“I hear you are doing GREAT!”

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Recently a friend noted how difficult it was “to know how you are doing.” It’s true, I suppose. I have used the Livingly Dying blog this summer to report on the macro challenges of trying to access the care that I think is best suited for my current situation rather than bore folks with the blow by blow of this summer’s treatment.

In the jumble of the last 4-½ years of living on treatment it is unproductive to rank the various moments. But this summer’s treatment is hard – between the frequency, toxicity, length and travel, I have been living a half life as one full week (plus) goes into treatment and recovery. My exhaustion confuses me. Am I tired, how tired or have I slipped into depression? All of the above may be most likely.

This week I have accomplished tasks as cooler temperatures invited activity. It thrilled me. By Wednesday night I was violently ill – did I do too much, random luck or am I cursed?

I just don’t know how I am.

The other week I ran into an acquaintance as I arrived at the memorial of a friend. She bellowed from across the street, warm smile on her face, “I hear you are doing great!” And I wondered in what possible context she was using such an adjective to describe my reduced life of constant nausea and limitations. Was I supposed to nod in agreement? (I am doing great compared to a chemo patient in Gaza or Syria.) Instead, I declined her bear hug, saying my blood counts required vigorous avoidance of germs that day, my nadir. She asserted that she felt great. “Yeah”, I said, “but it’s not about you.” I felt like the grumpy curmudgeon I am.

This summer I have had minimal social contact – these slight encounters leave me bruised and confused. Alone, I am content.

It has been a summer of loss. I lost the cancer vacation I’d so hoped for after completing the phase one clinical trial cross county. Instead my cancer went nuts. My June to do list, gleefully assembled in May when I was “healthy” for 45 days, was pretty damn vibrant. I was excited! This summer I have lost many trusted comrades as they close out their cancer journeys. Some have been in active choice; other’s reluctant, as they died one by one. I have done more soul searching on when and how I will cease treatment. Not yet but the time inches uncomfortably close. I no longer know my next steps. I now understand that a body can only tolerate so many years living on chemo without breaks. It’s not just about containing my cancer; it’s about keeping the rest of my body functional.

So, how am I as I close out the summer of 2014? Depleted, ever hopeful and ever realistic. Please accept that reality and don’t call me a cancer “thriver” or “survivor” or tell me I am doing “great”! This summer I identify only as a cancer veteran crawling around far too much. And yet very, very glad to be alive.

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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.

41 responses »

  1. Dearest Marcy, It’s nearly impossible to leave a comment. Will it be too cheerful? Too gloomy? Will you read me as hopelessly naive and clueless? It really doesn’t matter. I love that you’re being real (what else could Marcy ever be?) and laying it out there. I just want you to know that I am in your corner because I love who you are and in that corner I want to be real too.

    • I didn’t mean to be off putting, dear Kathy! It may be why my posts are more scarce right now….fear that sharing my reality is off putting. I think a real constructive tip, across the board, is to allow people to self define their reality. And for ill people just little basics like moving from “How. Are. You?” a big query, to how are you today? Bite sized for the many of us, dare I suggest all of us, living on life’s rollercoaster. Xoxo

  2. Thank you for letting us be part of this journey–and know that your honesty is powerful. We know you are not “great,” but we’re grateful that you’re alive and sharing this hard road with us. Sending love and strength and courage as you pick your way along this rock-strewn path.

  3. I hear you, Marcy. I don’t have any words of wisdom. I’m in your corner and keeping my fingers crossed for you. Hopeful is good. I wish for you strength to do whatever you know is right for you.

  4. Dear Marcy, tho we know each other only very distantly, I want you to know how incredibly generous I find your willingness to share this journey through thick and thin, good and bad. That you can find the strength to share and, thereby help us learn from your experience, is an incredible gift you give to us. Thank you from the bottom of my heart. I don’t know if I can help in any way but please know the offer is there. My very best wishes to you.

  5. In response to the immense suffering you’ve been enduring for so long, let me offer a bit of hope in the form of a New Yorker article I just read in the current Sept. 15 issue. Its author, Jerome Groopman, is a Harvard Med School professor. His latest article, The Transformation, is about a new method of fighting cancer that has shown great promise in, among other cancers, metastasized ovarian cancer that isn’t responding to chemo. The new approach is to encourage cancer cells to mature into normal cells instead of proliferating wildly in their immature, cancerous form. Rather than killing cancer cells, this kind of treatment helps them grow properly. Even though the article starts with leukemia, it ends up discussing promising initial trials with ovarian cancer (and lung and pancreatic cancer, too). I hope it gives you hope instead of further exhaustion thinking of more research and more treatments.

