The oncology team at UCSF has always made it clear to us that if anything dire happens to Tad we need to get him to UCSF as soon as possible. "Come straight here. Do not go to your local hospital."
So it was with a certain mix of surprise and resentment that I heard a doc I'd never met before tell me over the phone with absolute expediency that he couldn't possibly admit Tad once he had pronounced the fateful words: "I think I need to be admitted now."
For weeks we had been dealing with multiple side effects of his chemotherapy and I had been feeling that I needed more in-home care support. At the same time I wanted to respect both Tad's need to be home as long as possible and UCSF's non-chalant attitude about the whole thing. They had always contended that this was a mostly outpatient chemo and that everything would be fine. When I contacted them to ask how to manage this symptom or that they rarely had no solutions to offer.
We went in for a consult and Kelly, the nurse practitioner here at our local oncologist's office in Santa Cruz suggested in a moment of panic I take Tad to the Santa Cruz emergency department to stabilize him before transport to UCSF. And so reluctantly I drove him to Dominican Hospital where they announced to me that his blood pressure was non-existent and things were very touch-and-go.
They kept filling him with more and more fluids hoping he could maintain his blood pressure and his heart would stop beating crazily but to no avail. I watched as some strange machine heated a bag of red blood then pumped it into his veins in ten minutes - a procedure which takes 2 hours by drip.
The words "hospice" began to be mentioned here and there after transferring him to Intensive Care.
The "intensivists" (love that word!) recounted the all-too-common scenario they'd seen time and again whereby patients are promised extended lives by university oncologists then end up in the local ER. They resented having to be the ones who do a reality check with the patient. One of them even shared an ongoing joke about why coffins are sealed; the punch line had something to do with keeping oncologists at bay.
I made my case that Tad had actually been in this state before, at THIS stage of chemotherapy and the main difference being that all of the other times he had been in a very controlled, inpatient environment at UCSF.
I am not opposed to hospice per se but it seemed premature.
They continued the intensive care and kept calling UCSF in the hopes of getting some input. They were finally able to get a hold of his oncologist. While this collecting of information and deciding what to do was playing out - something much bigger was happening: we were being treated like real people with concerns and even opinions and I could see we were receiving the care of a wide net of people who knew Tad.
Tad's doc of many years came by to visit and along with the intensivist we had two half-hour conversations about pain management, end of life care, chemo, symptoms. At times they referred to me and my wisdom as the person who had been caring for him for weeks. Sometimes they even said "I don't know" which always reassures me. Twice his sweet, caring local GP had long conversations sharing her ideas and inviting our opinions and feelings then pulled away saying, "Okay, now I need to make some clinical decisions." It was very refreshing.
The local nurses who have been giving Tad transfusions for months began calling and coming by to visit. His local GP had to leave town but on her way to a mission in Uganda she called from Newark to check up on him. Even the folks from Seattle where we are headed for a consultation were calling to ask how he was doing, then how I was doing.
I went home that night and slept more soundly than I had in months. It occurred to me that I had walked away feeling fully confident these people had our best interest at heart. I also realized I had rarely had that feeling with the oncology docs at UCSF - only with the nurses charged with executing their orders. I had always walked away feeling that they were only sharing part of the story with me, the sense they were constantly dancing a distancing dance. Not surprisingly I got confirmations here and there that this was in fact true.
After a few days Dominican moved Tad up to a general medicine ward. At one point a man in shirtsleeves with a stethoscope entered the room, made eye contact, extended his hand and smiled. "I'm David. I was just checking up on the two of you." I felt immediately seen and expressed my concerns about infections in the central line and whether it was still necessary. I spoke openly and frankly assuming he was the RN. It wasn't til the end that I found out he was the attending doctor. (Did I mention that til then all of the docs had introduced themselves by their first names?)
In my journey through this foreign country called healthcare I had read all the signs and symbols and assumed that caring, smiling and forthcoming meant RN or Nurse Practitioner but now that I was in the land of caring medical professionals I mis-translated.
Today Tad is getting out of the hospital. His white blood cells have quadrupled in the last few days. He is stronger, more alert, able to eat full meals. His dad and step-mom arrived from Arizona last night and are keeping him company in his little hospital room. I'm at home making bouquets and prepping the house.
This morning I wrote extensively in my diary about how I can let go of the disappointment and anger, how it's important I not cling destructively to the resentment that some caregivers don't always meet up to my expectations (an old theme in my life).
With a breath I blessed them all and announced we're graduating from UCSF with gratitude for keeping Tad alive and we're transferring to the University of Washington Seattle. Ironically as I was doing this the phone rang. It was the UCSF oncologist's assistant calling to see if I had made sure the files from Dominican were being sent to Seattle. I kindly informed her that the folks at Seattle had already made the request and were on top of things.
We will know in the coming weeks what the new geometry of Tad's care will look like. I will share it here. In the meantime we're grateful for life and the abundant love that surrounds us every moment.
(While doing a 12 hour run to San Francisco last week to pick up mail and clean underwear as well as run various errands I bumped into a nurse practitioner buddy who's worked with people with AIDS for years. He countered with the common idea that this distancing is a "necessary protection" for healthcare professionals - a notion I refute. I believe we can keep our hearts open even in the face of life's harshest reality - that we all die. This would merit a longer discussion with friends over tea.)
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Beautiful, as always.
ReplyDeleteWhen I was a professor of Family Medicine and charged with wellbeing of the residents, I saw each of them go through a process of adapting to "compassion fatigue." They had to learn how to deal with these tough and sometimes impossible human situations. Wanting to be compassionate and to care for their patients and their families, they had to deliver bad news and watch people die. It takes a toll on a person. And some of the residents did well becoming more human and more humane while others became more distant and closed off so that doctoring was much like engineering. When I talked to oncologists about their mental health they simply said that they were used to giving bad news. But the truth is that they suffered more than most, until they stopped suffering at all and paid the price in their humanity as a result.
ReplyDeleteOne of the best doctors I worked with was not only an astonishing diagnostician but a wonderful human being. Every once in a while I'd find her at her desk crying. Why? Because one of her patients had a frightening or fatal illness such as a new mother with disseminated breast cancer or someone with malignant melanoma. She hurt. She cried. She was human and her patients knew it and love her.
Rob Woodman, Ph.D., MSCP
Just today, while taking a break, I was reading from "The Five Things We Cannot Change..." by David Richo. I stopped at one paragraph in particular I just wanted to sit with and absorb. I think, Greg, you'll appreciate it.
ReplyDelete"In our culture we continually avoid looking at the reality of change and death. We act as if we were unable to handle them. Yet we come equipped with an organic, inner technology for dealing with losses and endings: We can mourn. Unless we override or numb our feelings, we can automatically feel sad, angry, and afraid when loss occurs. These are feeling of grief that help us work through the unappealing facts of death and endings. Mourning is what yes looks like when we face the conditions of existence with feeling. The fact that we are able to grieve tells us we were meant to face losses and endings and to resolve them. Our very nature, like nature itself, is calibrated to deal with death rather than to deny it."
When I was a Case Manager working with clients with AIDS just before the meds became more effective, I conducted so many memorials as each of my clients died in succession. I don't remember becoming either more hardened or overwhelmed with sorrow. Rather, I remember becoming more grateful and present. The pain and sadness came in and through, and I was just left with the divine. My experience of death itself became totally transformed. Over time, having been removed from that setting, and re-immersed in our culture, I have lost some of that perspective and embodied trust. Thank you for reminding me.
Much love,
Sunny