Future Options – Ideas Most Welcome

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Stabilize then Rebuild. That has been my mantra since returning from the devastating medical experiences of January/February 2015. Stabilizing meant recovering my abilities to walk steadily, speak clearly, regain strength. All of this was happening with great speed. As was a less heartening challenge in eating, growing pain throughout my belly and each day more hours spent in the bathroom in great discomfort.

The removal of ascites (cancerous fluid) helped last week but not as much as expected. And the fluid started returning immediately. I never was so eager for my doctor’s visit as on Wednesday of this week. She palpitated my belly, looked grim and coordinated for me to go right to a ct scan. It seems my cancer has been partying hard in my belly – expanding in devious ways all of which are still not entirely clear to me but in cancer world – volume matters. It is clear that this is the most cancer I have ever hosted.

And I have no tricks up my sleeve – I have used them all. (There are others out there. They are just not up my sleeve.)

The questions of the week now are: Can I stabilize? Can I rebuild? Exactly what phase have I moved into as my fridge starts filling up with ensure – a protein drink for those too fragile to get what they need through meals?

I had decided this blog post should be light. I have posted a few too many heavy ones of late. But what with reality, what can I do? But here is something that cracked me up yesterday. A fairly credentialed writer and blogger wrote a piece called, What if people treated other cancers like they do breast cancer? I looked forward to a good read on funding unfairness. But instead it was a rant (honest and accurate) on the silly ways breast cancer gets attentions but still totally tone deaf to the invisibility of the other 1999 forms of cancer.

It’s a crazy world — let’s find joy where we can.

I do not know what is next but I hope a plan will allow me to enjoy as much of 2015 as possible. (I’d love to step a toe into 2016….)

Lots of love and appreciation, marcy

 

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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.

36 responses »

  1. Dearest Marcy
    You have no idea how much your words mean to me and to so many of us out “in the universe”…your attitude, humor and honesty astounds and humbles me; we are so blessed to know you and your wisdom even if only through the miracles of the internet.
    Many hugs to you
    Carrie

  2. Your work, and the on-going work of the ROP, has let me know that there is hope and light and justice to be found in rural areas, something I wasn’t all that aware of while growing up in rural SW Virginia a few decades ago. You are in my prayers that you find what you need right now, whatever that looks like.

  3. Dearest Marcy,

    I hope and pray you will step into 2016 and beyond. This was quite a frightening and challenging experience but I believe where there is life there is hope and you are alive. Everyday there is new research and Miracles still do happen. Keep your chin up and your fighting spirit going answers will come to you. You are a dear person so has touched all our lives in a positive way, stay strong we are rooting for you!!!

  4. awwww, Marcy, sending love, I’m sorry it’s such hard going xxxxxxx  http://pmwmusic.com UK +44 7788-164394US  1-917-822-4807Skype: petewyer From: livingly dying To: petewyer@yahoo.com Sent: Friday, March 13, 2015 5:52 PM Subject: [New post] Future Options – Ideas Most Welcome #yiv9694478494 a:hover {color:red;}#yiv9694478494 a {text-decoration:none;color:#0088cc;}#yiv9694478494 a.yiv9694478494primaryactionlink:link, #yiv9694478494 a.yiv9694478494primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv9694478494 a.yiv9694478494primaryactionlink:hover, #yiv9694478494 a.yiv9694478494primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv9694478494 WordPress.com | marcy westerling posted: “Stabilize then Rebuild. That has been my mantra since returning from the devastating medical experiences of January/February 2015. Stabilizing meant recovering my abilities to walk steadily, speak clearly, regain strength. All of this was happening with g” | |

  5. Thinking about all you have accomplished with ROP. Last night I was at a board meeting of The Living Room, the LGBTQ program for Clackamas County. What a difference you have made in the past two decades. It would never have happened without your work. Thank you from all the kids from Butte Creek to Bull Run.

  6. I was great to see you and Mike in Portland. You continue to inspire and teach others from your experience in all facets of life.

  7. Dear Marcy,
    I found you through your Yes! Magazine article and have been following you since. Please know that I hold you in my heart as you trudge through this unbelievably difficult experience. (I am fully aware that words don’t really get it.) Your beautiful energy in the world is such a gift. Thank you for sharing with us. I can understand wanting to see 2016. Let’s just say you will!!!

