Part Two of The End Creeps Closer

Part Two: The Mental & Emotional

Do you know the acronym SNAFU? It stands for situation normal all fouled up. That pretty much characterizes my daily experience since late November 2023. If you haven’t read the updated Part One: The Medical in my blog, now would be a good time to catch up on the context for Part Two.

From January 2024 -- when I got a diagnosis of stage four cancer and a prognosis of six to twenty-four months -- until August, I lived in the acceptance phase of Kübler-Ross’s grief model. This is supposedly the last process of the adjustment patients go through after getting the news of a terminal illness. Did I skip the denial, anger, bargaining, and depression processes?

I don’t think so. And that’s consistent with Kübler-Ross’s belief that her grief model wasn’t meant to be sequential stages. Nor was it meant to apply to friends and family, because her research was all with patients, many of them in end-of-life hospice care. I started at the place considered by many as the conclusion of the model.

Despite that one panic attack described in Part One when the interventional radiologist wanted to put a drain in through my backside, I’m just not a person usually prone to hysterics when confronted with what others might find distressing personal news. Nor have I even felt anxious about the implications of getting a bad diagnosis like cancer or a prognosis of having two years left to live.

In fact, I felt very little when the oncologists first came to visit. Things that may provoke extreme anxiety in others simply register in me as situations to cognitively process. I was taking this cancer thing more calmly than expected. Some may call that being in denial. I call it just coping with what life throws at me.

“Just so you know,” I said to Dr. V, “if it seems like I’m in denial or not taking this seriously, what’s happening is that I tend to have delayed emotional reactions to things.”

“Good to know,” she said. That information seemed to release some kind of pressure she felt to be careful with how diagnosis and treatment options were discussed. That was helpful to me. Now things could be discussed rationally without fear of scaring me or stressing me out. Now I could get information that wasn’t sanitized or circuitous. I wasn’t afraid of dying as long as that could be accomplished without pain and a prolonged period of feeling incapacitated, and too nauseous to eat.

I didn’t ask many questions right away. I just took everything in, which is typical of me by nature and intention. Like a sponge, I absorbed options, speculations, and possible timelines without reacting emotionally, neither internally nor outwardly.

I’d have to admit, though, that being in limbo such as not knowing an exact date for my demise tends to make me a little annoyed. I mean, how inconsiderate of the universe, or karma to keep me guessing. I could get so much more done beforehand, if I just had a definite deadline.

Hmm, now that term, deadline, takes on a deeper meaning than it did 50 plus years ago in my journalism training.

My mind was whirling, nonetheless. There were pragmatic questions to be answered. What was going to change in my remaining time here? What will I be needing? Can I finish up the projects I was currently working on? How can I protect my kids from being faced with lots of debt and other hassles after I die? Questions that, except for the last one, couldn’t really be answered in advance by anyone else but me.

(I know some of you will be looking for my answers to those questions.  They will be in Part Four: The Spiritual & Practical, tbp probably in September or October 2024)

I’m not sure why I didn’t feel anxious. Everyone certainly expected me to be distraught. Nurses especially during my more than five weeks total as an inpatient seemed quite puzzled that I was taking a terminal cancer diagnosis in stride.

Time and again I was offered Lorazepam, an anti-anxiolytic medication. “It will help you sleep,” a nurse told me.

“It’s an anti-anxiety drug,” I countered, “and I don’t want to have my moods medicated.” I didn’t tell them, but between you and me, I’d much rather take a flower essence remedy to increase clarity of mind to make good decisions. But energy medicine like that isn’t known or trusted in the conventional Western medicine world. “Besides, you know what would really help me sleep? If people would stop coming in here at all hours of the night,” I said it as a joke, but I was quite serious.

Ignoring my attempt at humor, the nurse said, “Well, the doctor ordered it to be available to you so we have to offer it.” She apparently expected I would give in to the authority figure.

“Still, I’m not going to take a medication I don’t want and don’t need.” I was firm in my argument.

After that, I noticed the nurses were more cautious about introducing new drugs to me when the daily blood tests showed various things being below the range of normal. “Your magnesium is low, so I have some of that for you today.”

“Uh, no, I’m not going to take that. Magnesium causes diarrhea, and I don’t need that on top of everything else.”

“So you want to refuse the magnesium?” The nurse sounded incredulous but she didn’t try to argue me into it. “What about the blood thinner?  It’s a preventative against getting blood clots.”

“No, I don’t need either of those.” I got the sense that she saw me as an obstinate child or cantankerous, ignorant senior citizen. Oddly, though, refusing various medications gave me a feeling of empowerment. I might have cancer but I wasn’t going to be a complacent recipient of what my intuition told me wasn’t necessary.

What emotion I did have was mostly frustration about constantly getting conflicting information from too many practitioners from different disciplines. One hospitalist told me I had no dietary restrictions, but another wanted low fiber.

