I turned on my laptop and this is what I found:
Twenty-one comments wishing me luck, peace, good thoughts, hugs, prayers and hope! Twenty-one women letting me know that "sisters understand the nerves" and "are behind me all the way."
Maybe the technicians I saw this morning didn't understand my test anxiety, but each one of these women let me know for certain that they "got it." I'm not a baby and I'm not weak. I'm a member of the sisterhood which, once again, has proven the importance of "Me too" in my life.
A reader recently wrote an email seeking my opinion on a controversy, opining "I am sure that you have thought about this . . . a lot." I've struggled with how to respond because, ironically, this controversy brings up issues I've actually tried very hard to avoid.
The controversy is laid out in a New York Times article. Are premalignant conditions such as DCIS actually cancer and should these conditions "be renamed to exclude the word carcinoma so that patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast."
It's the word "unneeded" that's caused me to avoid diving into this issue until now. Did I submit to "needless," "disfiguring and harmful treatments" for "premalignant and cancerous lesions that are so slow growing they are unlikely to ever cause harm?"
Did the mere hint of cancer compel my doctor to "biopsy, treat and remove it" at "great physical and psychological pain and risk" to me? Was I in fact a victim of "overdiagnosis" and "overtreatment?"
Now that I've allowed myself to think about it, here's where I come down: When it comes to whether DCIS is medically cancer or not, I am not qualified to have an opinion nor do I care what you call it. As a patient, all I care about is getting individualized medical care which, given the witch's brew of DCIS, LCIS, atypical hyperplasia and micro-calcifications I had in my breast, I believe Igot.
Just as importantly, I also want individualized emotional care, which I did not get. Every technician, nurse, physician's assistant and doctor I spoke to before my mastectomy told me I was "lucky" to have found my DCIS early. No one ever mentioned the emotional downside of my diagnosis. With only the word "lucky" ringing in my ears, I concluded I was not going to die, which was excellent news. But, I also concluded I had no right to any feelings of loss, anger, fear or loneliness. I didn't know how I fit into the cancer community, if at all, and didn't seek out support because I believed I had to accept my "luck" and just get on with it.
Much later, after I had my mastectomy and found support at my cancer center, I was overwhelmed by an especially egregious case of DCIS pooh-poohing. As I wrote about in an earlier blog post, the technician who performed my first mammogram post-surgery argued with me that DCIS was not breast cancer. To further drive home her point, she told me she knew a woman with DCIS who also had a mastectomy, "so she wouldn't have to worry about it anymore." What I heard her saying right to my face was, "You didn't have cancer so get over it."
If we decide DCIS and other premalignant conditions are not in fact cancer, will we avoid unnecessary treatment? Or will we just manage to further alienate people who struggle with cancer emotions but have the added burden of not feeling worthy of those emotions? In fact, if we decide today that DCIS is not cancer, do I have the right to continue calling myself a breast cancer survivor? If I do not, what then do I call myself?
This is a complicated issue and I don't have any answers. All I know is that I absolutely was "lucky" to avoid chemotherapy and the fear of dying from my diagnosis. Yet, I still wrestle with cancer emotions and sorely needed the emotional support services I eventually found at my cancer center.
Maybe I do care what you call it. All I really want is to make sure all patients get individualized medical and emotional care and support. If we need to use the word "carcinoma" to get them (and me) that level of care and support, then maybe we need to keep using it.
We talked about many issues, including how gratitude affected my healing after cancer, the importance of seeking out support and sharing your story, and experiencing cancer anger (or, why it's sometimes necessary to throw something.)
If you missed our live discussion, you can listen to it at your convenience by downloading it here.
The business of thriving after cancer is not an easy one. I've learned that the more I talk about my life after treatment, the more I feel validated and healed. I hope listening to our conversation does the same for you.
If you're interested in listening to my other live appearances, head over to my Video, Radio, Articles page to check them out.
"The way you think, the way you behave, the way you eat, can influence your life by 30 to 50 years." Deepak Chopra
Cancer has a way of changing your perspective. Many of us are more aware of the need to make better choices about the food we eat. Two young cancer survivors, Annette Ramke and Kendall Scott, took it a step further to become certified holistic health coaches using nutrition to fight cancer and regain control over their lives.
I love that the book is written in two parts. Part One, "The Girlfriend's Guide," makes this book so much more than a cookbook. Imagine having a friend who has been where you are and is willing to take you through the process. Annette and Kendall share their personal stories and talk honestly about alternative medicine, creating a cancer team, losing your hair, the loneliness of cancer, scars, friends, and the healing power of real foods.
Part Two, "The Recipes," features over 100 recipes from smoothies to leafy greens. The recipes are simple, clear and make your mouth water. Under each recipe name, Kendall and Annette share specific benefits of the recipe, such as Blood Boosting, Brain Boosting, Fatigue Fighting and Adrenal Support, Detoxifying, Mood Balancing and the like.
This is a book I wish I had read when I was facing diagnosis and treatment. It's a sensitive, honest, real guide to getting through cancer and a lifelong kitchen companion for anyone looking to reduce their risk of cancer in the future.
Below are two recipes I tried and enjoyed:
Fennel String Bean Salad
1 pound string beans, ends trimmed
1 fennel bulb, trimmed
1/2 cup radishes, trimmed and sliced
2 tablespoons extra virgin olive oil
2 tablespoons lemon juice
1 garlic clove, minced
1 teaspoon salt
Dash of freshly ground black pepper
Cut the string beans into two-inch pieces and place in a steamer basket or metal colander in a pot with about one inch of water. Bring the water to a boil and steam for five minutes, until just cooked through. Cut the fennel bulb in half and thinly slice into bite-size pieces. In a a small bowl, whisk together the oil, lemon juice, garlic, salt and pepper to create a dressing. Place the string beans, fennel and radishes in a large bowl and toss with the dressing.
Gingerly Carrot Soup
2 tablespoons olive oil
1 large sweet onion, chopped
1 leek, well rinsed and sliced in rings
2-inch piece fresh ginger, finely grated
1/2 teaspoon ground cinnamon
1 pound carrots, scrubbed with ends removed, and chopped
Juice of one orange
2 to 3 cups vegetable stock
1 tablespoon miso
Freshly ground black pepper
In a stockpot, heat the oil over medium heat. Add the onion, leek and a pinch of sea salt and saute until the onion is soft, about five minutes. Add the ginger and cinnamon and saute another 5 minutes, stirring constantly.
Add the carrots, orange juice and enough stock to cover the carrots. Bring to a boil; reduce heat then simmer, covered, until carrots are tender enough to pierce with a fork, about twenty minutes.
Turn off the heat, and puree with an immersion blender. Remove a small amount of the soup (about 1/2 cup) and mix it with the miso in a small bowl. Add miso mixture to the soup and warm on low heat for several minutes. Check a spoonful for seasoning adding pepper as needed.
I love making soup in the fall and will make the Gingerly Carrot Soup again very soon. Give the recipes a try and get the book if you want to know more about Kicking Cancer in the Kitchen.Let me know in the comments below how you've changed your eating habits since your cancer diagnosis.
Survival > Existence,
Disclosure of Material Connection: I received the book mentioned above for free in the hope that I would mention it on my blog. Also some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, I will receive an affiliate commission. Regardless, I only recommend products or services I use personally and believe will be good for my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”
WhereWeGoNow does not provide medical, diagnostic or treatment advice.
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This page contains “affiliate links.” This means if you click on the link and purchase an item, I will receive an affiliate commission. Regardless, I only recommend products or services I use personally and believe will add value to my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”