  8. Marcy, I hope you get relief from your ascites and continue to stabilize and rebuild. Thank you for your posts and for keeping it real. I am sending healing thoughts your way. ~peace

  9. A while back I left a comment about a promising treatment Called 3-BP which has been used in combination with Salinomycin overseas with great results. It is now available in the United States at a clinic called the Dayspring Cancer Clinic. (www.dayspringcancerclinic.com) There might be other clinics in the US as well. There is an active thread about it on cancer compass. If I can help in any way, let me know.

  10. Marcy, consider going on Hospice just temporarily until you regroup and regain your strength. Many people don’t know you can sign up for hospice services and then “revoke” them at any time without losing any of your health benefits. You can go on and off hospice if and when you want to and for as many times as you want to. The value in doing it now is the hospice professionals are experts at getting your discomfort and symptoms under control. For example you may be a candidate for a pleurovac type drainage system that would allow you to drain the fluid that is building up in your abdomen. That could decrease your discomfort significantly and put you in control of when the fluid comes off and without waiting for the an appointment with the doctor.

    You don’t need your physician’s order for hospice to visit you for an informational visit. They will contact your doctor I’d you decide you want to use hospice services for awhile. I wish you all the best.

  11. Marcy, you have helped me and others. Our lives are changed by you, many lives are changed by you. I agree with beadingnurse, please have a visit with the hospice folks. You have taught me so much, and you will continue to teach me. You please rest. Love, Adele

  12. Oh, dear Marcy!

    I have such love for your persistent spirit.

    Marcy, I’m awed by your ability to stay the course and to look for ways to stabilize and rebuild, even while facing your biggest cancer challenge with no more tricks up your sleeve.

    Yet, I suspect you still have more resources, inner and outer healing allies, to meet what’s happening now.

    Marcy, I do hope you’ll access palliative care and/or hospice care to get you through. Using them doesn’t mean giving up or giving in, but rather finding ever better ways to survive, thrive and express you.

    It’s time to call in all forms of healing that resonate with YOU! Precious you!

    love always,
    Stephanie
    http://www.mylifeline.org/stephaniesugars

  13. Hi Marcy, I agree with all the hospice comments – they are super helpful and can alleviate a lot of hassles – and you can come and go. They were great with my mom – it prevented extra hospital visits when doing things at home worked better. I”m thinking of you and want to echo other’s comments – every time I’m on a board call or get an email from ROP staff – I’m aware of your powerful work and how much it has impacted communities and people – in and beyond Oregon. Much love, gratitude and solidarity.

  14. Darn! Marcy, I’m sad to hear of your struggles and ever so grateful that you are sharing honestly. All your information is SO HELPFUL….and trustworthy. I join your wide circle of well-wishers and add to the intentions of healing and all the support you need to maintain equilibrium, a sense of peace and infusion of helpful information. Also, I thank Peter…..I’m on my way to Amazon….. Warm hugs to you and your loved ones, Sylvia

  15. Marcy, I’m not sure what all treatments and trials you have tried and I’m sure you are very informed as to what is out there right now for ovarian cancer. I join others in urging you to enter hospice or palliative care just to give yourself a break until you can get another plan together. It sounds like you need professional help recovering after these last difficult months. Also, have you considered using any alternative or complementary treatments? I’m not a big proponent but I’ve always thought that if I were out of options, I would be open to that. I’m sure you already have this, but just in case, here is a listing of clinical trials. http://tinyurl.com/nl8eop3

    I’ll be keeping you in my thoughts. Sending you love and hugs.
    Robin

  16. Marcy, sister, most generous soul ~ re “Ideas most welcome” – some thoughts: ascites drain as mentioned. Friends with ascites found to have low albumin levels felt much better after receiving albumin infusions.

    My ND has had oncology patients who benefitted from nourishing broth (made with organic chicken/beef/or fish bones or vegetables). Even if only able to swish in their mouth the membranes absorb broth’s goodness. Is it possible to replace Ensure (sugar and oils) with nutrient-filled, mineral- and vitamin-dense bone broth made with love by friends or family members?

    In my thoughts daily.

