Thanksgiving 2014 – MIA

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With chemo the two days prior to Thanksgiving my odds at a festive holiday were weak and then the news came Tuesday morning that my toughest drug, oxaliplatnum, would be increased this round. I cancelled my plans. My ritual is to join a host of friends at an expansive farmhouse on the rim of a gorge allowing views to the desert east and the rains west. It’s a magical place holding decades of shared memories. I would miss 2014.

The funny thing about being missing is that you are in fact gone. The art of holding places seems minimally tested. As I slept all day Thursday and Friday I checked my email on the hour hoping for virtual connections. There were few. Clearly the party was taking full attention. Today I awoke to put on real clothes, my moans and belly holding the minimal clues to inner turmoil. But the steroids kicked in – that crazy zone where nothing at all leaves me spent with emotion.

Today my missing Thanksgiving hits me full force. I can feel the truth of being gone. The party continues. I am gone.

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

59 responses »

  1. Aw, Marcy, if I could I would give you a big long hug and make you a dressing and turkey sandwich, or soup, which might be the better idea. I know none of your friends, but there is NO WAY you weren’t toasted and spoken about at that dinner. Decades of shared time do not disappear when one person stays away. But I totally understand how swallowed up in sadness you must feel right now. Lay low and gather strength. I’m sending you all the positive thoughts I can.

    • I don’t doubt that I was/am remembered with love. But the truth is, I am here. And alone and scared and sick. The well world has a hard time holding us present. That would be a skill to practice, I think. How to keep loved one’s present when they can’t be?

      • Brilliant – that would indeed be a skill to practice. The well world needs to step forward into the mystery, however tentatively, for their sake and ours. I will try to imagine that in a way that can be implemented.

        In the meantime, I want to tell you that you are not alone, but know that scared and sick is all that matters when it has you in thrall. You’ve written, not for the first time, like you’re punching your way out of a bag. Keep punching and find your way back from gone. That’s what you do.

  2. Very sobering and true, Marcy. One of the suckiest aspects of cancer is how isolating it is. I don’t fear death per se, but the feeling of knowing what we will miss, and that people’s missing of us will be real, but finite in some sense, seems hard to bear.

  3. Our thanksgiving was very cool which underlines what you missed. Closness with friends and family feeds us. To not be so fed at this time in your life is not what you or any of us would wish for certainly. But that connection and energy is there always, and it’s very strong. Connect as you are able. You are loved.

  4. Thank you for saying this Marcy. Here in our house on our ranchito Barbara and
    I are talking about how we love you. Here you are dear friend.

  5. I see the blue star and Like next to it and I do not Like it. I think that nothing I say will comfort you – even if I wrote as beautifully as you do. I think of you so often and especially since Marjorie is dealing with cancer also. Please know that you are honored and loved. Bon Hill

  6. It’s a strange thing…being there and not there. Like you, I have missed out on celebrations and activities. I think you just have to live in the moment that you have.

  7. Wow, I’m so sorry for how you’re feeling mentally and physically. You hit the nail on the head here, I’ve realized recently that this feeling bothers me more than I’d like to admit. ((Hugs!))

  8. You are not gone Marcy. You are feeling lonely, yes, but you are not gone. Your friends love you not one bit less and you are in so many prayers continually. I marvel at how a disease that so many share can still make me feel so alone at times. I can be physically present among many but feel sometimes like I am observing through a window.
    Our friends and family worry about us and sometimes get scared. I realized recently, however, that I am grieving for the loss of my future events, milestones, memories that won’t be made. I’m trying to stop my mind from doing this. This phrase is not originally mine, but I’ve adopted it: “I want to die only once”.

    Prayers lifted for you as you continue to fight.

  9. You touch so many and I only wish that you could feel us all touching you back. You are embraced by hugs around the world—literally.

  10. I can relate. Kf was in the hospital thanksgiving morning, and it felt very isolated and forgotten to know everyone was busy cooking and preparing to eat. We were really lucky to be released just in time for dinner, but I can truly sympathize. Much love. Xo.

  11. Dear Marcy. You have elicited so many powerful and potent replies, food for so many meditations. As others have already said so eloquently, know you are loved and admired, yet we are limited to virtual hugs. May the intentions elicit the sense of connection from which they stem. XO Sylvia

  12. Hi Marcy,

    Yes, holidays can be very lonely and more so with what you are going through.
    I admire how you built and sustained community with your blog.

