Writing this update has been a challenge over the past weeks. Many hours and days, the mind stayed blank and the right words could not form. Then there were nights the words flowed and journal snippets made sense, but I struggled to grasp if the words were representative of the one making the difficult personal decisions, or simply an echo of my own mind asking the self its soul’s own choices.

So perhaps, it is best to start with a simple, yet complex, sentence.

A month ago, Annie informed her oncologist of the decision to eschew further chemotherapy.

And here the long form. I have tried to reflect Annie’s thoughts authentically where they may appear. But I have always decided to let the heart write honestly and freely, which means my own journaled thoughts will inexplicably intertwine. <TL;DWTR what’s next>.

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~ windows of time ~

It is the last day of October, and I drive homewards from the Utah desert. A small window of time before her quarterly scan is usually the calmest time for me to take some self care.

However, it is also the time that a side of me cozies up in the nights, a little too comfortably, with medical journals and papers. Preparing if the next scan shows cancer progression. Where it would be and what the standard of care options the medical team would present, and how to make wise individualized choices to maximize quality of life. It sometimes leaves me lagging in the next morning’s real life interactions and activities. Yes, akin to what kids today would call a toxic relationship. It takes away much more than it gives. This time, the cozying leaves me restless.

My drive home becomes a slow punctuation of stops, rests and walks. The Umatilla National Forest in Oregon is plain by social media standards, and ignored by most driving through. That plainness however, delivers beauty in the peacefulness along abundant forest roads. Pockets of western larch are still in their beautiful autumnal gold. I stop and walk, the ground sprinkled with a dusting of early snow. Winter is coming, but not yet.

We had gotten a better summer than what a harsh infusion chemo would have delivered, after the oncologist supported trying something different. Though wrecking the body less, it did have its set of annoying side effects. The scant data had progression free for this treatment to be a median five and a half months. The numbers do not bother me, one never knows. The course of the disease is terminal, and treatments display a shortening cyclic pattern. Every consecutive line of treatment usually produces fewer results, and for a shorter time than the line before. So we had already gotten to buck the trend.

The lump in my throat came from a question that my heart blurted in challenge to my inner self, “Did you give all you could to give her an endlessly wonderful summer?”

The inner self goes silent, and I sit onto the forest ground. My brain interjects, “Are the ticks still active?” “Oh, shut up.” replies the heart, as kindly as it can. The inner self’s silence is wrenching.

Eva Cassidy’s rendition of Sting’s Fields of Gold starts to play in the ear buds. It gets to,

I never made promises lightly
And there have been some that I’ve broken
But I swear in the days still left
We’ll walk in fields of gold

The lump in the throat reforms, but the brain becomes the stoic of the lot, “Now is not the time. Get up. Move. Stay present” I robotically start the walk back. The heart and the self have a moment together.

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~ scans and questions ~

The second week of November. The nuclear PET/CT scan completes, and in hours the radiologist’s readings are online. “Innumerable liver metastases”, the first three words started. Habitually, I pull the scan images up and scroll straight to the liver to match the references. Then an older scan, post the time when an infused chemo was a dud, for comparison. We have a few days before seeing the doc. And we rehash conversations from the beginning of this journey and the beginning of this year. Déjà vu. Except this time sans options to ask and advocate for. The doc will likely present the same remaining chemotherapies again.

Treatment for metastatic breast cancer till date is always palliative, not curative. However, even though doctors know and are trained in such, the inability of most of us to sit with discomfort or gentle honesty creates the cultural pervasiveness of not using the word palliative from the get go. We are all human. “Palliative” is a word presented to patients as a different practice, a different doctor, a different component, a different time. Some people rather the comfort of white lies. I think that strips authenticity and creates more dissonance. And that dissonance here surfaces cloudy metaphors along the lines of fighting harder, and not giving up; often until it is too late to live well, to have more joy, to realize that going lucha a muerte/拼到死/fight to the death in this scenario is a feel-good denial construct created by those seldom the patient. These impressions are of low relevance to living well at the sunset of one’s life in non-curative cancer. And though we have been cognizant of this since the beginning, avoiding these imprints of society can often be a challenge.

If that sounded callous, it is without judgement to those who embrace those imprints. At this stage of the physical game of life and death where death will always win, there is no wrong choice. Some choose the comfort of knowing they suffered yet fought to keep the physical heart beating longest, willing to delay death without restoring health. That’s okay. Some choose the comfort of not choosing, relegating the choices to others. That’s okay. Some choose the comfort of illusionary hope. That’s okay. Some choose the comfort that they have the agency to live a shorter life of meaning and joy, rather than a longer life that loses its savor. That’s okay.

