Transition to Hospice Update #1

Standard

Hospice is “designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure.” Actual rules require that several doctors agree that the patient is in the final six months of life before they can enter hospice care. That is a very subjective agreement for doctors to reach although not in my case.

Six months is a long (and potentially) wonderful time.

This first week of transition has felt quite zoo-like or a bad, too long Saturday Night Live skit – not the oasis of calm I was seeking.

My house as a zoo.

My house as a zoo.

Why? I came home with an NG Tube connecting my stomach with external equipment that pumps anything that enters my stomach out. I can stop the pump to allow pills to enter the blood stream but the basic idea is that I need an exit plan for my stomach and my cancer has blocked that off. This requires that I am tethered much of the time to equipment. And the consequences of things not working are

  1. gross (stomach fluids on my lap) and b. it can make me feel yucky fast.

    It looks so innocent

    It looks so innocent

Of course, things went awry from day one and diagnosing the actual problem required an array of people, being paid by an array of sources – e.g. problem solving within health care bureaucracy. Yes, a very bad week. Since I couldn’t diagnose the problem, I defaulted to blaming everyone. In (almost) retrospect there are probably more praises to be sung.

Hospice problem solves. They may need pushing, they may need patient clarity, they may need time but they seem to persevere. Yesterday, they finally got OSHU, the discharging hospital, to release the equipment that only they could provide. Yesterday they brought in a man with 40 years experience with NG tubes to visit, explain the situation then get to work.

I am now informed, calm, and have a really new frame for understanding the revised role of the NG tube now that I am in hospice. And it includes eating and minimal reliance on the pump, a step towards normality. And my oasis of calm…?  search

Warmly, 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.

43 responses »

  1. I love you Marcy, and I miss you terribly. No magic bullets are there for me. It is scarier without you here, but I know we will dance.

    • So glad to hear that the Hospice folks got things together. I have had extensiven experience with them in several different places and found them invaluable. So happy to hear you can eat again! Blessings.

  2. So glad you’ve found that oasis – even if it is only a stock photo! I hope the next week is much less zoo-like for you all. 😀

  3. ah Marcy, even now you make me chuckle. We all know how important being honestly informed is to you. Glad to hear your hospice team has discovered same and taken action. Now for the calm…and even perhaps Bon Appetit! with much love

  4. Thanks be to the NG maven for bringing you some comfort and a little near-normality! And hopefully the kinks will have been worked out with the coordination of the rest of the services by now. So sorry it’s been such a difficult time, Marcy, when the chaos, discomfort and frustration of the hospital setting has been transferred to your own home and there’s nowhere to run/nowhere to hide. Hope things start smoothing out.
    Peace and love,
    marie

  5. I have been thinking of the first time we really sat down together, at that burrito joint in Scappoose. And how delighted I was to begin to know my fierce, funny new friend. I am so happy to see both qualities in evidence today. Sending so much love to you and Mike and your team. Karynn

  6. Marcy, you continue to be amazing even in the midst of so much tribulation. Your honesty is as remarkable as your pluck. You have long refused “to go gentle into that good night” (Dylan Thomas) and have raged. Bless you for that, and now bless you with love and peace. Marion

    Sent from my iPhone

    >

  7. blessings . I hope you are feeling comfortable and getting the right visitors at the right times, and rest when you need it and joy and love .

  8. I keep thinking of your smile, Ms. Marcy.It will always be with me. But also your fierceness. How fierce you are still surprises me. I will always have you to thank for showing me how to fight strong. Love you always.

  9. Thank you for taking the time and energy to write this Marcy. I think of you often, send you love and ask Nuestra Señora to provide you comfort daily.

  10. Marcy, Marcy, Marcy,
    The words that I most want to share are in my heart but not so easy to write. You have always been a ‘trooper’ in all of your endeavors. Saying ‘goodbye’ is not easy for any of us. I am using a quote that I love
    “WE ARE, EACH OF US ANGELS WITH ONLY ONE WING, AND WE CAN ONLY FLY BY EMBRACING ONE ANOTHER. (LUCIANO DI CRESCENZO)

  11. You remain in my prayers that all will be peaceful for you from here on. I’m an OvCa Sister in Huntsville, Ala. who has followed your blog and posts on Inspire. We all (the Inspire ladies) appreciate you so much. Blessings. Know that you’ve done well.

