Tuesday, June 24, 2014

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.


51 comments:

  1. "Thrive with ambiguity " I live it and love it! Dance on Ann.

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  2. Enjoy your dance with NED, and may it last for a LONG time!

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  3. Spectacular news!! I'm so very happy for you.

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  4. Ann you are amazing! I hope you'll keep on writing your blog so we can keep up with you. Enjoy your "NEDNESS" love and best wishes for the happiest times ahead...

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  5. Congratulations! and long live NED! I too am dancing with NED right now but it's only been a year since I was diagnosed with mets so still early on the game. Your journey is an inspiration please continue to write.

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  6. I already jumped for joy on Long Island when I saw this news. I Am THRILLED that you are NED, that you've responded to the treatment. I'll continue to jump because this is such awesome news. Being involved in everything I got myself into, as you already know, I've seen much. This news has brought me so much joy, my friend. Much love, AnneMarie

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    1. AnneMarie, we know the same people and have seen the same things....and so why am I the lucky one? So many of our friends never even got the rest I'm getting, whether it's permanent or not. Makes me sad.....wish everybody had a magic Perjeta/SBRT bullet....

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  7. May your relationship with NED be long lasting and fulfilling! I myself am intimately involved with NED and by good fortune and by Herceptin, we have been tight for six years now. I was diagnosed with Stage IV inflammatory breast cancer from the get go, but NED and I started a meaningful relationship after my initial treatment and he has never left my side. I do not contemplate a life without NED and I make plans for my old age which is fast approaching. NED and I are going to sail into the sunset together. I hope he accompanies you until you are old and decrepit from natural aging processes.

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    1. That is great news Joanna! Where had your mets spread to? I am not sure my doctor is going to keep me on these drugs forever but we will see.

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    2. When first diagnosed, I had small mets to my lung and I had positive lymph nodes bilaterally (which is not considered to be a good thing because it means the mets were at a distance) and a supraclaviclar node. I have been on Herceptin for six years and my oncologist thinks I should stay on it forever or until it doesn't work.

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  8. Such happy news for you, your family, and for people like me - your readers.

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  9. big congratulations on the NED!! I'm one of the "early stagers" and have been NED for almost 6 years - but as you've mentioned in many posts I know it could come back any time but I chose to listen to your other advice to move on and put the disease in my past although that is quite difficult with all of the stories about those who have been NED for 5, 7, 11 years and end up with Stage IV... good news is, oh, you!

    I loved to see this:

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

    I hope that you get up to that 100 pounds - my suggestion, and what I lived on through chemo, was See's candy - any chocolate covered nuts... I went through 1 - 2 pounds a week... and it was just darn yummy!

    Hugs and prayers for you to stay NED for many, many, years. Pause, miracle or just good and new science - either way, as long as it is working - walk on!

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  10. I think you and Ned should go vegan and eat so many fruits and veggies that Ned turns green and sprouts a carrot top!

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  11. This is good, great news!

    As for yoga in Sac - a friend just told me about Wellness Within in Roseville. If you google them you will see all they have to offer for people with and recovering from cancer diagnoses. In downtown Sac there is the Yoga Seed Collective - not specific to folks with/recovering from cancer but they do good work and offer many different kinds of yoga classes throughout the week.

    I am keeping you in my thoughts and wish for you every happiness. Thank you for sharing your news. It gives me hope that just because I happen to have a metastatic diagnosis does not mean I can't continue living my life and looking forward.

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  12. Wonderful, wonderful news!! Long may it continue.
    With love,
    Ann in England
    xx

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  13. No way!!! Really??? Oh I'm so thankful for these happy tears! So so thankful!! You've given me hope for my niece too, besides joy for you!! Wow!!! Long and EXTREMELY long may your dance with NED be!

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  14. Pretty damn good! Keep dancing with Ned!

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  15. How wonderful! So happy for you, what a day brightening read! Wishing you and NED a long and happy relationship together!

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  16. As someone who has followed your journey since reading that article about you in the paper a few years back, reading this post brought tears of joy to my eyes. I hope that you dance with NED for a long time, and tell us about your adventures!

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  17. Been hoping and waiting for this [for what seems like] forever. Way to go, Ann.

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  18. Amazing news -- congratulations!

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  19. This news makes me so happy! May you keep your new partner for a very, very long time.

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  20. Incredible news! May your dance last a long long time :)

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  21. I'm sooooo happy for you! Long may it last!!!

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  22. Wonderful news. Hope NED stays around for a long time......

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  23. Great news!! Stay well my friend!

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  24. Ann I could not be more thrilled for you and your family. Now you can look forward to your son coming home for Thanksgiving and regaling you with stories. . . and more!