    I’m a multi-time cancer conqueror, cancer coach, speaker and writer. If you would
    like a different perspective, I’m willing to share my website, mind-body medicine, and
    what I work with that mitigates the effects of the drugs and treatments. In fact, in many
    instances, people choose that path instead of the d & t. There is an international groundswell of people/patients demanding healthier approaches to cancer.

    Please let me know if I can help further,
    Adrea Brier

  13. Wow you hit that nail right on the head. I have felt similar feelings going through chemo myself.
    I only met you briefly at Camp and know you are loved so much. I saw how everyone interacted with you and loved you at camp. I enjoy all your posts and keep you in my prayers.

  14. It can also be glorious to be gone. There is a place very deep inside made of pure joy. Sometimes it takes a lot of silence and being gone to find it. But it’s the hardest work of all. All good things and love to you.

  15. Hi Marcy, life here can seem so cruel how it just goes on, when we go, we have to go on to a different place, and the ‘living’ here have to live on here even if there hearts and spirits are broken apart with loss and grief. We don’t get a say, its just the deal. It just rolls on and on. Everyone has their own beliefss, but the only way I can deal is to know this life journey here isn’t ‘it’, and that we find our loved ones again and nothing is lost. I have to believe that, and I do. Sending you admiration and love

    • I have made my peace with dying. It’s rushing that sense of being gone that I am not in favor of. If I can’t live fully, eg attend Thanksgiving, can I not hear your vignettes, be joined in in whatever fragile way barriers allow.

      It may well be glorious to be gone, but I am here. Just absented by sickness. I am not gone yet. Xo

  16. Boy what a lot of emotions raced thru my head after reading your post. It was very sad and thought you were being morbid. Then I felt you might be having a pity party for yourself and last I got a bit defensive of you and figured your friends were not very thoughtful.

    Last month when I arrived home after 4 days in the hospital (critical neutropenia) and my kids could not get off the computer to even answer the door bell and let me in the house, I got ANGRY. What the hell am I getting poisoned for? They don’t need me and I wont be missed. I cried and was broken hearted. I even called ahead to let them know I was on my way. My daughter even answered the phone. But I was not explicit in my communication ” I do not have a key. Please be prepared to open the door and welcome me in with hugs and kisses”

    Kids are wrapped up in their own world. Friends might not be calling or visiting because they know you need rest and do not want to disturb you.

    We have to forgive the kids and speak up to the friends and family about what our needs are. A call from you in the middle of the day when you were alittle energetic might have made you feel a bit better and less lonely. You are a wonderful communicator. They could not read you mind or know what was a good time to chat.

    That’s my 2 cents.
    Regards,
    South FL Debbie

    • Your communication is a present, Debbie, at least to me. It took how many decades to be able to voice my needs more clearly…..and even now, I’m in the learning process. Cancer is said to have so much to do with emotions. I don’t doubt it. Or is it the immune system that is battered by lack of sharing emotions, since we all have cancer.

      One of the greatest gifts I think we can give people who care about us, is to tell them clearly (different from demanding), what we need and want.
      They don’t necessarily know how to help us and often feel awkward or imposing or worse.
      Perhaps there’s a way to couch the request, if it needs couching.
      Or even establish a precedent by asking “how would you like me to communicate how you can help me”.

      Anyway, those are my thoughts on it. One of my friends is writing a book on Non-Violent Communication. Violence is attitude, looks, glances, and goodness, can it even be withholding from those who love us the gift of being able to help?

      If anyone has lessons in how to approach others with sensitive topics or requests, I’m open to it.

      • One challenge of being sick is being able to communicate less. My current chemo cocktail is quite hard, harder than frontline, and I have done a lot of chemo. As I slide into my misery it is distraction, the vignettes of others getting to live a larger life, that pulls me from the pain. I love life and while I get to live less large I depend on the stories of others – good, bad, indifferent to entertain. But when I am sick others “try not to disturb me” – they are being kind when I seek just that 3 sentence email of distraction. I voice this but I think it is a tough concept. I have failed to communicate this gap well over the years.

      • Hi Marcy,

        I think you’ve said it well. You seek 3 sentences of hearing about what is going on in other’s lives. to distract you. People might be cautious about sharing too much joy or too much “x”, so perhaps they’d need guidance there too.

