Dreaming in Ten Day Allocations

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A Brief Update from Marcy

Phew…..my 2015 roller coaster ride continues. In early April intensifying pain turned into non-stop vomiting indicating a bowel obstruction. I was admitted to OHSU, a teaching hospital where courageous bedside manner was being tested as I was informed on the severity of my status. One option presented, being “sent home to starve”, sent my support circle and I into an advanced stage of grief. The hospital advised waiting to see if my body could self-heal through fasting and no liquids to aid bowel recovery.  (Please Note: I have since come to understand that being “sent home to starve” is harsh language for a common way to die. As the organs begin to shut down due to cancer, the body no longer wants or needs food and then water leading, in fact, to what can be a very peaceful death.)

You Need Your Bowel - outer pink.

You Need Your Bowel – outer pink.

As my blog reported on April 7th (With Love and Luck) I did recover from this bowel obstruction but I remain at higher risk for more. As has been true for all of 2015, I continue a downward slide. It hurts to walk, so I don’t walk. I feel my cancer despite my opiate patch.

When first diagnosed I was informed that I needed to learn to live in three month increments. I did. I feel like my new mandate is to live with ten-day increments (the time it would take for a bowel obstruction not to self-resolve) and this feels hard. I need to think about every thing that I put in my mouth. Is it low fiber? My farmer husband is aghast that all that he grows and prepares for me as organic and full grain is now condemned.

White bread only!

White bread only!

I continue to find some amusement in the ironies of life.

Palliative care is now an active team member. They are great. They also advise me against hospice since in hospice I can have no chemo treatment and I would die fast. I am still opting for life.

I had a few days in the hospital where I had NO PAIN. I felt stable for the first time in 2015. I work towards that stability and then rebuilding all the strength I have lost.

This optimism is eased by my latest ca 125 showing a startling drop from 173 to 117. For days I refused to open any other messages from OHSU fearing they would retract the numbers.

Who knows….?  My body, my cancer and modern science rules.

Given my current weak status and high need for sleep, I am NOT keeping up with email. If you email me, hold your queries (please!) and instead just give me YOUR update. My blog will do its best to keep you posted.

If you live in the Portland metro area and want to help with daytime transportation or food support, let me know – again most of these helpers will get low contact with me – just talking tires me more than I can afford right now. I am officially dull but eager for your monologues.

Much love, marcy

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38 responses »

  1. Marcy, I am so glad to hear from you. I am so sorry that you are in pain. I am also sorry that you are now resigned to eating low fiber foods. I know how much you enjoy organic, nourishing foods. Your determination and fortitude continue to come through in your e-mails. I continue to send you positive energy, strength, and well wishes as you navigate this time. Know you remain in my thoughts and prayers and I do so send you lots of love. Take care my friend.

  2. Not being able to eat in the ways to which we are accustomed is one of the tortures of this illness. I crave to fill my belly with broccoli and wheat, but there is no room for those things. I never knew how much I could hate ice cream.

  3. Dearest Marcy, here is my monologue to you. I recently posted a link to your incredible blog on my FB page. Within a few minutes I had a reply from an elementary and high school friend who you inspired to start a Human Dignity group in the late 80s. She lived in Portland until returning recently to our home town in northwestern CT. For privacy reasons I shall not write her name here but I imagine you know this beautiful soul. Thank you for finding the energy to write us all. I can only imagine the effort as I recall my mother who had breast cancer, found even chewing a poached egg to be exhausting. Talking was simply draining. Even listening was overwhelming so I shall stop now so as not to take from others who will no doubt want to “speak” to you. Love, prayers, and peace to you, Marcy.

  4. Lots of love, hope you find some forgotten “bad” foods that you can enjoy. For me, sour dough white bread would be appealing… Love to you!
    Tina

  5. While it certainly isn’t desirable, Honey Boo Boo’s family has proven how easy it is to survive (note that I didn’t say “thrive”) on white bread, margarine, ketchup, spaghetti, (the last 3 items are the contents of the family favorite: “basghetti”) and many other processed foods. I know how much you would prefer a meal of high fiber veggies, legumes, and lean poultry or fish, and that may come back to you. In the meantime, relish the wonderful weather we are having, curl up with your pup, and allow Mother Nature to scoop you up and cradle you in her bosom. Sending love, light, and prayers for diminishing pain. Love for you always.