Endings are not always controllable. There is no defined finish line. However, the ending story arc for many patients is common. The straws offered are picked at. Though it is often said that chemo destroys the cancer and the body too, it does not hold true at later treatment lines. More often than not, the chemo or trial barely holds any cancer at bay; perhaps altering progression free survival but doing nothing for overall survival. But each straw drawn always ends and starts with a weaker body. The drumbeats of resolve dragging that body towards some finish line. Abruptly, the straws are no longer offered, and a wrecked body is sent to hospice, and in short time, followed by the finish line. In this harried trajectory for the patient, is the narrative of compassion, dignity and meaning that of the patient’s, or a fragment of comfort for the living to idealize?

That is okay too, to choose. Yet another callous question: But how many, if they could in hindsight, would chose such a path to the finish line?

When the inflection point between time and quality of life is difficult to prognosticate, how does one decide when and how to walk one’s final leg? Does it matter more to you where the finish line you cross is, or how you get to and cross it? If there is no turning back, is the imaginary summit at the end of a hike more important to you, or savoring the glow of the beautiful sunset all around you before darkness falls? And if you didn’t know how long sunset would go on for?

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~ dancing with fear ~

She interjects with pseudo jokes with numbers. Six. Six years to the second recurrence. Six to metastatic stage four. And six more to 2022. Six major lines of treatment. How many get to thrive six years with multisite metastasis, including metastatic spinal cord compression and liver metastasis?

Is there a word for the feeling that mingles gratitude and sadness?

A night passes. One fueled with college era style snacking. Well, at least slightly upgraded to stroopwafels, hot chocolate, and organic bits. Hours spent pulling at residual threads for clinical trial options that would make rolling the dice on dox worthwhile. Trials move at a fractured snails pace for most metastatic cancers, and for most trials introducing novel treatments, hepatic(liver) metastasis is an exclusion criteria. Perhaps a dance with the red devil gets her to a point of inclusion? Grasping at ether again. And towards the morning, I just read my journal and the old entries on this blog. Pondering life. My heart, my mind and my inner self sit together for a while. Each with its darkness, each with its desires, each with its way to love.

As we explore the tendrils of options and decision, we come to Doxorubicin, oft called the red devil. The first chemo she had seventeen and a half years ago. The doctor and team will offer to repeat it. She mentions the plausibility of choosing it. Vivid images of that other time flash in my head. A time she got to start from a younger, stronger state. In that instant, I had my first ever, and hopefully only, experience of what media depicts as an anxiety attack? Though I felt zero anxiety, my ears begin to hear a crescendoing ring. My body drenches itself in cold sweat. My heart drops away. My mind instinctively makes me kneel down to avoid falling, and then goes mute. The ringing surpasses the clubbing and concerts of youth, threatening to explode my head. And then silence. After a moment, Annie asks if it is because she mused about Dox. I say no. It is a lie and she knows it. I loathe myself for an instant, having let fear introduce the first blip of inauthenticity into the important juncture of this journey.

The next day comes. I tell her my fears. My fear that I would influence her in this decision. My fear of her experience should she hurtle down the path of harsh deterioration with last resort, low efficacy, supposedly minimally life-prolonging chemos. My fear that dancing the other way would blow up and leave little time to enjoy her life. I know how (we all think we know how) I would personally make the decision. But loving her implies a simplicity. To wholly support hers.

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~ decisions ~

The day of the doctor’s appointment, we arrive with no clear decisions. The three of us have honest conversations about quality of life and the future timing of hospice. The doctor says, “We’re emptying the bag here.” Strangely aligning with the bag analogy. About Dox, “You’ve already had the lifetime maximum of Dox previously, I’m okay with pushing it and using it again if we choose chemo.” There is a lifetime maximum to Dox because any more risks cardiac events, such as heart failure. The subtext we heard was: not much was going to be given before it would be shown ineffective, or whatever scant time it gave would not warrant concerns of cardiac events. So we ask the question to which we already know the answer, our humanness wistful to be wrong, “What is the chance that Dox will actually clear up the metastasis in the liver, even for a short while?” She puts her pen down, and with silent gentle eyes, softly holds that hand up to signal zero.