One oncologist wanted to start me on chemotherapy immediately, another said waiting until I was discharged and had talked to palliative care and hospice would be fine. One expected Medicare to cover cancer treatment, the other said it was too expensive without insurance when my particular Medicare Advantage plan wasn’t listed as accepted by the cancer clinic. She strongly implied I should forego chemo.

Every physician wanted to load me up with more drugs, curative and preventive, yet they all told me it was my decision. How I was supposed to know enough to make decisions without having been through med school was beyond me. I wanted less confusion. It was hard to have confidence in my medical team when they seemed unable to get their act in tune. Relying on my bodily-felt intuition was crucial.

While I was on IV antibiotics I got daily visits from infectious disease specialist Dr. R. He also prescribed an opioid and an anti-nausea med. A hospitalist – which as I understand is a sort of general practice coordinator – prescribed an additional narcotic to take when the initial one didn’t outlast the pain it reduced for a few hours. The oncologist prescribed two additional anti-nausea meds.

I started feeling like a pin cushion. Daily antibiotic drips, frequent liquid potassium in my vein, blood transfusions when the daily labs showed me as anemic kept me tethered to the IV pole and wall. Stay ahead of the pain and nausea, everyone said. That meant opioids for pain every six hours, different anti-nausea meds every four hours.

When a rash appeared, chemo was delayed. I was given steroids for a rash. Taking all these meds was more distressing to me than having cancer. I began to resent all the drugs getting pushed on me.

The conventional wisdom of staying ahead of the pain and nausea meant taking the meds before I felt the need for them. Even though I understood the logic of that, I hated doing it. How would I know that I wasn’t having pain and nausea if I kept taking the meds when I wasn’t experiencing either condition?

Strangely, no one could answer that question. That annoyed me, but I saw the humor in it. The most recent narcotic resupply came from a palliative care staffer who argued that she’d put in the prescription order so I would have the medications “just in case” I needed them. It seemed to me that it was such standard practice to prescribe an unlimited amount of drugs that they had no normal cut off point if I wasn’t showing signs of addiction.

Silently I vowed I would as soon as possible turn to naturopathic medical care for the healing power of nature, botanical supplements, nutraceuticals, superfoods, medicinal mushrooms, and other complementary and energy medicine protocols. I have friends who are naturopathic physicians and energy medicine practitioners. And I had taught at the premier naturopathic medicine university in the country. I trusted the science of that system far more than the conventional Western model.

Even so, I didn’t want to get attached to the idea of going into remission, as the chances of that were so iffy. Holding that kind of elusive hope seemed an unproductive use of my time and energy. My focus was on meeting death with grace and without whining. Maybe it was the writer in me who didn’t want my obituary to contain that cliché of having had a ‘battle with cancer’.

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Complaining that something happening to me is unfair, or that I deserve better is not my style. My mind just doesn’t go down that path. Maybe I had read too many novels in which self-serving, unsavory characters engaged in it’s not fair whining. Atlas Shrugged comes to mind as one example. I had long ago become determined not to be that kind of person. So when cancer showed up, it didn’t occur to me to think it was unfair or that I deserved better.

“Where do you get your strength?” M, a palliative care staffer, asked, noting my lack of emotion about having cancer and not being in a perpetual puddle of tears and fears.

“I guess it helps that I’m trained as a transpersonal psychologist, and that I taught a course in grief and loss to med students for eleven years. I know how to manage end of life stress. And I resonate with some of the Buddhist principles like mindfulness and equanimity. Not over-reacting to things is very helpful. Just taking life as it comes, focusing on what makes me laugh, not wasting energy fighting against what I can’t control.

“Sometimes, though, I do wonder if I’m not taking this cancer thing seriously,” I said, almost feeling like I was missing something by not being anxious and upset.

“Hmm, well if it helps,” M said, “I hear it as being pretty balanced. You’ve scheduled a consult at the cancer clinic to see what different options there might be that won’t make you as sick as the chemo did. You’re asking about nutraceuticals, superfoods, and supplements to reverse the damage chemo did to your immune system and tissues. It’s not like you are ignoring it. You’re paying attention and making your own choices about what is offered to you.”

“That’s true.” It was nice to get this validation. “Maybe I’d feel differently if this were happening in my 20s or 30s. But being already 74, it’s kind of okay with me. I never wanted to live long enough to become enfeebled, or lose my cognitive abilities or my independence to take care of myself.”

“You want quality of life more than quantity,” she said.

“Exactly. I have a DNR in my records. No heroic measures for me.”

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Next in this tale is The Dilemma of Writing The End Creeps Closer.

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© 2024 Deah Curry . All Rights Reserved. No part of this digital mini-memoir published as a blog post may be reproduced or transmitted in any form or by any means, except for sharing the link to it on social media. Thank you for reading. Watch for parts three and four to be published on this blog only. Cover designed at Snappa.