About (but not about) me

I’m a poet. I am a writer. I am a woman with metastatic breast cancer. Like me prior to March of 2015: Incurable and alive. My life prior to diagnosis at stage IV consisted of the wobbly first steps of my life’s spiritual journey. I do not believe cancer is a “gift” or a “war.” It is not a choice I made nor a karmic wheel that rolled over me. Cancer isn’t a punishment and when MBC people die they don’t fail, the medical community failed us. Only 6-7% of all research dollars for breast cancer are allocated to metastatic breast cancer and #stage4needsmore – 1:8 women get a breast cancer diagnosis and 40% of us will become metastatic- that is the cancer has gone beyond the breast.

Six years ago, breast cancer with metastasis to the bone initially, became the first steps in a the long and most difficult of my life’s journey.  My education stressed communications and probably defines one of my strongest attributes. My ability to digest and incorporate hordes of information has helped me to both navigate the incredibly difficult terrain I found myself on and arrive at the help I needed using the quickest route possible. Not only medical but includes financial, professional, and personal.

Ask me any question you want about my experience related to MBC and I am happy to share, even very intimate information if it can help someone else. My feeling in this matter: it’s incumbent upon me to share of myself because no one else understands quite like others afflicted with similar diagnosis. Also, our support circles now need to expand to include fast new friends, including virtual friends through online support groups. These people have become integral to finding inner peace and integrating them into my world, I would argue, helps improve our quality of life.   

25 years of marketing and communications in the high tech industry allowed me to quickly develop required skills to which I’d not even been exposed prior to landing my first gig as a public relations manager.  The very nature of what my industry set out to do, simply stated, was to change the speed at which the world communicated. That necessitated the use of newly invented tools.  Tools that would vividly engage customers in real time discussions rather than just yell it at them way back when in the age of commercial advertising. We had the awesome job of convincing businesses they could trust us to successfully lead them into the future. Hence, the unlikely career of an English major began in telecommunications.  Ha!    

Now in the most odd position again, I’m in the peak of my Midlife and instead of the executive’s washroom key handed to me, I got a fast port for chemo and other substances to be easily injected into my body – it was installed under my skin just over the offending tit that’s got the tumors. Stupid tit.   

So what’s life like these days? Lonely, isolated, boring at times, funny, abstinent for periods of time I still cannot even fathom, constipated, painful, sweaty, but HAPPY TO BE ALIVE EVERY DAY. And I’m a patient advocate for LBBC.com – living beyond breast cancer, a contributor to other blogs and books on the topic, and share the love of a wide virtual support network of friends worldwide. What a surprising benefit that’s become.

Yet simply living is a full time job. I spend at least 10 business days a month dedicated to doctors visits, tests, chemo, drug therapy, research, and patient advocacy.   An equivalent number of days spent recovering emotionally and physically from the aforementioned.  My husband and I spend a lot of time in the same room trying desperately to reinvent our relationship to get as much guilt out of the house and as much joy into the house as possible. It’s harder than you might think.  

Work on  http://cancerbus.com as much as possible and I also write poetry and read and absorb as much media as possible on cancer and related topics so I can regurgitate in some informed manner and help those who aren’t strong enough to speak or are too tired to absorb the information required to be as good of a self advocate as we need to be with MBC.    

I live in the Sierra foothills of Northern California with my husband and partner of nearly 14 years and my cat son, Simon. I’m also a stepmom to two handsome boys 22 and 19 who I love all very much. I tell my boys in all but blood they are my own, although I don’t recommend step parenting to the faint of heart- it’s a tough role to be in any family situation, mine included. Their own mother doesn’t believe I have MBC, but you know what I probably think of that.

8 thoughts on “About (but not about) me

  1. I’ve been there, and I agree with you. Cancer is a fucker. I’m a 20 year ‘survivor’ and hate that word in this context. I hope your health continues to improve in every way. Glad to connect,
    eden

  2. I think I want to:
    Let me rest.
    Do my best.
    Get out from under.
    Stop the thunder.
    “Roll with punches.”
    Skip mental lunches.
    Forget my blunder,
    Trust my hunches.

    Bounce back.
    Have a knack
    For easing slack
    That runs off track.
    Try to stack
    My mental rack
    So to contract
    My rubber crack.

    1. Jan,
      I love your poetry – it’s real. It’s understandable without having to circumnavigate a dictionary of olde English. It’s universally applicable. But much more it’s brave. When poetry is stripped to its barest essential elements – the emotions, the feelings raw…you are risking putting yourself out there and that’s far more important than hiding yourself away in a cave filled with the echoes of too much effluvium so none can feel the pain you feel, the joy, or the energy. Thank you for writing this and sharing it here. I hope to see more to read very soon!! I feel honored you chose to post it on my blog and feel free any time. If you want to write a guest post to publish here please let me know and I’d be thrilled to post it. Just let me know. Any time is great.

    1. I agree! There’s a recursiveness to curative powers of writing. I write to heal, the act writing and the act of sharing to gain insight and perhaps provide some, too. “Et maintenant voici mon secret, un secret très simple: ce n’est qu’avec le cœur que l’on peut voir correctement; ce qui est essentiel est invisible pour les yeux.”
      Saint-Exupery
      Here, for what it’s worth, a short, internally combusted poem inspired by your comment…

      The Little Prince
      Fiction as a hobby, such a sweet waste of hours
      Yet I’m minute poor these days to pay even a poets dowery.
      When feeling existentially incomplete.
      Some may say, “you’re depressed!”
      Down where the saddest of enemies scars
      Pointing weaponry dead centered on target souls.
      For I hold (hopeless) hope like a balloon in a child’s fist
      Tightly gripping at the string until the
      Helium leaves a wilted flower in my wilted wrist.
      The differences between disease of body and of mind are
      Merely words, semantic games, and the doctors who define
      The nature of the sickness and the cause of our infirmities
      May be a chill leading to hypothermia
      Of ones essence or their extremities.
      So the little fox chases me until the moon
      Becomes the rise in me and the ascension of the fool.

  3. “Hang tough, I’m here for you! ” is what i always said to my wife during her StgII H2Nu treatments…

    It’s been one year, 3 months and 17 DAZE since Her last treatment. 2-6mos checkups down 22 more to meet!

    IT will never be the same…. CrAzY good times

    1. Life changes daily even without cancer, and you take care of yourself, too. It’s not selfish but in fact necessary for all caregivers not to lose their minds. I’m just a few lines in the ether away from lending an ear or a to assist in finding resources. This is not a lame half hearted offer, but a real one. Thank you for your comment and I hope you’ll follow along, too.

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