On a grey and misty day, when the sky is overcast, and I have heard sorrowful news from many places, about the return of cancer in a grown man’s body as well as a little child’s belly, why do I feel like crying?
Today, it seems as if even the sky weeps. It comes down, not salty or briny, but as fresh water, pattering gently, renewing the earth.
Don’t you sometimes feel as if the world recognizes your emotions? On a bright windy day, in kite-soaring weather, you might think the earth’s spirits are as feisty as your own wheeling, enthusiastic thoughts. Then at a solemn time like this, it seems as if the earth mourns along with families who are in pain. On occasion, our world echoes back, gently, tenderly, but on a greater scale, our human-sized grief.
After all, this fall of rain is the letting go of pent-up pressure. It is the release of something that was carried great distances, transformed and contained, until it grew too heavy to bear any longer.
Oh, rain. Fall. Fall. Weep, when I can’t. When I don’t have a particular reason to do so, except that I empathize with the news that comes today.
Mind you, no one asked me to worry about a distant family’s pain or grief. But I do. I care. It happens, I suppose, because humans are wired to have emotional connection with each other.
So today’s journal is a meditation on the news I heard from other cancer families, as well as what I have witnessed as a companion of friends in hospice and reflections from inside our own family’s journey through twice-relapsed leukemia, transplant and its aftermath.
Right now there’s an ache that seems as big as the sky’s sorrow, to know there’s pain inside these families. A different sort of pain than first learning about a dangerous diagnosis. A pain more final than wrapping your head around the threat of disease, then lifting a chin and taking a deep breath, planting your feet and looking fate in the eye, and saying, “We can get through this. There are answers. There is something to be done. We have hope.”
It’s an altogether different reality, when the experts tell you, “There’s nothing more we can do.” And that’s the news that different families received recently.
For the family who hears these words, there comes a new squaring-off with time, fate and faith. When you hear such irretrievable pronouncements, you may …
- Want to stay right where you are, put your hands over your ears; pretend you didn’t hear, you don’t know, you cannot see. Hope that if you just wait in one place a while longer, ignore it, deny it, then this bad news won’t be happening.
- Then argue, and say you’re going to find an answer, even if you have to go somewhere else, ask someone else, do something more experimental and unconventional, because this cannot possibly be all there is.
- Pray. Beg. Barter. Beseech the Creator for a miracle. Or peace. Whatever is possible.
- Eventually hold on tighter to each other, try to fill silence with everything that needs to be said, begin to check off the best and brightest experiences on your loved one’s wish list, because the calendar isn’t on your side anymore.
For a while, perhaps you think it can’t be happening. It’s not possible.
Then at some point, there’s another transition. A realization. It’s happening. Oh, Lord, this is real.
Relapse? Recurrence beyond known forms of treatment, or beyond any useful medical response at all? It’s not fair. It’s not just. It’s not logical. It’s not … it’s not anything you can easily reconcile or understand. Not at any age, but especially not a father and husband who should justifiably expect decades ahead of him, or a little child who may never attend kindergarten.
But it happens, all the same. For many families, the result of treatment after diagnosis is ultimately hope, survival, and recovery. For others, there is this other other outcome.
I feel … just a little … like I understand families who must keep vigil, make the most of their living time together and perhaps … probably … although we always hold out hope for miracles … find ways to say good-bye. Please know that I recognize that every individual and family’s journey is different. And the outcome isn’t pre-ordained, though science may say it’s predictable.
Because I can tell you more than one story … from our own years on treatment with Jessie … about children who survived, inexplicably, with amazing outcomes, after every scan and test and medical opinion said it wasn’t likely, or even possible. So it’s okay to keep holding out, at least in some quiet part of you, or maybe in the biggest, loudest part of you, for the miracle.
Meanwhile, it may be healthy to immerse yourself in this place where you are. This time … of being together in the face of farewell.
Such experiences can be profound. Meaningful. A blessing in their own way, though very difficult and wrenching. (Or something else entirely.) It depends, largely, on the family’s response, and the support of their caregivers and community.
As a family continues on this journey, they do so in the way that seems best to them. Together they think about … and feel their way toward … how to be together in the time that is given to them.
No one, bearing witness from the outside, can say what is right for someone else. We cannot step into the path, and avert a difficult journey. Change what will happen. Only the family, the patient and their loved ones, sometimes with guidance, can choose their direction, do their best with what resources they have, and go wherever this path leads them.
Meanwhile, their medical caregivers? The ones who say there isn’t anything left to do? Likely they have tried everything. And despite this insight, some specialists continue to try to prolong life. Caught up in such extreme measures and momentum, medical caregivers … and sometimes guardians and patients themselves … may seek intervention. (Which could be a viable choice, but might also be more damaging. Such decisions are best approached with much consideration, since you can’t be sure of the results, or the cost to the patient’s wellbeing.)
In the optimal scenario, part of a family’s caregiving team is thinking about different values and assessing the whole situation from an alternate perspective. This person may take the opportunity to pause events. Often we need a trusted individual, hopefully a professional who is trained and ready to handle this form of advocacy, to take on that role. Perhaps this is someone neutral, from outside the family: a trusted mentor, counselor or medical practitioner. Who can credibly say, “Wait. There are other consideration here. Comfort. Dignity. Your belief system. Let’s balance the invasiveness of more treatment, more heroic measures, with measures that will preserve quality of time.”
The healing a family may seek, at such times, is not always recovery from the diagnosis. Not anymore. Instead you wish for a dignified and peaceful letting go, that involves family and friends, and makes the most of the time that remains.
Yet even the experience of being together, and letting go, can offer a form of healing. Solace. Peace.
In the case of families treated for cancer at Childrens Hospital Boston and Dana Farber, this journey is often guided by PACT, its Palliative Care Team. For many others, it also includes hospice professionals. When such a practice is integrated into the process, it provides immeasurable resources and comfort for families.
After all, in the face of such relapses, your concept of time changes. Your focus shifts. With additional support, the energy of the family can be aimed at the most important issues: emotional and psychological interactions with each other. Other bodily concerns can be managed by a team of people who are experienced in this area. Sensitive changes in moods, emotional state or mental outlook may also be tended to, by caregivers knowledgeable about what’s happening inside the patient and family’s hearts and minds.
Just for today? So soon after families have first heard and shared this news, and their friends are just trying to let it sink in? Perhaps they aren’t yet ready for all of those concerns and negotiations, those steps and decisions.
Sometimes, it’s too soon to cry. So you let the sky weep for you. Until your own tears come.
Finally, there’s this other truth. Believe it or not, the weather will change. The sun will flicker into view, grow hot and bright again. And even in this part of a family’s journey together, when people are probably starting to understand that they may say good-bye to each other, a person may want to stand in the light, turn her face to the sky, and laugh as loudly as possible. Cast a long purple shadow across the earth. He may wish to listen as the world echoes back his presence, while he has breath to move and shape the air, to fill the wind with the sound of a human voice, human joy.
This isn’t new wisdom, although I have learned it firsthand, over time, too. It is written in many sacred texts.
Ecclesiastes 3: 1-8
3 For everything there is a season, and a time for every matter under heaven:
2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.
There is a time and a season for grief and hope, sorrow and joy, anger and serenity. One follows the other. They are all integrated. Parts of the same mortal experience. And the same sacred journey. Over and over. Again and again.
Just now, it feels comforting that the sky seems to weep for the families whose pain we cannot ease. And later on, that the same universe will grow bright and laugh with us, because that time will come, too.