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.
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.