  6. Yes, Marcy, I get your message!!! Love you and think of you more than you will ever know. Words are hard to find but they are in my heart and thoughts about you and your loved ones.

    You know what…I love ‘four letter words’ !

    Louise

  7. Hi Marcy, I get that a lot! Especially with the you look great! Really, that’s not how I feel…but they can’t see inside us. For me, I just write it off as the want to say something positive…rather than…”Wow, you look terrible.” It’s tough for everyone. #cancersucks Hang in there! A counselor is helpful…I’ve found.
    BIG hugs!!

  8. It is great. If people over react, it’s their own stuff because this is just clarity. Mike Edera GardenworksOregon.com Beautiful Environmentally Friendly Landscapes and Gardens (503) 720-0014

  9. Thank you for this honest post. And for helping teach “the rest of us”. You are such an example to me of livinglydying. I admire you.
    Love, Kathy

    • I’m so glad you thought to look it up and post the link. My old-fashioned devotion to the print media sure keeps me from thinking I might be able to provide such helpful online information. Thank you!

  10. Thank you for the update – I am feeling honored that the baby and me are on your short list of social dates. Really loved spending time with you. Your gifts as an advisor and friend are cherished.

  11. Hi Marcy! I certainly have not been a good responder in writing to your emails even though I have shared about you with friends of mine that you don’t even know. Words are so hard to find even though they are felt and remembered in my thoughts and heart. When I first met you years ago, I was so impressed and still am impressed. I do think of you often and admire your ability to express you thoughts but none of us are able to ‘walk in your shoes’ in your battle with cancer…even though all of us ‘try’….
    “Tell me and I will forget. Show me, and I may remember. Involve me, and I will understand” but even with that quote…none of us can really know and understand ….. unless we are in your shoes.

  12. I think you are an amazing woman. I love your transparent sharing on such a difficult topic. You inspire ME. I thank you for the updates. I think of you often.

  13. Marcy, you answered the question I wasn’t sure how to ask. It’s a question I imagine you’ve asked yourself often. All the struggle, for years now: has it been worth it? And then you closed with, “And yet, very, very glad to be alive.” You have that fierce, precious “ganas.” Hang on to it as long as feels right and know you are loved. Marion

  14. Marcy, Thanks for sharing your reality. “Great”, even “good”, are such relative terms for us survivors, fighters, crawlers, etc. You and I started our journeys at about the same time but have taken different approaches. I’ve stayed the course with my original cancer center, a large university in Atlanta. Although I have sought second and third opinions along the way and applied for 3 trials but not a candidate for any of them. I’ve been through 3 medical oncologist there, but the one I have now is a keeper. I like and respect him a lot. I’ve followed your journey for treatment, learning along the way and stealing away knowledge should I desire to change my course.
    2014 has been an especially tough year starting with intestinal blockage resulting in bypass surgery on January 2nd. I had no idea of the longer term consequences of that along with continuing chemo. My head has been to some dark places this year. I finally left work in June on disability..had to raise the white flag on that one. My treatment course has been bumped up to be more aggressive. But…I think it may be really helping. The next scan in a few weeks will tell the story.

    You are a fierce fighter, and an inspiration. Continue to be real. For those that do understand and have been there, or are there, your real sentiments validate us. For those that may not have our experiences, I believe they want badly to understand better what we go through.

    Hugs and best wishes to you.

  15. I am so grateful to you for opening your living as you do here. At lifes essence we are all one, connected by deep bonds of love and suffering and hope and common purpose. We are life, which can be so strange – the glorious mystery. I and your friends and those who share here hold you tenderly in our thoughts as we float down the river in our inner tubes, connected and helpless. Such beauty, courage and heroic struggle as we do our life assignments. You shine. Always have! Thank you Marcy.

  16. I too love you, and I love this post more than I can say, especially the last sentence. There is and seemingly always has been something indomitable in you that we don’t all have. You are crawling on the floor; I am shivering under the sheets in an Arctic chemo chill; and the sun is shining without prejudice.

  17. Your message is profound on so many levels Marcy. So many of us “aren’t feeling great” for a zillion different reasons and dread that question when we run into acquaintances. I like to say ‘how wonderful to see you’. Your honesty and brutal truth are a gift to all of us who follow your journey, I feel like you are speaking for my Mom who fought the battle for 15 years back in the 70’s. She was a writer and would have so loved a blog. I know it may sound weird but there are lots of us out here who are holding you up with our gentle hands and sending you as much energy as we can.

