After a long silence….

2014-08-23 19.39.18When I began this blog nearly five years ago, it didn’t occur to me that I wouldn’t live to see the other side of my 60s. I come from a family with considerable longevity on both sides.   Only one aunt on my mom’s side did not make to 70—and she missed by only a few months. But despite my genes, it appears increasingly likely that I will join her. Now I am back to blogging, partly as therapy for myself–a way to process what’s happening—and partly to inform  and leave a contribution on what it’s like to live, and die, with a terminal illness.     And, because there is so much misinformation out there about breast cancer, I’ll write about that, too.

In December of 2014, I was diagnosed with a recurrence of the early stage breast cancer I had in late 2010–the cancer that supposedly had a little more than a 10%  chance of returning.   I had no symptoms—the diagnosis came when my oncologist, on a routine 6 month visit and in the face of a normal mammogram, detected what seemed like an enlarged lymph node under my arm on the surgery side.   I felt fine, but I was suddenly plunged back into the world of cancer—ultrasound, biopsy, CT and PET scans, an MRI, numerous blood tests, and a bone scan.

The news was not good—in addition to a couple of lymph nodes under my arm, the cancer had metastasized to my bones and some additional lymph nodes in my chest—but as my oncologist reassured me, it was not an immediate death sentence, either. When metastatic (or Stage IV) breast cancer is confined to the bones and lymph nodes, it is not curable, but can often be treated successfully for a number of years. My burden of disease was low, I felt fine and I was otherwise in excellent condition. I continued to work and to run, including completing four half marathons in the first eight months of my diagnosis. I had few side effects from my first line of therapy, other than some hair thinning.

Because I felt so well, I kept my diagnosis fairly quiet. A few close friends and family knew, but that was it. It helped me lead a more normal life, even though my new normal was coexisting with a terminal illness—kind of like living with a tiger that was tame and sleeping at the moment, but might wake up to pounce at any minute. Although the average life expectancy of a metastatic breast cancer patient is a little more than 2 years,  there is considerable individual variation, and I thought I had a good chance of being one of those people on the long end of the statistical tail.

Sadly, it is increasingly evident that this is not to be.   The first line of treatment  gave me only a little more than 5 months before the cancer started growing again—and the second one even less than that. At the end of last year, scans showed that the cancer had also moved to my liver. A third treatment this winter has similarly failed, and now I’m on to a fourth, all in the space of about 15 months.   By all measures, including sophisticated testing of genomic mutations, the treatments should have worked for longer than they did.    But research dollars for metastatic disease are woefully inadequate, so scientists don’t yet understand why some people respond to certain treatments—sometimes for years– and others don’t.

In the past few months, I have realized that there is a lot I have to say about this whole chain of developments, an unexpected deviation in the road of my seventh decade.  So I have decided to go public.    If you’re up for it–and I realize many may not be– join me on this adventure into the unknown. I’ll write for as long as I can about both living and dying.

25 thoughts on “After a long silence….

  1. Nancy, I am sorry to hear the cancer has returned with such a vengeance. I have enjoyed your posts as you have travelled and have marveled at how well you were doing. I have always admired your accomplishments, your attitude, and your eloquence. I have enjoyed Facebook for that. I will continue to follow your blog.
    An old friend,
    Lynne

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  2. Nancy, you have been a wonderful inspiration, I would like very much to walk with you on this journey…..I came to truly care for your mother and dad and know that they will be there with you, giving you strength and wisdom. I hope that I can only be as brave and strong as you…..Peace my friend….

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  3. I just read this. It’s so brave and eloquent. And, in a general sense, so timely because now that I’m in my mid-60s, friends, classmates and acquaintances are, bluntly, dying more frequently. We might as well stare it in the face. I’m sorry you’re sick again and the treatments aren’t working. Write on. I’m with you.