        For myself, if a thought feels bad (and I feel it in my body), I change it. I’m the only one with the knowledge of and power to do that.

        To your joy, health and peace of mind,
        Adrea

  17. Can’t say it any better than your friend, Marjorie: ‘Keep punching and find your way back from gone. That’s what you do.’ Holding you in my thoughts.

  18. We are all going to have to learn to live into the paradoxes, Marcy….you missing where you cannot be, and us not being able to see your face. There will be a time where it is all memory – and I hate that you are in this place today – a foretaste of the inevitable. You know the love and esteem you inspire in others, and we know we are fortunate to receive it, and hopefully return a portion. This day it sucks….and I’m am sorry.

  19. Marcy, being sick and alone and scared is a biggie. But when I’m in that position, I relax and enjoy my space. That’s all we can do. In our aloneness we realize being removed from the ones we love is much more important to us than them. I have lost many friends to the big ‘D’ and they will always be in my thoughts, they just cannot come to the party any more. I’ll be there someday as we all will. And even though we know this and accept this ‘being gone’ it hits us that we just don’t want to leave. Thank you for taking us along on your mission to educate and share the ride. I’ll certainly stay tuned in.

  20. Thanks Marcy it takes courage to openly share and express difficult feelings. Birth and death are not pretty – are they the boundaries of our humanity? Memory – forgetfulness – grief – imagining – calmness – ferment. My son is autistic and very concerned that humanity is destroying the natural world and leading to the extinction of other species. If he were ‘the government’ he would not allow humans to procreate. I don’t know if this has much relevance to you – I feel that your witness – your testimony – your life is a teaching for us. Just getting to know you so I will have to wait and see. Kind thoughts and sorry you had a different holiday that you are used to.

    • Many of my posts attempt to remove all the ways the dying and ill are romanticized with words like “bravery” and “courage” and “inspirational”. I opt to humiliate myself rather than take on superficial labels. I like to show that dying is not all brave especially when you add steroids and such into the mix. xo

      • Hi Marcy,

        You might be interested in searching Angelo Druda. His work is significant in many many ways with regard to the dying process. He is north of Marin yet does lecture in Marin periodically.

        Also, CPMC (California Pacific Medical Center), offers Jin Shin Jyutsu. Many people with cancer episodes are offered that within the system. It is apparently found that they fare better with traditional treatments too, when employing JSJ. If you don’t get there, you can find it on my mind-body medicine page or send me an email and I’ll send it to you. Additionally, I don’t know if you’re familiar with Dr. Kelly Turner’s work, Radical Remissions. She was at Berkeley and my therapist (with the oncologist who fired me for not following his program). She’s wonderful and it’s worth it, in my opinion, to opt into her website.

        I live in the world with the mind set of “we don’t know what we don’t know”, so I share the above with you in case it helps.

        Be well and many blessings,
        Adrea

  21. I can’t begin to or pretend to understand what you are feeling. That was my biggest fear when my mother was dying. Not the fear for me but the fear that somehow I felt on behalf of her — I was terrified of the things she would miss and not see — the complex things like my daughter marrying and the simple things like spring coming again and the flowers poking up through the snow. How could the world continue to spin without her here? Its been nearly three years since she died and I can honestly say that her body may not have her breathing within her but she certainly is not “gone”. I feel her everyday. I think of her every moment. My heart feels compressed with pain as I write this and tears flow again. I see her mannerism in my daughter. I see the results of her good deeds as I move around my community. I see the pain of her absence in her friends and sibling’s faces. She certainly is not gone and neither will you be. The steps you take while physically on this earth will remain as a testament to your existence. I wish I could offer you empathy but cannot. I can offer you a virtual hug though and certainly let you know you have made a difference to me without ever meeting me and you will not be gone.

  22. Brianna and everyone,
    I am willing to share experiences after death/communications from loved ones, if anyone wants to email me. I think that would be very heart filling to share all of our experiences of communications from those who have passed.

    Also, please know that there ARE HEALTHIER APPROACHES TO CONQUERING CANCER!! People live and even thrive without the traditional treatments. Cancer is treated differently in other parts of the world.

    You can learn more from interviews on my website, as well as learn about groups that share
    good information. My site is HealthierApproachesToCancer.com.

    Please know that we are all powerful. There are remissions all the time that are unexplained.
    Cancer and death are not holding hands, they can be on opposite sides of the world.