  17. Dear Marcy,

    I’m sorry to hear of all the difficulties that you are currently experiencing. I totally agree with others that have posted about hospice and palliative care. Hospice is no longer….as in the older days…. what people choose when they have given up……plus the research shows that people that choose hospice earlier in their disease actually live longer. Additionally, as I’m sure you know, palliative care is very different from hospice and also has been very successful in relieving pain and emotional discomfort. OHSU has a very good palliative care program….if you are not in a palliative care program, I would strongly encourage you to look into one.

    I also agree with Peter’s recommendation of Joan Halifax’s book ….Being with Dying. Joan is a wonderful Zen Buddhist Teacher….who has worked closely with people who have faced death for over 30 some years…..she has much to share with us and teach all of us.

    Ultimately, you are the only one who knows…. deep in your soul….which path to take next. You are in my thoughts daily, Marcy.

    Love and peace.

    Sarah

  18. I’m so sorry that you’ve been having to endure so much suffering, Marcy. And yet despite it all, you still managed to come to Peace House for the fundraising event for your archives. Thank you! I was so glad to be able to speak with you and Mike, however briefly. You must have been utterly exhausted when you finally got home.

    I sure hope you and your medical helpers take advantage of every possible way to ease your suffering. Don’t know whether to call that palliative care or hospice care. I just call it eliminating as much pain and suffering as possible with as little energy-draining hassle as possible. Someone here mentioned a tube that lets you manage your own draining of excessive abdominal fluids without going in to have a doc do it. Sure sounds like a good way to help improve your life to me, if it’s possible.

    Thanks for all your honesty about what you’re going through. I just hope there are a lot of things available to make you feel better, even though you don’t have more potential curing treatments up your sleeve right now.

    Much love to you, dear woman. You’ve given so much of yourself to heal the world; wish we could give as much healing back to you.

    Lee Ann

    • With an aching heart appreciating the radiant edge of your truth. Heart goes out to you,dear marcy, as you navigate the murky, rough & ever-changing waters between impermanent body & fierce life-loving spirit. Mind wishes there was a Pi-like scientific solution. Based on experience with a friend who had same oncologist, & of course Bev, I second the emotions of those who advocate for hospice & palliative care combo. Depends on what gives meaning to your days & how you define & rate quality of life for yourself. Seems like it’s different for everyone. Sending meditations for wisdom, healing, comfort, ease, & freedom from suffering to you & family. In lovingkindness, Roz

  19. Hi Marcy. Just a thought about ensure. I believe it’s a high protein, casein based drink. It reminded me of what I read in “The China Study” about an experiment that was done on rats with cancer, being fed a high protein diet, casein based…100% died. The book presents the argument that high protein feeds cancer and many other modern day ailments. I would agree with those who are suggesting gentle, alternative, liquid broths for soothing your poor belly. Wishing you comfort, with love,

  20. I’m so sorry to hear that after all that suffering that the HEATT trial didn’t help you. Sounds like it wasn’t effective. I’m glad to hear that you’re improving.

  21. Dear Marcy, Just to affirm with the others the generosity of your spirit to offer this blog. I remember you stating that you do this to disseminate information and to form community. You have been exceedingly successful. I very much appreciate your offerings and following your path and considering the suggestions of your community are so VERY HELPFUL to myself as well. Thanks to you all. Sending you wishes for clarity and bountiful support. Sylvia

  22. You made me laugh with your 2016 toe dip wish – keep on with those zingers! They are what keeps us full of hope. Love you, Bon

  23. Marcy –

    We don’t know each other well, but here goes my $.02 worth, unadjusted for inflation. There may come a time when instead of livingly dying, you find yourself dyingly living. Whether this is that time or not – who knows? Your last few posts sort of perked my pastoral ears up as you sounded closer to that line than I’ve heard you before.

    I agree with the hospice/palliative care comments – and pray those things will work favorably for you – they are such a resource for negotiating these days.

    I’m late to the discussion and also just read about your call with Roger. I agree, there is always hope and it is good to know this is not an uncommon response to the HEATT treatment. Will keep you in prayers and kindness and light as you begin chemo again, look at palliative care, and walk the steps in front of you. And feel honored to be among others much closer to you along the way. Thank you for that gift.

    Joni

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