The River Appears*

It has been a difficult couple of weeks and I am behind in my writing.  Just after Christmas, I learned that the sixth treatment I’ve had in two years has not been working at all. My oncologist and I had a serious talk. “There are more treatments we have, mostly chemotherapy,” but he also warned me that with each one the likelihood of efficacy goes down – sometimes to as low as 5 or 10%–often with harsher side effects. The palliative care nurse was there as well and we discussed hospice. We agreed I would come back in a week after I had absorbed this, and would discuss next steps. He did not give me a prognosis in terms of time, but we agreed it is likely a few months.

By late the next week, I had developed a serious cough that by Saturday had me wheezing and spitting up blood. On Monday morning, the doctor took one look at me and my blood work, and wanted to admit me to stabilize this — if he could — as well as I give me blood transfusions (it turned out three altogether.)  So after a temporary stay in the clinical trials area, hooked up to oxygen, I was trundled off to the main hospital and admitted. To be honest, the doctor was not sure if I would even survive. His goal was to get me to the point where, with oxygen, blood,  and medication, I could go home and be met by hospice.

Within a day the wheezing had abated,  and my breathing had returned to almost normal with the oxygen machine, and I was discharged. They sent me home in the world’s most uncomfortable ambulance, but I was glad that Marty did not have to make the return trip to Boston and manage the oxygen tank, etc. The hospital wanted to be sure that oxygen was set up int he house before they would let me go, so it was early evening by the time I reached home.  I could barely walk.

 

Since then, I have had a parade of hospice workers in and out, including a nurse, a case manager, a home aid, and a social worker. Harry is here and along with Marty they are able to attend to most of my needs, so I will not need to draw on the hospice services for a while yet, other than for medication. It annoys me that I cannot be left alone, but that is for my safety, I guess.

 

So the last leg of my journey is underway.  Emotionally it is a bit tough to be in this place, but I’m also relieved by the fact that we won’t have to schedule our lives around trips to Boston, CT scans, and all the rest.

 

I have seen others share this news and get a variety of responses. It is not dissimilar to Elizabeth Kubler Ross’s four stages of grief: denial, anger, bargaining and finally acceptance. I think the person who must make their decision may often be  further along in that continuum than others who are hearing it for the first time.
river
For me, it is like trails on a path that eventually come to a river, and walking alongside the river for a while. Eventually you see a boat moored onto a small dock, and once you decide to get in the boat, you move away from the shore and begin to float down the river out to sea. You hope that it is a smooth ride, without any rapids or scary or painful spots, or places to get you tangled in the branches, or stuck on the rocks. In the early stages, it is too far and the river too winding to see the ocean at the end of the river, but I know it is coming. One thing is certain: the shore, with its pathways and treatments and byways is no longer really in my line of sight.

 

I use this analogy because the people standing on the shore often have a different perspective. Although they may say nothing to my face,some are not certain I got in the boat at the right time. “There is another boat later down the river — couldn’t you keep walking / getting treatments until you get to that boat?”   Some see another path on the shore I didn’t try; push for a second  (or in my case third) opinion, a trip to Germany for a special hyper-metabolic tank treatment that worked for a friend, Gerson dietary therapy — you name it. Others wail, “don’t give up, no doctor can predict the length of your life, keep having hope, the next thing might work.” Or that prayer, faith, or an angel in gossamer wings may manifest a miracle at some midnight hour — “radical remission”.  Some have some personal or family experience to fall back on, where perseverance, as they see it, faith, or something else made an individual difference, and desperately hope to transfer that to my situation.  Some simply cannot accept that this time, there  may be no fix, no suggestion, no other potential to  be tried that will change the natural flow of this river to the sea.  What I do know is that, as  I sit in my boat and drift with the current,  the words “don’t give up,” are not unlike hoping for the boat to capsize and for me to somehow find the strength to swim back to shore.  I would feel cold, wet, even more tired than I am, and stuck.

 

And then, there are others, standing silently in witness, holding space for me while walking along the shore as they keep me in sight, simply being present, offering prayer and peace.  It is recognizing the aloneness of the person in the boat in the river, without feeling the need to call them back to one’s own place of comfort — where there is solid ground, pathways, treatments, “battling” a disease, and what we consider normal in the medical environment. It is total acceptance of who the person is and what they have decided — whether it is a decision you would have made at that time for yourself or not. Some send cards of caring or calls, some bring chocolates – or fig newtons–offering comfort, peace, memories,  and even laughter. For even those facing death still like to laugh once in a while.  And perhaps, most important, It is recognizing that “despair” is not the opposite of “hope”.  Sometimes, it’s  acceptance.

