To the Ones Who May Never Be Cured

Letters to my patients, day 4

Photo by Noémi Macavei-Katócz on Unsplash

If I knew the date of my death, I would mourn the books that would go unread. The vast quantity of literature available overwhelms me to the point where I end up starting 3 books at one time and then struggle to finish any of them.

My bucket list might as well be titled “books I want to read.”

But.

If I knew the date of my death, I would not spend the preceding hours reading books.

Rather I would find the coziest, worn-out, dark green velvet couch and allow it to swallow me whole. I would wrap up in the sentimental, handmade quilt that my husband’s grandma passed down to him. With a teacup of Earl Grey steaming on the end table, I would beckon my favorite people to join me on this old couch. And as we face each-other, I would say every kind, loving, sentimental thing I held back for the first 27 years of my life.

If I knew the date of my death, I would have as many deep conversations as possible — with a large box of tissues nearby.

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Incurable cancer has many aliases — you are not a surgical candidate, treatment is palliative, the goal of therapy is to control the cancer, chemotherapy will continue until progression or intolerance.

After that initial visit with the oncologist, you knew time was limited. But do they have to keep using the phrase “palliative treatment” so much? Is treatment even worth it, just to buy more time? Time for what?

That is up to you.

I don’t say this to put pressure on you, as if its necessary to plan extravagant hot air balloon rides in Turkey or go scuba diving in the Caribbean to justify the extra months chemotherapy is buying you.

I say this to remind you that you are in control of your care.

So ask yourself, what if I knew the date of my death? What would I want out of the life I have left?

And then make sure you prioritize that.

Prioritize evenings with your grandchildren, watching them play softball or giggle over boardgames.

Prioritize traveling to every family wedding planned this summer, no matter how far.

Prioritize making it to your daughter’s high school graduation in 4 months. Chemo-induced sickness may be worth that.

Prioritize finally going to a concert, watching a live ballet, swimming with dolphins.

Prioritize early morning coffee on the porch with your spouse before they go to work.

Prioritize eating the best dessert from every country in Europe. Or the best burgers from every town along the California coastline.

Prioritize sewing quilts for each of your co-workers.

Prioritize doing every treatment possible to keep you alive for as long as you feel is needed.

Prioritize taking a peaceful nap on a hammock in the backyard each afternoon.

Prioritize long walks on the beach, at sunrise and sunset, everyday.

Because regardless of if your goal is life extension or life quality or a combination of both, only you can decide what that looks like.

This is complicated by pressures from family, friends, the medical team, the local grocer, anyone with an opinion. You are bombarded with recommendations to get a second opinion, just give chemotherapy a try, the last chemo was rough but this one will be easier, try a juicing diet, cold-plunging every morning can cure you (no, not really), actually don’t do any treatment because it’ll just make you sicker…

It’s so hard to make a decision, to be in control of your life goals, when you are not sure who to trust in this journey. As with any new experience, it is scary and nobody wants to “do it wrong.” Yet, unlike messing up your college career and being stuck with an extra semester of classes, the stakes are higher when deciding how to live out the end of our lives.

I am not here to offer you the answers, though I wish I had them all. My purpose is to empower you to find your own — even if they come from within you. Especially if they come from within you.

You must do what’s right for you.

And how does one figure out the right way forward? 4 simple steps.

1. Introspection

2. Outrospection

3. Observe

4. Adjust

Introspection

Define your priorities, what is worth it to make those happen, and why it matters to you. This can take other’s wishes into account, involve prayer and seeking answers from respected sources, or be a solo experience.

Outrospection

Rather than reflecting on your situation from an outside view, I invite you to outsource part of the responsibility. Find your people, the ones who understand you, love you, support you, accept you. Go over your priorities, ask for their opinions (if you want them), and allow these friends to help refine your final goals.

Observe and Adjust

When you have established the priorities, implemented your goals of care, and continued in your cancer journey — things will begin to happen. Each week will be different, even the days will differ. I invite you to observe the outcomes (or again, outsource this, having a friend observe for you).

And if the answers to these observations do not align with your priorities, make adjustments — on either side.

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It may sound like I am emphasizing quality of life over quantity. But I assure you, there is no wrong answer. I treat patients with chemotherapy every day, even people who will not be cured by these treatments. There are many reasons to opt in — medications can help improve symptoms, relieve pain, have a much better effect than expected on prolonging life.

But if the fear of dying is the only reason that you want to do treatment, to delay the inevitable, I encourage you to dig deeper. Because we are all going to die. Not today, but someday.

I don’t want you to be resting at home, within days of passing, wishing that someone had told you 3 months ago that it could have gone differently — that you had a choice.

Source

I want you to end up knowing that you played an active part in planning your last days. That you did what was right for you. You chose to see the people you love, enjoy the ocean views you grew up with, sing your favorite songs, try out the treatment, trust your care team, know when enough was enough, and find consolation in a life well spent — no matter what age you started recognizing its importance.

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If you knew the date of your death, what would you change?

Today, I am going to try finishing more of the books I start. And maybe add a few more to my bucket list.

If you are facing a diagnosis that may not be curable, take what you need:

It is okay to mourn the loss of the life I expected.

These decisions are overwhelming, but I will choose to lean on my support team.

I cannot know my future and it is okay if my decisions are not perfect, only hindsight is 20/20. I will do my best.

I will take it one day at a time.

I can change my mind as things go along.

I will find joy in the little moments, each day, and hold onto that.

Thank you for being here,

Related letters:

Someone Should Have Told You Sooner

Confronting Mortality: A provider’s thoughts on death, part 1

I Didn’t Get To Say Goodbye: A provider’s thoughts on death, part 2

This is part of a 31-day series of letters to my patients — those undergoing a work-up, diagnosis, or treatment for cancer. Topics are also focused on those caregiving and supporting individuals affected by cancer. This is not an easy journey, but you do not have to do it alone.

This is not medical advice — please consult your healthcare team for individual medical expertise.

Let me know what topics you hope to see this month! I have many of the days filled, but not all of them. I would love to hear your thoughts, experiences, or questions.

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