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  25. So very, very happy for you!! I've been following your blog for a long time and this is the best post ever! Enjoy every day!

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  26. what a fabulous thing for you and your family. yeah!!!

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  27. Welcome, NED. And welcome Ann, to the joy of living beyond three months out. You so deserve this respite and I know you will enjoy every minute of it, exactly as it is happening. Well done! Carry on.

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  28. Dear Anne, this is the best news ever. You were one of the first people who reached out to me on a BC website when I was first diagnosed with bone mets in Nov 2012. Since then I've been on kadcyla which has worked beautifully up until now. Now I have progression in my liver and lung. I am waiting for my doctor's call about a new plan of attack and I decided to check out your blog for some wisdom and a solid dose of humor. You can imagine my excitement on seeing your wonderful news, knowing all that you have been through. I too would like to see the youngest of my 3 sons graduate high school which won't be until 2018. I will take your column as a timely reminder that you have to have a goal and fight hard to realize your dreams. Thanks for reminding me that it is possible to beat the impossible, even if it's just for a while. Congrats and enjoy your wonderful news!

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  29. This is WONDERFUL NEWS dear Ann! I'm in the stable these days lol!

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  30. All the way from "the real" Denmark: YAY!!!

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  31. WOWZA! WOOT! WOOT! There are no real words to express my excitement upon reading that you are dancing with NED! Yippee, Yappy and Yahooey! YAY!!

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  32. Jesus H. Tapdancing Christ. I am blown away.

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  33. Dance with NED, TED, Fred I don't care just keep dancing!!! Wonderful news.. Hugs from Judi in Reno

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  34. Amazing! Woohoo! Dance away!

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  35. I enjoy all your posts, but this is the first one where I actually caught myself smiling with happiness as I read it. As a fellow Sacramentan (well, of late, EDH, but really, my heart is in Sac), I was drawn to your experience when I was diagnosed at the age of 47. Of course, your experience scared the hell out of me. I was stage 2A. You were Stage 2A. You were metastatic. Was I going to be metastatic as well? Chemo ended a year ago. It's funny how your perspective changes. Yeah, I might be metster some day....but if I am, I will have an attitude much like you. AND...now I will have the knowledge that NED is there and attainable and maybe even long term. Who knows? And, by the way, your son academically kicks ass. I wish that for my daughter, who is only 9, but will someday be graduating from St. Francis or Oakridge or somewhere...and I hope I am here for it. Enjoy the dance....

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  36. I am so thrilled to hear your news! Enjoy.

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  37. Ann, I'm just now seeing this and I'm so, so,, happy for you I'm in tears. Your story gets more incredible with each chapter :) xoxo. Been away from Bloggiing world ever since I went back to full time work but I miss you!!!

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  38. That is fantastic! Enjoy your dance!

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  39. Hello...so happy to have found your site. I just finished herceptin two weeks ago. Will get results of bladder and kidney ultrasound next week. Had stage 2 grade 3 Her2 but no lymph nodes involvement. Large 6cm area and multifocal.

    I am so happy that you are in cancerless. Your attitude is fabulous. Mine has been pretty good so far. I am trying not to be freaked out by every little lump, bump and pain.

    I have a 5 year old daughter with Down's Syndrome. She is my only child and I am going to live to be at least 100 to see her through her life. :-)

    I noticed that someone above mentioned eating your fruits and vegetables. I saw a naturopath two weeks ago. I need to contribute to my overall health. Have you looked into any of this? I have his latest edition on cancer in which he specializes. I am lucky he is here in Victoria.

    OMGoodness, you are amazing and I wish you so much. Lots of love to you from up here in British Columbia.

    Love Sheryl

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  40. This is amazing news and I'm soo happy for you. Big hugs from the UK

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  41. Ann, So glad you are dancing with NED. For now, I am, too. Like you, I deal with side effects and difficulties from past treatments, plus they are keeping me in treatments "just in case." But, NED is beautiful.
    A real cure, one where we could have assurance cancer would not come back, one where treatments could end, would be even better. But, like you, I am thankful for NED. May you have NED long enough to see that college graduation, weddings, more grandbabies.......enjoy!
    Elizabeth J.

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  42. Bravo! Eat! Smile!

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  43. Simply awesome, Ann. Savor this news! F$&@ you, Cancer!

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  44. Oh my gosh, Ann, I am so happy for you. I came to your blog late in the game (about four months ago) and read through every single post. (because of you, I am now working with the Chemo Angels program and have "angeled" two patients so far!) I saw the post about your son's graduation and was ecstatic but somehow missed this one. YOU DID IT!!!!

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