 

There is a Jewish prayer called the mi’sheberach, often translated as “the one who blesses”. The prayer is recited whenever the Torah is read and names people by names. In English, the translation calls for a “healing of body and spirit”. In Hebrew, however, the words are a bit ambiguous — a “refuah sh’lemah“,  a healing of completeness. When we understand that the body and the spirit are intrinsically connected, it makes sense that it is impossible to know whether “a complete healing” means a recovery of bodily and/or spiritual health, or the unity of body and spirit in a new state. For those who stand by the shore in witness, watching a person’s journey to his or her life’s ending, the latter meaning may provide as much comfort to the prayer as to the intendee.

 

*with thanks to Harry for scribing this from my handwriting as I have developed neuropathy in some of my left fingers.

13 thoughts on “The River Appears*

  1. Nancy, I wrote a comment but I’m not sure that it posted. Thank you for the wisdom that only one who has LIVED can offer. Know that I hold space for you during this, life’s last and greatest journey.

    I wanted you to have this link, to a program dear to my heart and one that I’ve trained in: http://www.dyingconsciously.org

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  2. I see my comment posted as “walkinginceremony.” That’s my old website. This is Ed Liebfried. Sending love and light your way.

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    • I feel so blessed to have entered into your life, and you in mine, even though it has been for so short a time, Your compassion and wisdom, reflected within our scholarly doctoral community was always with the warmth and humor of your heart. While it saddens me deeply that you are at this crossroads, know that as you guide yourself, you guide us all through a passage we all shall meet, yet remains the most unknowable of life’s moments. You shed light upon the waters we all will cross someday and for that I am so humbled and deeply grateful. I love you, Nancy. My prayers are beside you as is my love, Maxinne

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  3. thank you, Nancy (and Harry) I will keep this and other missives from you close when I begin my journey. I can only hope that I am as brave and wise as you. I’ll be chanting and holding you close. Much love and precious memories! Pam

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  4. Thank you for being so brave and sharing your story. You have had an extremely interesting and blessed life…I frequented your family store as a child and young adult with my mother, Norma Boddy. Hugs to you..

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  5. Nancy – I pray for your continued comfort and I thank you for so eloquently and honestly sharing your journey. I can’t tell you that my heart isn’t filled with sadness but because of your strength it is also filled with hope. Only our Creator knows the hour so continue to place your Faith in him. I’m continuing to pray for your comfort and that all of your days are filled with hope, peace and LOVE 🙏🏾🙏🏾

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  6. Nancy- Your thoughts were so beautifully written. Since I have worked with the terminally ill in the past and personally met Elisabeth Kubler Ross, I agree with you that no one can make this journey for you and that the decisions are yours and yours alone. I know that even though this is very hard on you and those that love you so much, I feel that you will be ok because you seem to have reached the acceptance stage. Unfortunately, not everyone gets there. So happy to hear that Harry is there for you and Marty. I will continue to pray that your journey will be as pain-free as possible and that you have the peace of the Lord with you. God bless you, Nancy.

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    • By saying that you will be ok, I mean that you are ok with your decision and know that it is the right one for you. I do not mean that you will be ok because even though you know your decision is right for you, doesn’t make it any easier to accept. This must be extremely difficult for you and those that love you, and I will continue to keep all of you in my thoughts and prayers.

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  7. Nancy, my long time friend. So many memories of when we were younger. Know you are in my thoughts and prayers. May the love of friendship, Give you Comfort. May the Love of God, Give you Peace. ❤️🙏🏻🙏🏻❤️

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  8. This was very eloquent, Nancy. I hope your journey with hospice will be one of peace and comfort, and don’t let anyone tell you it’s “giving up.” When I worked for Hospice of Michigan, our medical director said in his experience patients lived as long, if not longer, on hospice, compared to those continuing curative treatments, because their bodies weren’t being assaulted, they weren’t in pain, and they were receiving great support. I’m sorry that being so far away I can do little more than send positive thoughts your way.

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  9. Such wisdom and truth here, embedded in a powerful image. A privilege to read. Thank you, Nancy. Peace to your body and spirit.

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