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January 18, 2014

When the Diagnosis Comes: First Things First. ~ Kathryn Rutz

“I am not going to die from this. Not now, not yet.”

That was my second thought after the doctor’s phone call—my first thought was only sound, a numb buzz in my head. “Cancer?” was the only thing I could blurt out, and it felt like an expletive.

It was impossible that I should have cancer because I was comparatively young, had kids that needed care and was swamped by a job built on deadlines.

The doctor provided more information about the pathology report, including detail that pushed me farther down this rabbit hole: follicular thyroid cancer, not the most common, more surgery, close to metastasis. Oh.

I didn’t feel. All this news was sitting in my head, a big pile of strangeness that I couldn’t identify as being either hot or cold. I had no feelings about this at all. Those came later.

My reply was calm. “Oh. What do we do next?”

And this is what I learned.

1. Pause. Just breathe for a moment.

There are people to call and plans to make and scenarios to consider, and there is  time for all that. But hang on a second and just be still. It will likely be noisy in your head. Terrifying, too. You may be shaking so take a moment to say inside your body instead of your head—feel how your feet are on the floor, pay attention to your breathing, notice the temperature of different parts of your body. Fear is, in part, your ego-self trying to take care of you, but ego-self doesn’t have all the answers yet.

2. Now you know.

Diagnosis fills the hole in your imagination so you can now work with knowledge instead of speculation.

3. Bless your body. It has not failed you.

Your body works at all times to achieve equilibrium and balance, and to sort out whatever is going on in there. It follows cues that come from injury, ingestion, movement,  lack of movement, thoughts and emotions, and external conditions. No matter what kind of noise and intrusion it’s battered with, your body is trying to adapt.  Hold your body in as much tenderness as you can manage while these parts of you—your heart, your mind, your bones, your blood—cope with profound changes.

4. Who needs to know?  Who can help you?

Consider who needs to know in this first pass of information sharing, particularly if there is a need to move quickly. You may want to withhold details for a time as you digest this information and plan your next steps. You may want to share information unexpectedly. Immediately after the diagnosis I had to go to  New Orleans for a business trip. I was feeling spent and alone so during a lull in his performance I announced to a busker—in his gold suit and sharp shoes he stood on the corner and sang like an angel—“I have cancer.” I don’t know why I did this. His girlfriend held me as I wept. Their kindness was soft as velvet and incredibly patient. That memory was sweet, portable comfort in the weeks that followed.

5.  Take someone with you when you speak with medical professionals.

As you get second opinions, schedule new visits or whatever else is indicated for your best treatment, take someone with you when speaking  with medical professionals. Everybody hears different things and the more ears you have listening on your behalf, the more likely it is that you will capture all essential information. Someone to assist you in formulating questions can also be immensely helpful.

6. Get more information. Research is your friend.

Will you benefit from experts away from your hometown, and do you have the means to get there? Are you inclined to proceed with standardized medicine, complementary and integrative medicine, or assorted modalities in combination? I’ve taken both paths and was grateful to have choices.

7.  Explore new resources. 

A friend gave me a copy of Kitchen Table Wisdom: Stories That Heal by Rachel Naomi Remen, MD. It was among my earliest introductions to the mind/body connection and reading it was like cracking open a window after months of winter.  As I read, her ideas began to seep in and slowly blow away the thick, stale air of assumptions about “how things are.”

8. Honor your intuition.

If you have an impulse to say or do something a bit unexpected, pay attention to  your intuition. The whole of you is on high alert so it’s reasonable to expect that your intuition is also engaged. Listen lightly, keeping in mind that intuition doesn’t shout. I was backstage at a music festival and felt compelled to ask a performer about the nature of her recent but not-public diagnosis. She was too generous to treat my question as rudeness. This singer gave me key information I hadn’t heard before, and it changed the whole course of my treatment. I had no idea, before I asked her, that we were dealing with the same kind of cancer. It may be that I owe her my life, in a manner of speaking.

9. Care for your body in the most basic ways.

This is not the time to neglect your sleep, your diet, your thoughts, your breath. The work you’re doing in your changed and challenged body is stressful, so also consider what works for you in dealing with stress: Can you go outside?  Can you sit in prayer and meditation?  Should you rest? Can you work fewer hours? Your job at the moment is to find the right balance of forward motion and self-care, and your agenda may change daily.