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  4. Although we’ve not met in person, we’re members of the same indiscriminate yet ‘select’ group of those who’d had early stage cancer which came roaring back some years later (in my case it was over 10 years later) as stage four. It’s a breast cancer reality that has virtually no media spotlight. It’s a very surreal reality to sit in front of an oncologist and hear the stage four diagnosis, especially when feeling so healthy! The pink ribbon folks aren’t telling the WHOLE truth about breast cancer and it’s been quite the eye opener to have to learn on my own that such an incredibly miniscule portion of ALL dollars (7%? I’ve also read just 4%) raised throughout these past thirty or so years have been put towards metastatic (stage 4) cancer research. And it just seems to me that until the research focus is fully on metastatic, they will never find ‘the cure’ for cancer. Preventative measures to avoid cancer guarantee NOTHING. Cancer doesn’t care how healthy you eat, how fit you are, how serene your lifestyle. Surviving early stage is no guarantee that it won’t rear it’s ugly head five, ten or even fifteen (or more) years later. Cancer has been around for thousands of years…long before we screwed up our planet and food sources. And NO ONE is immune.

    So, with that said…I figure all you and I can do is live our lives with our ‘new normal’ as best we can…take joy in the things that might have gone unnoticed back in our cancer free days, and let the stuff that stresses us out fade to the background. Sending all good wishes to you with hopes that your new treatment plan is one that brings you to remission. xo

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  5. When Marty would call for Richard and I answered, I always asked about you. His answers were short and I started to suspect there was something he held back. I am so disappointed that I was right. I will be reading and hanging in there with you. I wish you the best.

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  6. I have never known anyone more wonderful than you. So kind! Ever learning new things. So adventurous. Someone “strong in will, to strive, to seek, to find, and not to yield.” This is so rotten and unfair. It is always a joy to be with you. You make all our lives so much richer. I wish I could say something useful or give you a fraction of the joy you have brought me.

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  7. Hi Nancy, I want to take this opportunity to say I am so sorry to read your news about your health, I am praying for a miracle for you.
    Secondly, I absolutely love your blog. I look forward to following it. Your writing is creative and inspirational. I truly believe you will touch other lives with your words.
    I am including a link to an article about a Dr. Joshua Shiffman. Vinny and I attended a lecture given by him. The attached article does not mention it, but Dr. Shiffman is collaborating with an engineer from Isreal on a better method of cancer treatment application. I tried to find the name of their company, but I couldn’t find it and I am not currently at home. When I return I will ask Vinny for the name. It may be of interest to you.
    Thank you again for your inspiring words, Fran C

    http://www.cbsnews.com/news/elephants-rarely-develop-cancer-could-hint-at-future-breakthroughs/

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  8. Thank you so much for sharing Nancy. Though we met only briefly in Seattle, you inspired me with your zeal and how you lived life to the fullest. What an important reminder for me. I look forward to reading your blog posts. With affection, Carolyn

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  9. Nancy,
    I could begin with a string of explatives!!!! however…
    I have been composing a note in my head since I heard of the latest.
    This afternoon I was in the garden and knew it was time to find you
    I went to find your telephone/cell number with no success. Currently, I have 6 various address books open on the counter and still can not find it.
    I am not sure of your strength level and perhaps you are not taking calls or visitors.
    I need to go East and I could drive up to see you from Boston for a short visit, if you are up to it.

    I go to the LAKE to send you energy and love……Mary

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  10. Nancy, I don’t know what to say except that mentally I try to be with you as often as possible. I wish we were closer in distance. Toshiko and I talk about you often. You are so admirable, and we look up to you in so many ways. Perhaps you are blazing a trail for us here, too.

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  11. The “sleeping tiger” says a lot, Nancy. There really are no words, although you seem to have found a great many. If you ever want to connect, email is pamodell@gmail.com.
    I live every day with the sleeping tiger since my diagnosis in 2005. You will be in my thoughts and heart every day too! (pam Jenkins)

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