  12. Cosmic! I was thinking such warm thoughts about you and blng! There you were on Facebook. And true to form even now: logical, thoughtful, a little big snarky and all Marcy! Love to you my dear friend. xxx

  13. Wow even as you face the dreaded Hospice WORD you are still there to tell us. My Dad was in hospice and it was a very peaceful time for all of us as he went on to meet Jesus. He told me he would say hello to Jesus for me and closed his eyes. Thought of you a lot when I was laying in Apheresis unit at Penn Medical harvesting portions of white cells.
    Kind people while I was there. Person very kind sent me email after she saw me reply to you about where I am staying in Philadelphia which I haven’t quite figured out. You have done a lot to help us all figure all this out. It is a complicated process to go to an unknown city for treatment. Where does one stay I’m unsure because cancer in itself is expensive disease. Traveling and eating out, etc. cost extra especially when my husband stays home to take care of our little baby. She doesn’t do well with strangers she barks at them, at TV, other dogs, when I am not there.
    When at Perelmann the restuarant attached lunch was $ 17. Only place I could go since I was at Perelmann getting a tube placed in my jugular vein in neck before Apheresis no time since they ran behind almost 2 hrs.
    Marcy you are loved by many may God comfort you with his peace.
    Phyllis
    pstewart@pacstewart.com

    • i am from phila now the bronx people are cheapthere and here speak up ask for lower priced
      options i am being treated at memorial for sarcoma food is included ask for a social worker
      speak up up up

      marcy take nourishment think of hitchins what would christoher do, you sound like
      yourself

      ty

      trea trtrt

  14. Dear Marcy–Oh, so glad to hear from you again: I thought the last one you wrote, you said, would be your last writing, so happy happy happy to hear from you again! God Richly Bless!–bonnyG

  15. Thanks for the update, I cannot imagine how hard it must be NG tube and all. I hope that the system can get it all right for you, and you are comfy cozy comfortable. I hope it is of some comfort to know how many people out there love you. Janet

  16. Oh Marcy, as a relatively new hospice nurse ( although I have done it before) and also having my mother on the service – I can totally relate to what you are saying. There are new people, who have to now get to know you and your specific condition, likes, dislkes and issues, and there often appear to be communication issues as we try to meet you in the place that works best for you – which sometimes takes time, which often we don’t have…… But I am glad that there seems to be some progress towards your well being and comfort. I am glad you get to taste some flavors, and hopefully you will get your symptoms under control so you can focus on living at the moment……. and being with those you love and doing small things that you may love to do if you have the energy. You are an inspiration. A giant loving HUG to you……….. and to Mike too.

  17. Marcy
    I was on an NG tube for about 4 weeks a few years ago and tho it was helpful for medical reasons, it’s not a pleasant experience. I hope it gives you some relief. Coming home after such an extended hospital stay felt lovely tho pointed out so many problems — I couldn’t reach this like I could before I left, I couldn’t sleep the way I used to so I needed a dozen new pillows to prop up. I had dietary needs that were so different it took a whole cadre of friends to shop different places to ensure the new NG me I had what I needed

    We stand (and in my case sit) at the ready to equip and transition your zoo.

    Mich love. CZ

  18. Marji was told she had 4 months but she gave us 11 months. I hope the best for you and hope you will be writing more. You are an amazing wordsmith so please continue…Love, Bon

  19. Dear Marcy,

    May your growing inner calm ripple to your surroundings and those around you.

    May you feel their loving support embrace you as you step into this next phase.

    May your engagement and wonder serve you well.

    And may you en-joy this period – whatever its length.

    Sending deep love & warm regards,
    Stephanie

  20. Holding you in my thoughts and sending best wishes for the calmness you seek, as I contend with the challenges of feeding my husband through a PEG tube (directly into the stomach) as he has recently had surgery for mouth cancer and will be starting radiation soon. I have never associated happiness with tubes, pumps and liquid food formulas, so I’m experimenting with the idea. I hope that hospice becomes the shelter and rest for you that the name implies.
    Love,
    Chris

  21. Marcy – I hope you have many peaceful, free from pain, joyful 10 day periods. I can only hope that when I face this decision in the future, that I do so with the grace, courage and humor you have displayed. All blessings to you and your family.

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