  6. Dearest Marcy — I can tell you what’s new! My 16 year old is sneaking around like mad, trying to get his sex, drugs and rock and roll on while I pretend that I cannot see this. Instead, I talk endlessly about what it means to be accountable in sexual encounters, whether in relationship or on the fly, and the dangers of drug taking for impulsive boys prone to anxiety — and indeed his first encounter with weed was a disaster. My near 8 year old, Ella, is super investigative. Taking her “notebooks” with her everywhere and constantly jotting her observations, writing a searing critique, or designing something. She has a killer fashion sense whose origins are def not on my side. She can move through any thrift store and come out with something that should be in a magazine. Reilly is going to do an internship with a cofounder of Black Lives Matter in LA this summer. I am so excited for him. Time go get his organizer’s head in the game. I LOVE YOU. I am so grateful to be on this journey with you. xoxo Jaime

  7. Let the sunshine and warmth surround you as surely as our love and prayers do. Relish the moment and go for the next. Healing rest and peace to you….

  8. Marcy,

    I am so happy to hear that you are pleased with your palliative care team. I feel certain that they will provide you with a very holistic approach to the challenges that you are currently experiencing. I hope that you can get outside a bit and enjoy the warmth of the sunny days we are currently having…….perhaps just peacefully sitting in your beautiful meditation garden…..and breathing in all the beauty that surrounds you.

    Blessings, Marcy.

    Sarah

  9. Your beautiful smile and riding up on your bike to a gathering was the last time I saw you last year. Your courage and openness with your journey is a gift to us all. Blessings for no pain and feeling all the love that emanates toward you. Barbara

  10. I feel strange updated you on myself, but know my prayers are with you. I got back into Phoenix AZ from Penn Medical last night after a fast long long trip flying to Philly 14 hrs with long stop in Las Vegas. Waited about 2 yrs since surgery for their trial. They will let me know if qualify after results come back. Wish I knew someone in Philly or someone to rent room that has private bath. If I qualify traveling back and forth by plane is tiring butEnough about me, Just lifting you up in prayer.
    God Bless Phyllis. at pstewart@pacstewart.com

  11. Dear Marcy,

    Thank you for your generosity with your time, insights, kindness and wisdom.

    I’m thinking of you and praying for you. You are stronger than most of us.

    Warmly,
    Victoria

  12. Healing energies to you from Ashland…
    Our social justice agency, Lotus Rising Project, is gearing up for the Alternative Prom for LBGTQ youth and adults. We muster on..as well as I in managing my chronic illness. My fibro is at the management stage and I created a FB page for NW chronic illness folks because the activist in me has to do something! Right? 🙂
    May your colon leave you alone and you know how much you are thought of…

  13. Marcy, if you’re reading books, I suggest two, although you may have already read them. Rachel Naomi Remen’s “Kitchen Table Wisdom” and “My Grandfather’s Blessings”. Both are outstanding and very inspiring and comforting. She has lived with Crohn’s disease all her life and has had many surgeries and almost died a couple of times. She’s a doctor who has much compassion and teaches other doctors to care and empathize with their patients.
    Here in Southern California, we are doing all we can to spread the word about ovarian cancer. We just hosted the movie, “NED – The Movie” at a local breast cancer resource center. VERY good documentary about 6 gyn/oncs who form a rock band and use it to inspire them and their patients. We’re also preparing for a big luncheon fundraiser in June. I’ll never turn my back on the cause and the organization I founded, hopefully, will live on for many years to come.
    Please know that I’m thinking of you and sending healing vibes for the cancer to back off and let your bowels do their thing.

    Love,
    Robin

  14. Dear Marcy – In 1984 I spent a month studying Tibetan Buddhism in an isolated monastery outside Kathmandu with Lama Zopa and folks from many countries. I turned 40 there and in celebration my new friends gave me gifts – a small shell from a beach in Thailand, a tie-dyed square of fabric, pictures of deities. And a dandelion wrapped in a note that said, For your birthday, visualize a rose. I keep that in my heart and it popped out reading about your food and other restrictions. So I’m visualizing comfort, joy, laughter, treats and healing dancing everywhere in your life. And I’m lighting another candle with love and gratitude for you in my life, carol

  15. Oh Marcy, I so understand, having had reduced appetite; taste changes; compressed stomach; liver mets and small bowel and colon blockage. Not all at once, but most happened again in 2015. My weight went down as my tumor markers climbed. My palliative care doctor and I had the hospice talk. Harrowing times as I prepared to die.