    Remember too, that FEAR is false evidence appearing real.

    Blessings and peace of mind to all,
    Adrea
    ThrivingHealthAndWellness.com

  23. Dear Marcy, it sounds like you are living with one foot in the world of the well/living and the other in the land of the ill/dying. Betwixt and between. Feeling gone from the well/living, yet immersed in the sickness of chemo and steroids.

    For me this is one of the hardest parts of “lingering” with advanced cancer. I feel like I only make sense to other inhabitants of cancerland. And then not always, because my lingering has been so long.

    These days I’m keeping a really low profile with my well/living world. I join when I can, am absent when I can’t. Contain my suffering. Try to create happy memories for those I expect to survive me.

    It’s an unfolding practice, an aspect of my art of livingly dying.

    Marcy, your name is in my calendar every other Wednesday, because I hope to visit you in Marin. So, you receive ongoing prayers for your well being.

    I treasure you.

    Thank you for sharing your process and yourself with us!

    This is an act of generosity that you needn’t make, but one that so enriches all of us who attempt to live and die wholeheartedly.

    loving light,
    Stephanie Sugars
    http://www.mylifeline.org/stephaniesugars

  24. impressive how many responses are written here. dozens. I’m sure many more remain unsaid and unwritten in cyperspace but written on hearts and minds. May you be blessed to partake of a gathering of friends expressing gratitude soon.

  25. Marcy – your 10/23 column in YES Magazine provided a springboard for my own thoughts about living with dying. Thank you. I don’t blog, but I’m willing to share my 2900 words with you or any of your followers who are interested. Thanks for sharing your journey.

  26. I fear I made too glib a comment re “it is glorious to be gone”. was not speaking of a gone-ness from death, but of being gone, or free, from contact with outer things; delights born of contact with outer things are wombs of pain (Bhagavad Gita). And it is so, so true I have never been in your shoes, tho one year ago my beautiful grandson was put on hospice for cancer we struggled to control, beginning a month of unimaginable heartbreak until his death. You know what you feel and I so repsect that, and honor and believe that, but as you graciously and generously write to us so honestly, freely and beautifully on your journey, it inspires the same. All I was attempting to so poorly offer in the spirit of support was: there is a joy, a paradise, a light within that may be easier to find in the silence beyond parties and outer things. I continue to deeply empathize with all you are feeling and communicating. Thank you from a very deep place for including us, reaching us, being honest with us.

    • Your statement is beautiful and I think applies to everyone at every stage:
      “there is a joy, a paradise, a light within that may be easier to find in the silence beyond parties and outer things”.

      I always feel so sad when I hear of people passing from cancer, or being beaten up by the treatments. As the years pass, more people will know what many have already learned, ie there are other ways to support people and ourselves when dealing with cancer.

      To joy, health and peace of mind,
      Adrea

    • I really appreciate you thinking that through. It was both glib and not. But I did mull it in a positive way of being stretched. Much as I have also thought through my initial post quite a bit – was I over the top in sharing when my steroidal craziness was so out of control. (But my goal is to make being ill not just a romanticized story of bravery and inspiration. But of the full struggle. The sweat, the smalls the doubts.)

      Anyway, I so value us all reflecting with the great heart you model on such tough stuff.

      Was your grandson Amon? What an amazing story of community to watch. What a sadness of life. A test in every way. How is your family coping w.such a loss?

      Anyway, I knew and valued you from my ROP years. And I continue to value you so.

      Bless you for building a better world with every breathe. xoxo

  27. You know it is a terrible feeling that the “party’ goes on with or with out us. I think Christopher Hitchens expressed this very well. Do you think people need some separation from the sick to go on living with a healthy amount of denial?
    Hopefully Marcy you will have given up T.G. to gain other holidays
    Diane

  28. Marcy, from following your posts I know you are looking at a variety of treatment modalities. I am providing a link to a concept that is new to me, Cancer as a Metabolic Disease. In the video the researcher talks about brain cancer, but states several times that his research applies to almost all cancers. If you don’t already know about this, I hope you find it of interest.
    http://www.examiner.com/article/low-carb-ketogenic-diet-beats-chemo-for-most-cancers-says-dr-thomas-seyfried

    Blessings,
    GayLynn

  29. None of us is ever gone Marcy. We may be lost, displaced or in a different time and place but we are always in the hearts of those who love us.

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