Dancing with NED

Women with breast cancer have an expression:  they want to "dance with Ned."  Ned, for my young friends, is an old-fashioned name like Elmer or Chester that will probably never become stylish again. Yet, for those of us with breast cancer, it is still the sweetest name on the planet.  It stands for No Evidence of Disease.

Most women (and men) with early stage cancer become NED as soon as their surgery is completed. Even if they have chemo, it is preventative in nature, an extra dollop of treatment, just in case a cancer cell is floating around where it shouldn't be.  With today's statistics (which don't include the new treatments) approximately 75% will stay cancer-free for the rest of their lives. Those 75% experience a clinical cure, although the tricky thing is they don't know it, and that's why you will hear a Stage 1 women say,  "there is no such thing as a cure for breast cancer." They are wrong and right at the same time. They may be cured, but until they take their last breath, dying of old age, they can never be sure they are in that group.  Since cancer can return at any time, (hence the other 25%,) the only word for their situation is NED.

This means that people who've had early stage breast cancer live guarded lives. Knowing the chance for recurrence is there, they examine every ache and pain.  "Is this the throb that means cancer has come back?"  It helps to understand that the longer you live, the less likely cancer will return, that the statistics are old and don't include newer therapies - but worry comes with the cancer territory. The major goal of early stage patients past treatment is to learn how to live good lives, even with uncertainty.

They must train themselves to thrive with ambiguity and not let anxiety take hold. That is the lesson of their disease.

But those of us who are metastatic?  We know the end.  We have plenty to worry about, but cancer returning is not one of those things.  That already happened.  Conventional wisdom states that metastatic cancer is incurable.  Our goal is to live day-by-day and love life, even when diminished or sick, without imagining a future.  A goal I feel I have managed fairly successfully.

Early on, when I was chosen for a liver resection, I believed I could end up NED, but since cancer returned after the surgery, that hope was gone.  Statistically, I was following the same course as all with mets do.  Progression.

When I heard that I was getting this surgery, I had a bracelet made for myself, that said "Heal.  Cure.  Prevail."  It was to remind myself I had a future.  I was so disappointed at the relapse I took my bracelet off.  Now,  I only wished that my disease would remain stable and not take over and spread like wildfire through my body until my son graduated high school.

I made that graduation.  And, so much more.

I'm dancing.  I had a PET scan earlier this month, and a doctor's appointment a few days ago that confirmed that disease is not visible.

Did you hear that?  In case you didn't:  

I'm NED!

My bracelet is back on.

Everyone is thrilled. My implacable doctor was happy, my nurses hugged me, an assistant cried. My radiation oncologist's assistant just called me today.  I unfortunately missed the call, but her voicemail was sweet. She sounded thrilled as she said that it looked like the only place we'd be seeing each other again was the grocery store.

I'm a happy surprise rarely seen in this world of progression and death that they deal with every day.

Those of you who have seen me dance know that I stumble, trip, and jerk like a Elaine on Seinfeld episode. Awkward would be the kindest word for my dance moves, and yet, Ned asked me, of all the deserving people out there, to bust a move with him. Right now, I feel as graceful as a prima ballerina.

I'm Metastatic.  And, I"m NED.  Rare, beautiful and incredible.

Who knows who long this lasts? Maybe, just maybe, I can be like the early stage gals and get remission forever.  Maybe, like I posted about long ago in more wishful times, there is a chance to cure metastatic cancer.

More realistically, this is a lovely pause in the course of my disease.  One has to be sensible.  This disease could come raging back.   But it might not for a good while.  We all hear those stories about women who live ten, fifteen, even seventeen years with mets.  They are rare, but they exist, and perhaps I will join their ranks.  Perhaps I will join the ranks of the unstudied, the unknown, and die in my 80s, of old age.

Now, like the early stage women, there is an element of uncertainty to the course of my disease. Unlike them, I love it and welcome it with open arms.

I will remain on Herceptin and Perjeta for the near future.  But I have joined the land of the living. I can plan for months into the future, I can work on getting my body in better shape, and many other things that I'd not thought about in five years.  It would be jumping the gun to say I am able to imagine college graduations or weddings or grandchildren still long in the future.  I can't think that way again - something stops me.  And, maybe I never will be able to again.  Maybe I should never try.  That way leads to heartache and there are zero studies showing that women can live a normal lifespan with metastatic breast cancer. But certainly, as my brain adjusted to living life in 3 month increments and not having a future, it will adjust to being able to plan a bit farther ahead.

I already have.  However long I get in remission, dancing with Ned, you can believe I am going to make the most of it.  Now is the time to work on my bucket list, before cancer does come back and I get sick again.  I've been given a reprieve, and I'm going to enjoy life to the fullest, as much as I can afford to do.  I've already scheduled a trip to see my best friend in Utah - it's been 13 years since I've been out there.  I'm planning a small California vacation before my son goes off to college, including visiting my grandbaby, taking my son to see the Mystery Spot, and mostly taking the city of Solvang up on an invitation to visit with them.  I have always wanted to go there and see that charming little Danish town plopped in the middle of California.

I don't have the money for luxury trips; never have.  I have a child starting college which is going to take all of my small inheritance from my father's death and what I've managed to collect in my Paypal account from you kind people,  and that's as it should be.  I don't need luxury or Europe. As I've learned, being with friends and family is the luxury, whether it's home in California or the turquoise waters of Tahiti.  

I have pain.  I am still tired.  I have been through a lot.  My nerves have been damaged, my shoulder has never healed.  My stomach muscles are painful and weak, many positions cause cramping.  I can't eat without pain.  There have been too many surgeries.

And I could not be happier.

My doctor said to me, "Now that you don't have cancer, I want you to weigh 100 pounds."

"Now that you don't have cancer."  From an oncologist.  Wow.

I'll do what he says.  Eating more is my next goal.  Finding a yoga group for those of us left in pain or disabled is also on the agenda.  (Sacramentans, let me know of one)  Eventually, I will be try to get off the pain meds.  I still need them - but there is no cancer.  Will I always?  Do I have a problem?  Will this turn into an addiction blog?

I am not going to worry that cancer will return.  The lesson that metastatic cancer taught me is to live for today and enjoy this moment.  Tomorrow is a dream that may never come.  But now, I can at least think about short term plans.  

And, that is exactly what I will do.

Starting with this dance.



Pause or miracle?  Either one, I'll take it.