    Studied cachexia, death from cancer, VSED (voluntarily stopping eating and drinking – see Phyllis Schacter’s video), organic protein drinks (like Orgain) and patient directed dying (as I’m sure there are for me fates worse than death).

    Also, my body studied ways toward nourishment – infrequent meals, low residue foods and my surprise friend – wheatgrass juice (burned out on it during radiation). My friends wanted me to drink smoothies and eat ice cream, but that was horrifying – way too bulky.

    Then, gradually, my last chance medication started to work. The ascites cleared, the pain eased, the weight loss stopped, appetite returned and food tasted good again. CA125 dropped from 894 to 80. I got off steroids. And am experiencing another blessed state of being.

    Marcy, am going on and on, because our situations have been so similar this year.

    I’ve said many times, I’ve a pacifist all-and approach to living cancer. No warrior am I!

    No one knows why I keep ending up alive, but like you, I remain a committed activist. My physical capacities continue to diminish, but my ability to work well with others and get things done increases.

    I am truly grateful.

    And I truly love you, Marcy, and send all good wishes!

    May your circle continue to hold you and all of us support you in a multitude of ways.

    we remain connected,
    Stephanie Sugars
    http://www.mylifeline.org/stephaniesugars

  16. Dear Marcy,
    We are sending you much love and comfort. You are our hero in so many ways (though the “white bread only” status rocks that image slightly…heehee). You are continuously amazing — you teach and share your your wisdom while on this journey, just as you have done throughout your previous, remarkable journeys. We hold you and so many delightful memories in our hearts!
    Margaret and Sharyn

  17. Dearest Marcy I will forever remember working with you as a board member with ROP. I think of you often and have known of your illness for only a few months when I stumbled upon your blog. You enriched my life by coming into it at the beginning of my spiritual journey. I wish you peace and love. I am sorry you have pain. Love, light and Hugs,
    Cindy

  18. Thought of you often during our visit to the Everglades.Was especially surprised at the sawgrass prairie that gives the landscape a wide open, light -filled atmosphere. During the dry season, there is a mat of dried material on the ground that looks sinister, but when the right time comes, becomes a completely different ,helpful organism. I am visualizing that for you. Who knows the mysteries that are all around us in this world and in our own bodies? P.S. Would pastina help? My mother swears I lived on it until I was 6. Love you!

  19. So nice to see your numbers drop, Marcy…

    Had someone stay at Marji’s place to care for the house so there wouldn’t be any break’ins. Thought it would be a win win situation Instead there are 3 dogs, one cat (who pees), besides the 7 or so goats she added who ate many of the tops of trees Marjorie had planted 2 yrs ago.The atty has an eviction notice for me to place on the front door. Hope it works.

    Keep on, keeping on! Bon

  20. Watched a bald eagle perched on a moss covered branch above Scappoose Creek. The sun was shinning down on the water, an occasional splash from the few migrating salmon and we watched, that eagle and I. Not daring to move, I felt the warmth and breeze that connected me to my surroundings. Time seemed frozen and then all to soon the eagle swooped away up the creek.
    Love to you, Suzanne

  21. I think of you every day, dear Marcy. You’ve been such a source of inspiration and strength for teal sisters everywhere. Love and light and comfort to you.

  22. My parents had a similar problem with hospice:. Hospice was the only people who would come to their very remotely located house. My mom needed the help as she had severe health issues and we were worried taking care of him would kill her. Meanwhile he wanted chemo to prolong his life as much as possible, and hospice wouldn’t serve him even though he was terminal either way. It was frustrating for everyone and heartbreaking. Eventually they found chemo wasn’t doing anything Anymore at which point he was able to get help from hospice. But I feel like when hospice gives these ultimatums they’re sometimes unwittingly pushing people to die in order to get needed services.

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