  18. Hi, Marcy, I talked to an old organizing friend the other day about community organizing models that we want to know more about. We both agreed that yours at Rural Organizing Project was one of the best-tested and most interesting. Thanks for contributing to the field of changing the world, and thanks for being so funny and fun and bold and straightforward and honest as you do. I want to be like you when I grow up, and I’m already way older!

  19. Thank you for sharing; it’s been two years of chemo and chasing NED…I relate. I am praying for a cure.
    W love and blessings, Dorina

  20. Marcy, thank you once again for sharing your feelings with all of us. I try to understand what you’re going through but it’s difficult. I remember my dad doing what you’re doing back in the 50’s before chemo. He tried everything, as you have, including “experimental” treatments. He survived five years doing that, with some fantastic days, and others wondering why the hell he kept trying. I know he tried for us kids. I know you try to find out more and help others through this horrendous life of living with cancer. You are in our thoughts always. Love you.

  21. Marcy, so very, very glad you are alive! And so very aware of your great efforts to find and fulfill treatments that are right for you. Thank you for making the extra effort to include us in your process.

    As you enter more deeply into cancer life, the gulf between it and “real life” no doubt grows wider

    Your acquaintance sounds ignorant, not ill-meaning. So many people try to cheer us up by cheerleading. I find that I can’t match or borrow their over-exuberant energy. Accepting that we’ve different life experiences helps me build compassion when they can’t.

    Marcy, your honest, reflective sharing, especially of the hard parts helps those of us who live with cancer and other serious life-changing conditions.

    If you have the strength and interest, I hope you will continue sharing your truth, feelings, vision, stories and feelings.

    I will continue to read with an open heart.

    Sending deep, abiding peace and healing!

  22. OH MARCY,
    I SURE UNDERSTAND HOW CRAZY THIS IS, AS I’M TRYING TO FIGURE OUT WHEN MY BY POINT DONE IS. BUT THE WEATHER IS TOO BEAUTIFUL AND FRIENDS TOO DEAR. SORRY YOU ARE SO DAMN SICK! WISH I COULD BE OF SOME COMFORT, JUST KNOW THAT I LOVE, RESPECT YOU AND WISH I COULD CARRY SOME OF YOUR PAIN. AS WE BOTH KNOW THERE IS NO MAGIC WANDS IN THIS REALITY.
    MARJI

  23. I also understand and know what you are going through. I was diagnosed May of 2013 with stage 3C ovarian cancer. It has been rough to say the least. I had no idea what people go through, until I was diagnosed with cancer. Most people are trying to be positive or say nothing at all. And i do understand. Love you and thanks. Julia

  24. Don’t apologize. Terminal illness is not easy. I helped my Mom in her last years and I wish I could go back and do things differently and help her in different ways. People with terminal illness don’t know the “right things to say” and people who help those with terminal illness aren’t sure either what to say. Keep writing. It may seem like the wrong thing to say but whatever you are writing is always right because its honest and true. You talked a bit about the issues of the term “survivor” and when its time to stop the treatments. Not sure if it will help but I wrote a bit about what how I feel we need to give more credit to the people who make that decision. Hope it helps you some but either way… proud of you for being honest and true to yourself.

    http://whenyourparentisdying.com/2014/03/17/finding-the-hero-in-the-dying/

  25. “I am a frayed and nibbled survivor in a fallen world, and I am getting along. I am aging and eaten and have done my share of eating too. I am not washed and beautiful, in control of a shining world in which everything fits, but instead am wandering awed about on a splintered wreck I’ve come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty bats and shines not in its imperfections but overwhelmingly in spite of them…”
    ― Annie Dillard, Pilgrim at Tinker Creek

    I am also very, very glad you are alive.

  26. Yes, it is hard to know the “right” words to say to you. You have been on such a rollercoaster for so long, and without being in close contact anymore it is hard to know at any moment just where you’re at in the cycle of ups and downs and what words fit the moment. But no, your honesty is not off putting. Posts like this that are so personal and real are just what those of us who care about you need to hear. Thanks for sharing.

  27. I think the real learning here is, don’t define people. Telling someone they are doing great, especially without asking, is just plain wrong. Of course, people’s intentions are probably “great”. But let’s evolve and consider impact. IMPACT matters more than intent. “I didn’t intend to shoot you”, only takes you so far. C’mon people – we dont need to know WHAT TO SAY. It’s hard. Saying that is profound. But we can teach ourselves what not to do.

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