10. Let people care for you.

Some of us find receiving (as compared to giving) very difficult in general, but  get over it.  One friend brought a complete Thanksgiving dinner in what looked like 25 individual Tupperware containers. Another made me a quilt covered with little pockets in which people slipped prayers written on small pieces of paper. I kept the quilt on my hospital bed even when the room felt hot enough to toast bread. I leaned into their kindness as if it were scaffolding that helped keep me upright.

11. Your family and friends may be terrified.

They will have their own ways of dealing with this, and some of those ways may be unpredictable. I’ve seen anxious witnesses to illness dive into science as if knowledge of every clinical trial would save them. Others determined that a sick mom would be helped most by ignoring illness in every possible way. When a person is unwell, the whole of their tribe is also affected, and they all have to start dealing with this from wherever they are, physically, emotionally and spiritually. There is no place else.

12. Forgive the confusion and missteps of those who reach out to you.

You will hear people say things that don’t help, but it’s very hard to know what exactly is the right thing to say. Their responses aren’t personal, and in some ways their comments aren’t even about you. They are dealing with the diagnosis in whatever ways they can, and some of those ways will be clumsy. Bless them for trying.

13. Notice everything.

The department head at Johns Hopkins Hospital who worked with me always wore loud, brightly patterned socks.  I loved them. When I think of him now, I picture him from his feet up. I still recall the faces of some of those who shared waiting rooms with me. I sometimes felt as if I was living ahead in an uncertain future, but I was only ever in those waiting rooms with others. I was not alone, but some days I had to make an effort to notice this.

14. What makes you laugh?  Besides the fact that it feels good, evidence shows that laughter has tangible, positive effects on your well-being. Laughter at times like this isn’t denial or confusion; it is like opening curtains to feel warm sunlight on your cheek.

15. Stuff changes.

After surgery I started spelling phonetically (what?), and  I also began to see colors differently.  It isn’t that I saw new colors, but I surely noticed them as far more than background noise. Red seemed to come through first but then I was drawn to see rainbow shades everywhere. I have no idea what was up with that.

16. Pray.

You have a lot to say right now. The assumption behind prayer is that the benevolent Holy can hear and respond. I prayed…a lot: sometimes in wordless groans, sometimes in detail in case God needed help to know what to do, sometimes I just said, “I don’t know what to do next. Please help.”  Things happened.

17. You now hold the keys to the kingdom.

None of us will remain in these bodies forever. Those of us who get close to the edge from illness or injury are given to know, with sharp clarity, the truths that most avoid out of fear:  the only moment is this one. Anything precious to me is now a diamond (and I see that I am in a sea of diamonds!). Most of that stuff that runs through my head in army boots  is insignificant. Work anxieties are simply challenges in a reality television show.

The bad weather stirred up by emotional drama—even when it’s clothed in ‘importance’—is just weather.

Now I see.

Even when we don’t have the financial means to move through the now-common bucket list, that’s okay because everything right here, right now  is different. To breathe is a wonder. To move is a gift. And the colors…how did I not notice that wherever I look, I am seeing shades of every blue, orange, purple, yellow, white, red, black, green and freakin’ magenta?

Even the winter landscape outside my window tells me more about the color gray than I can ever describe with words.

In this singular, precious moment, we are alive.

And we are alive in a solid, mysterious, humming material world. What is this planet? These  towns and forests and bedrooms and creekbeds? It is astonishing to be here at all. I have toes. Chipmunks have babies. Grass pushes through sidewalk cracks to grow. When I eat pomegranate there is that first bright ‘pop’ in my mouth and then the tang.

There is so much—to be awake is like seeing an active  volcano for the first time—so much fire and change, so much power underground. To pay attention for 10 minutes is  to live in slack-jawed wonder.

My diagnosis wasn’t the valley of the shadow of death. It was a brass band. I wish the same for you.

Here is a bonus video for you. I listened to this song by Cliff Eberhardt on headphones hundreds of times so that it became the soundtrack of that time. It provided perspective, and it was one of those gifts from the universe that asked, “Are you ready?” I replied, “Not yet.”

 

Relephant reads:

The Cancer Family.

An Open Letter to Cancer.

What Cancer Patients Can Teach Us About Living. 

 

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Editor: Bryonie Wise

Photo: Sun Woman by Rennett Stowe, Flickr Creative Commons

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