The simple act of truth in the face of incurable cancer

Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.

Of all things, the simple act of truth has become most important to my husband and me. We talk about my dying. It is a poignant, painful and sometimes funny honesty. We have done it after solemn consults with physicians, during long hospital stays, through gut-wrenching disappointments, and sometimes over toast and coffee on Sunday mornings.

We have learned to be forthright and unafraid of saying it out loud. We deal with small moments – planning vacations, making purchases, visiting family, entertaining old friends – in a sober and reflective way. Routine plans – Christmas with the family; the vacation cottage; an annual trip – become critical decisions. We discipline ourselves to push aside the things that are trivial. It becomes easy to ignore the cracks in the driveway and the clutter in the closet.

And we occasionally treat it with laughter although, perhaps to the horror of some, it is gallows humor. We joke that when I am gone, the piano, the house, the cars will all be his. We laugh and mimic Homer Simpson, believing he is doomed, reading a pamphlet headlined, “So You’re Going To Die.” It reminds us that we are in a real world where playfulness is a part of life.

There is no bucket list. There are no plans to see the great pyramids, kiss the Blarney Stone, or throw a party in Times Square. We look to the small things we have known for decades that have become precious to us now: a walk on the beach, a Saturday matinee movie, sharing a bowl of ice cream, holding hands as we go to sleep at night.

Details – advanced directives, the will, the attorney, the broker – are easy. These will help put affairs in order but they do not address relationships with the world and the people who inhabit it.

The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.

But most of all, the truths we come to know lie in the depth and clarity of our bonds. For me, this is reflected in the conversations with my husband, the beloved person in my world. I want him to go on with life; to find someone to share it with; to help the children as they struggle with the loss; to remember the laughter and how much we loved each other. That is all I have left to give him. And for that I extract a bittersweet promise that he will make me laugh until the end, that we will hold hands every night, that we will share the ice cream, that we will always talk about what is happening, and that I will die with him beside me.

It is the dignity, the finality, and the truth at the end of life.

Elaine Waples underwent major abdominal surgery for ovarian cancer that had metastasized to several organs. Her journey is chronicled on Care and Cost.

email

Comments are moderated before they are published. Please read the comment policy.

  • http://twitter.com/LymphomaJourney Andrew Griffith

    Powerful and moving.

  • http://www.facebook.com/profile.php?id=1523336947 Ruth Woolcock

    You’re right to talk openly about death, life, and love and to savor the humor and poignancy of each moment. Thanks for writing candidly about how you are dealing with this. I recently lost my husband to pancreatic cancer, and he tried as hard as he could to fill our futures with his love and presence. In the end death was gentle, just me as a witness, and my definition of peace will now be his face at that moment after weeks of suffering. I have to say though that being the one left behind hurts more immensely than I could ever imagine even though there are no realistic regrets.

  • Suzi Q 38

    Your story is a beautiful one.
    Thank you.
    I hope you have more days with your loved ones that you expect.
    Don’t change what you are doing.
    Thank you for writing about your life to us.

  • meyati

    I sympathize with you and your family. I’ve had some trouble with counselors trying to push me into the stages of grief and end of life, so don’t feel alone on that part. If I’m having a good day, I don’t want it ruined by having to go to a counseling appointment or cancelling one. If I have a bad day- I often want to be left alone. I hope that you haven’t had this problem. I’m so tired of the medical/social staff. Did I say that I also admire you? I hope that today is a good day for you-and many more. Thank you for making the point that your family counts a lot.

  • ButDoctorIHatePink

    I too, have terminal cancer, and so I understand in a profound way what you are saying. It is the little things in life that count; those are the things we treasure at the end. Simple times with our loved ones are more valuable than trips or diamonds. Very quickly, your wants and needs change to small pleasures mixed with sorrow.