“Did you see that? Did the image just jump?” she asks.

We’re watching Orphan Black, and she asks again, using a term in the series, “Did you see that or am I glitching?”

Unsure, I reply that there were some flashing cut scenes.

The holiday period in recent years have been challenging; such as spending 2018 and 2019 with daily visits to the radiation unit. This year, we made it a point to get, and have, the holiday tree set up. The simple twinkles on it, and the fireplace, leave a warm glow and outdoorsy scent to the living room. Christmas is at the end of the week. The temperature outside is falling and a snow storm about to settle in; winter is near.

These symptoms were subtle. More subtle than those caused during treatment like chemotherapy. Except she was no longer doing chemotherapy. By the way, eschewing chemo, as mentioned in the last post, does not imply eschewing all treatment.

In ebbs and flows, there were the usual constipation, the slight nausea, the dull pains, the fatigue. By themselves, these seemed par for the course of experiences through the years. Sneaking in came the muscle weaknesses masking with the fatigue, the slight nausea constant, the retching and vomiting mixing with the nausea.

Then the pain Christmas night. With her level of pain tolerance, only twice in the past five years would I equate this level of pain. Either in 2016, when her spinal cord was under metastatic compression, and in 2019, when I found out she had crawled up the stairs because her groin was on fire. This time it radiated from outside her liver up through her right shoulder. Pain medicine provided the relief; and gifted the side effects of nausea and increased constipation.

Then the other symptoms surfaced. One afternoon, her gait became ataxic like that of a drunk. She started searching, with awareness of doing so, for words. This required concentration on her part to complete.

The beginning of January, scheduled scans were done. It was rather evident that the rate of progression in the liver was similar to when a line of chemo failed last year. It is also rather enlarged. Additionally, a new lesion in her brain. This, the radiation oncologists opined that radiation to the brain was ill advised, being a trade off on quality of life; we felt the same.

It was at this juncture that a blood draw also revealed severe hypercalcemia, illuminating some of her neurologic/neuromuscular and gastro-intenstinal changes. This is a state where the serum calcium levels are high, and in her case, at what is considered crisis levels. Hypercalcemia due to cancer is still not managed very well in current medical era, and most interventions are temporary. “Encephalopathy”, the fancy term for altered mental and neurological status, doesn’t happen only from this. It is commonly observed when there is a large rise of toxic ammonia due to a failing liver from any disease; “hepatic encephalopathy”. Yes, her labs also showed ammonia levels taking a jump up.

Annoying biology and chemistry. To deal with the ammonia, one common way to rid it is by drawing water into the large intestine via osmotic laxatives (an incredibly sweet indigestible sugar syrup) for frequent bowel movement exits. Oh yippee, wait. Doesn’t that cause a decrease in body fluid volume thus increasing the molarity of calcium?

So everything in medical management becomes a more intricate web. Tugging at one thread easily skews another. The oncologist and palliative doctors’ tones switch abruptly from reticence in discussing hospice or prognostication, or what curves in functional ability look like, to repeatedly suggesting they send off the referral forms for hospice.

We’ve always planned for end of life care at home if choice allowed, to match her wishes. Care from a hospice team would give her the comfort of home, rather than the colder sounds and abstractions of a hospital or LTC facility. We understand everyone makes different choices. There are tradeoffs. In the USA, once hospice is triggered, all insurance and care is redirected through the hospice company. The not-so-subtle clause: there will be no coverage for labs, nor any treatment for one’s illness, nor anything related to one’s illness. That last bit. Pause. Sounds like a terrible sucker punch. We feel blessed however to have connected in our personal network, a prior hospice doctor. The chance to converse with her equipped us with the right knowledge to advocate for Annie’s wishes. Especially mental acuity and mobility, which are high on her definition for quality of life, more so than simply pain control. Thus having treatments for her comfort and quality of life, mitigating the hypercalcemia, however temporary, is important to us.

In 2018, we managed to occupy my bags more with medications and a cooler of injections than clothes, and traveled to the Australian states of Victoria and Tasmania. A journal entry had me giving her a Neupogen shot in the belly (for low white counts due to treatment) to start one morning, and ending with sunset at the twelve apostles along the coast, with musings as to how much time and opportunities lay ahead for infusing joy and care into her days with us.

Four years later on the same date, Annie begins hospice care, in the comfort of home. The infusion of joy and care however, does not have to stop.

What is hospice? Many ask. I too wish that this is not as opaque a concept to all of us without prior experience, outside of the palliative medical field. If not for two books[*], my conceptions of hospice would just be misconceptions. It really deserves a different post in itself. A quote from Dr Cicely Saunders, considered the founder of modern hospice movement in the 1960s, who wanted to approach the care of the dying with love and compassion, should vaguely illustrate. She said, “You matter because you are. You matter until the last moment of your life, and we will do all we can not only to help you die peacefully but also to live until you die.”

