Staying Connected from Diagnosis through Survivorship: 7 Ideas to Guide Your Way

Thank you to the Laura Mann Center for Integrative Health for inviting me to share this post on their blog.

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.” ~unknown

What is life without connections? Staying connected to our family, our friends, even ourselves—it’s what grounds us and brings us joy. Not only do connections feel good, they keep us healthy. Michael Lerner writes in his comprehensive guide, Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer, “ . . . human studies show that feelings of isolation and loneliness have a detrimental effect on physical well-being, as measured by immune function.”

Humans by design seek out connections, and most of the time we’re able to maintain and contribute to the relationships we’re part of. Enter chronic illness. Enter cancer. We don’t necessarily control life events, but we do choose how to respond to what life brings us. When detours strike, it’s easy to feel stranded. Alone. But as science and experience indicate, times of deviation are the times when we most need others by our side.

In April 2012, my new primary care provider detected a thyroid nodule. Two months prior, my previous provider had dismissed my symptoms as “stress” and did not physically examine me.

Discovery of the nodule began a three-month odyssey that included ultrasounds, two biopsies, back and forth battles with my insurance company over my decision to go out of state to access genetic testing on the second biopsy, and more tears and late night Google searches than I can document here. The journey culminated with surgery on July 11, 2012. I went under still not knowing if the mass was cancer. Four hours later, I woke to my surgeon’s words, “It’s cancer.”

I’m now a “survivor.” But survival is not a destination. It’s a journey, one I carry out every morning and afternoon when I take my thyroid medication that supplies the life essential hormones my thyroidless body no longer produces. I carry it out when I go for regular blood work to see how my body is doing with these synthetic hormones. I carry it out every moment of every day when I try to define for myself what being “well” means and how I will care for myself moving forward.

Since thyroid cancer affects approximately 11 out of 100,000 individuals, thyroid cancer awareness is substantively lacking. This translates into numerous providers telling me that I had the “good cancer,” and it also means that the research, the funding, and even the understanding of all the nuances of thyroid cancer and life without a thyroid just aren’t where they should be. It would be easy to feel alone, but I’ve found that remaining in touch is literally life saving.

I’d like to share seven ideas that have helped me transform this initially challenging journey into a life-affirming one. Perhaps they may resonate with you as well.

1) Honor your story.

For the first few months after surgery, the “it could have been worse” mantra held me back. In my head, I focused on the more intensive treatment I may have needed, but didn’t, and on other, more challenging scenarios I didn’t have to face. But this thinking kept me from accepting help and asking for it.

Healing, while often an internal journey, can also mean a willingness to allow others to help you on your healing journey. Part of my healing came from accepting my own journey and realizing that there was no value in comparison. I stopped minimizing and I began accepting the help offered and asking when I needed more.

2) Find care providers who care.

One of the positives that came out of this experience and the multiple tests, appointments, etc. is that I’m not afraid to go to the doctor anymore. And I’m not afraid to change providers when it’s not a good fit.

I know my surgeon’s tender touch on my shoulder before I was wheeled into the operating room mattered. It affected my attitude during recovery and, honestly, I believe, my outcome. Likewise, my endocrinologist saying to me the first time he met me, “I’m so sorry you’re going through this,” honored my experience and helped me trust in the process of recovery and healing. I stay with providers who treat me like a partner in my care, and who show their sincere concern about my wellbeing. I feel grateful to now have an amazing team of providers.

3) Make real connections.

Sure, you may have 162 friends on Facebook, but when you are going through a life-altering diagnosis, seek out and savor the folks who ask how you’re doing and then wait to hear the answer. Be grateful for these people. You know who they are.

They’re the ones who call when you get home from the hospital. They’re the ones who take your kids for a playdate without you having to ask, or drop a meal by, just because. In our fast-paced world it’s easy to stay “connected” through cell phones and Facebook. But as you heal, consider the deep connections that are sustaining you. Focus on these, and give yourself permission to gently let go of any relationships that leave you feeling disconnected.

4) Put your oxygen mask on first.

We all know this. But it’s true. With two small children, one of the hardest parts of my journey was feeling humbled by my own need for help. In the hospital for surgery, it was strange to think of my sons at home, without me, while I lay in an operating room. I felt useless. I felt scared. I felt utterly dependent on others.

My counselor through the cancer patient support program advised me early on to ask each day, “What am I doing for my healing today?” This question has proved pivotal to my healing. It motivates me to be kind to myself and look out for my needs, whether through a yoga class, sleeping in, or simply saying “no” sometimes.

And I think this is a valid question for any individual, healthy or not. What are you doing for your healing today? If you don’t feel that “healing” applies to your situation, apply the word “wellness” instead. What are you doing for your wellness today?

5) Find the pearl.

There are days when my diagnosis makes me feel flawed and downright sad. But, I can choose to savor my cancer, even meet it with gratitude. A devastating diagnosis may push us to break open or fall apart . . . and if we allow ourselves to look at what’s inside, we can choose to meet what we find with love and be with ourselves in that moment, in the middle of that sadness. There is healing to be found simply in taking an experience for what it is and letting ourselves move through every step that comes next with awareness, whether the next steps include fear, anger, disappointment, loss, or anything really.

I don’t think I’ll ever welcome the follow-up ultrasounds to my neck, the regular blood work, or even this new life of navigating a chronic illness. But I am thankful for a journey that is trying to teach me to be kinder to myself and mirror that kindness back to the world.

6) Take what works, leave the rest.

Reiki, yoga, acupuncture, marathon training, mindfulness meditation, writing, knitting, a hike, or simply going for a walk . . .

Healing is as individual as one’s body. There is no right way to heal. At first, I read any book I could about cancer, thyroids, thyroid cancer, healing, alternative treatments, really anything that might apply to my situation. But in the same way that 100 choices at the grocery store for the same item can actually cause stress, sometimes there is stress in the process of choosing how to best facilitate one’s healing. Surgery was the first step of my healing, but the real work began when I woke up. What do I do now? What do I change/not change moving forward? How do I avoid coming down this same path again? Is it even avoidable? For me, healing has been a bit about doing less, searching less, and looking deeply at the options before me and choosing what resonates with me. Then engaging in these options and letting the search for answers recede. For me, two practices particularly sustain me: writing, which I’ve been doing since I was a little girl, and, new in recent years, yoga. I should note that it’s worth trying something more than once before you decide if it works for you. I tried yoga once in college and did not enjoy it. I waited more than 10 years to try again.  I love it now, and it serves my healing for a multitude of reasons . . . including strength, mindfulness, and overall well-being. And, perhaps the best reason of all, as one of my teachers likes to remind us, “Yoga is the cessation of the fluctuations of the mind.”

7) Quiet body, active mind. Active body, quiet mind.

When my first biopsy last spring was inconclusive, it was recommended that I wait six weeks and have a second biopsy. While sitting for mindful meditation can be a healing practice, sitting all day for work, or to drive, can lead to a busy mind that likes to craft all sorts of worst-case scenarios for every possible life path.

Therefore, when I start thinking too much, I go for a walk. And sometimes I ask a friend to go with me.

My personal healing links:

Cancer Patient Support Program:

Patricia Fontaine’s Healing through Art and Writing:

Roz Grossman, Mindful Stress Relief:

Stowe Weekend of Hope

Survivorship Now:

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