Possibly because the liver progression did not look as accelerated as when chemo last failed, she surprisingly suggested staying on the current medication till a scan in January. Hoping to squeeze every bit of residual benefit. Annie and I have a moment of relief, only because we didn’t feel ready to make a decision. The comfort of not making a decision. That’s okay. That evening the doctor calls. Having consulted with her group, they decided it was not prudent, and better for them to recommend the switch to another chemotherapy. We ask for the weekend to think.

The weekend’s conversations slowly fills with more clarity. The ever present question these past years. What does one consider a living a good life, and what does one consider having a good death? It was strangely helped along by talks about how one would like to be treated after one departs. Again, not meaning to be callous, and everyone has their ways. We both have similar outlooks here. It often boils down to a “funeral service”, a “memorial service”, or a “celebration of life”. For the dead? No, these serve the needs of the living. The departed is gone from this world. When time comes, I will not need a rearranged template of words to be read to know she was loved. I know. I will not need lines of platitude that she was kind, peaceful, and selfless. I know. I will not need to know she was a soul that opts to make time for a friend than make time for herself. I know. I will not need clustered little pretty picture frames to tell me she was beautiful. I know. Those who know, know. Those who do not, do not. I love her imperfections and perfections, without need to hide one half. It is a fine line between honoring the dead and appeasing the unease of the living.

Is it not better to celebrate when they are still living? Is it not better, if and while one can, to tell a loved one or a friend the love you hold for them, the acknowledgements you want to mention, or the reconciliations you wish? Words are far better in shared experiences, than words in a datacenter the departed will never read.

After the weekend, Annie reads a note to her doctor by herself. Amongst the paragraphs, is this: “I want to be able to spend the remaining good time I have free of treatment side effects and have the freedom to do more impromptu stuff with loved ones. I want the last memories that my loved ones would have of me to be me having lots of fun instead of being bounded by treatments.“

Medically, she’ll still do the quarterly infusion that helps keep her bones from falling apart, and weekly shots to keep her white counts up to handle general infection. As to how long this new period is, doctors generally hesitate to prognosticate until it is closer to the time for hospice. We have our guesses and the scan in January will give us an indication of the rate of tumor changes in the liver.

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~ a warm glow ~

What happens now? What is her likely path forwards? Well, for a period, her body will get to recover from the side effects of the previous line of treatment and she may even look and feel better. A window to live well, laugh with friends, perhaps even take some trips to relax or play. Whether this window is akin to a summer’s long sunset or a short winter one, one cannot tell. After which, a not so pretty juncture of increasing toxicity, in general or from decreasing liver function leading to effects such as delirium, or some infection/event would have her start hospice. And then in the comfort of hospice, because of an infection, an inability for the body to continue thriving, or an inability for the liver to continue performing sufficiently, she will finish her walk. And if stars align, comfortably and peacefully as wished.

As much as facing this reality appears well handled, the struggle to push away unanswerable questions, especially the selfish ones, is constant. I wake often in the middle of recent nights to the same one, “After a person you love departs, would they be lonely too?”

Five years and four months ago, I made the initial post titled “The start of a walk to remember“. It reminded me, “…there is no avoiding where the final segment ends. But we can choose how we’ll walk this path.”

Thank you, to those who been walking in some form, or along some portion, of this journey with us. Many of you have made it better.

In this arc of her story, she has chosen to savor the warm glow of a beautiful sunset in this life. It is often one of the most beautiful times on a hike. The glow will come from experiences and you, the people in our lives. If you’d like to add to it, in whatever form, please do. I’m rather sure she’d love to savor the flavor and color you add. Just as I would love to celebrate her now, in the living present.

Much love to you.

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There is no force in the world but love, and when you carry it within you, if you simply have it, even if you remain baffled as to how to use it, it will work its radiant effects and help you out of and beyond yourself: one must never lose this belief, one must simply (and if it were nothing else) endure in it.
~ Rilke

ps: It is alright to share this post as i know there are more people that would celebrate her than i have updated personally, especially since I may not have . If you have questions, even if it is a question about asking the right questions. please ask. Some of you have asked about things to do for her, for us. just ask again; i will also update this paragraph with a link to some page with more details about that before the end of the year. much love.

pps: Jan 12, 2022. I didn’t update details as I said I would in the ps did I? I will at some time, hopefully soon. But the best way is. If you’d like to do something, just do. If you’d like to ask something, just ask. Contacting me is better than contacting her if it is to ask if you can help anything. Many of you have asked about sending something. It is not necessary, but I’ve created a page in the sidebar as many have asked: gifts-for-annie