And excerpted from Atul Gawande’s 2010 New Yorker article, as he the surgeon observed a hospice nurse, Creed:

Wasn’t the goal of hospice to let nature take its course?
​"That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

We are very grateful for the nurse assigned to us. She gets us, advocates for Annie to have the best possible days in the present, and per our wishes, speaks refreshingly candidly with us.

Throughout these years and times, the palliative doctors, and even more so now the hospice team, have provided us tools to “hack”. The lack of a better word in my mind. Medical likes to call it “symptom management”. All sorts of tricks and drugs of modern medicine, that despite each having its own way of exacting a physical or mental price, allows her to choose life lived with quality. We leverage how we time and use them to do daily activities, be functional physically and mentally, and spend time with friends and loved ones. Other than those who know, from experience or otherwise, people see the afflicted and think they look great; oblivious to what is, and how. Hacks are just that though, temporary and cumulatively pricey. And we’re hacking it even more now. Yes, that last sentence exposes the quiet desperation that exists in the corner of my being despite our general peace. The hacking brings smiles or a pleasant ease when it feels worthwhile, and stings ever so slightly when it feels otherwise, wasted; because limited time has always been rather precious to waste.

The analogy of grasping sand felt very true one evening for me as I held her. After all the preparation, readiness, and acceptance, the soul’s instinct will still occasionally yank hard at the heart to grab on to time. That desperation, once soothed to the corner, resurfacing, bargaining, for more a late autumn’s sunset than a fast winter one. And in that squeeze, the sands of time simply flow faster out of one’s grasp.

However, an older post reminds that time is not for us or me to grasp. It is only for cradling gently in the present moment as a gift. We’ve always wanted to walk this path living “how”, not “how long”. Grasping at time would distract the focus of caring. And that should be given to the one I can still embrace.

The process of dying does become a more intimate journey. Especially if we do not know if there will be suddenness or gradualness. Intimate for us, and for those who have drawn close. It is a privilege for me to have this time. With her, and with you. How does she feel about this arc of time? She puts it well and simply to friends that have asked: Despite the varied emotions, in the undercurrent of it all, there is a sense of peace, joy and gratitude.

Have I ever mentioned that one of her name’s (安, “an”, thus annie) description is 安宁(“ānníng”, which means “tranquility”?

Lest I romanticize this process, it is one that is not easy to see. Or be part of. Some of you have already witnessed the spontaneous vomiting. There are already hard days, and there will be harder or unexpected ones no doubt, but that does not mean they are all bad. Perhaps that is why “dying”, in current times, can often be an awkward word. A process abstracted away to something many fear is too traumatic or undesirable of an experience to be near. That would make it a blanket statement though. Some of your recent heartfelt conversations around shared experiences are meaningful; be they of loved ones with illness, or recent passings of a mother, father, friend or spouse. Recently too, dear friends K&G planned for an idyllic getaway together, and I cautioned that the children would likely see uncomfortable scenarios. It was plainly stated to me that they would be fine, and this was part of a process in life to learn and understand from. I find this outlook rare in current day, yet echoes one of the books. There is still learning from, and listening to, the one who will be departing. Even for me.

Our buddies, tribes and village. Deserving of a whole other post because there is much to thank. In brief, we/I’ve frequently answered through the years of support offers that we’re handling well, and when the time comes, I would say, or you would know. Other than appropriate timing because this has always been a long haul, the hesitancy to turn the tap on is because of common experiences shared by metastatic cancer patients and caregivers. Even with understanding that facets of behavior and reactions exist, doing so shines a light on the relationships in your life. What is, what you thought was, what you had let impress upon you and sacrificed time to, and what you did not know. The family and friends that simply step closer, the family and friends that withdraw after lyrical talk. Easily bringing both the closeness of felt comfort and the tinges of letdown. Though the tap has only been turned on a little, we are very grateful for the love and support that have automatically come into place in really authentic ways. We have some <intensifying adjective 🙂> amazing people in our lives.

A word meant something only between people, and life’s meaning, its virtue, had something to do with the depth of the relationships we form.
~ Paul Kalanithi, When Breath Becomes Air

The TV’s slideshow now plays photos of personal adventures and places we’ve had and been. Years I’ve been remiss in processing personal photos; the busy excuses of life. They give her mixed feelings. Of gratitude and joy, yet of wistfulness and acceptance that the same will no longer in her future. Yet, in her life’s arcs with cancer, there always were, and yet to be, moments of worthwhile memories. Including these past challenging months. Many of these moments of meaning, laughter, joy are from you or with you. Below are just a fraction of them (because sometimes we’re so caught in the moment with you we don’t get around to photos) mixed with glimpses of daily reality.

I want you always to remember me. Will you remember that I existed, and that I stood next to you here like this?
~ Haruki Murakami

ps: You may have intuited that this update is likely already outdated. Probably. More detailed updates might no longer be timely, instead, I might try to start a pinned post of sorts to make more frequent small edits as updates (email first) going forward.

[*]
Being Mortal: Medicine and What Matters in the End, Atul Gawande
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying, Maggie Callahan
NewYorker: Letting Go, What should medicine do when it can’t save your life? Atul Gawande