Tuesday, January 3, 2017

#SOL17: DNRs, Healing and Not Knowing

July 2016, (CitraSolv papers, original photographs, digital remix)
I.

I used to believe in miracles. I used to know that section about the light and dark and miracles from Whitman's Leaves of Grass by heart.

Now I know less and perhaps that's for the better.

II.

As I sat next to Rob's hospital bed watching as he slept in early February I told myself that even though he was unable to walk anymore that this malady was a passing concern that could and would be reversed once the cancer treatment took hold.

A few days earlier when we learned that Rob had a third staph infection he said to me, "Strap in. This is the hard part. This is why cancer is so hard to beat."

And I thought, Yes, exactly.  If this was easy the death rate wouldn't be so high." I believed then that Rob would be the exception.

It wasn't until the morphine, dilaudid, and fentanyl began to scramble Rob's reality that I felt doubt gain a bit of purchase. But even when my husband thought he was a teenager in Brooklyn, or when he perfected a British accent and spoke as if he was an admiral in his majesty's navy, I thought we would need to deal with addiction,  but at the end Rob would recover his life.

Stage 4 lung cancer and 3 staph infections in the space of four months should have had me reconsidering the idea of miracles--but it did not.

I was too scared to believe in anything but miracles.


III.

Looking back I can see that there was little reason to hope and yet hope is not the work of reason for it is born out of desire and is not necessarily rational.  I wanted my husband to live. I did not want to be alone. I believed Rob would beat the cancer against all odds and the odds were stacked against him. And so on the night of Devon's 17th birthday, Dev was home alone and I was at the hospital with Rob.  An attending doctor who I did not know asked me to step out into the hallway.  Rob was running a high fever and was having trouble breathing.  He was heavily medicated and had told me he wanted to go out that night with his friends. He was angry and frustrated. He thought he was at home in the house he grew up in in Brooklyn. He was adamant that he needed to get out of bed.

Does your husband have a DNR? 
A DNR? I asked.
Does he want to be resuscitated? Placed on life support? Have you discussed this with him?

Four weeks earlier Rob underwent spinal surgery and our oncologist had told us that Rob would never have been permitted to have the surgery if death was imminent.

We want him to live. I told the doctor whose name to this day I don't know.

Rob has at the very least six more months to live. That' what our oncologist said. So, yes we want him to live.

Your husband's lungs, both of them are filling. The antibiotics aren't working. We think there may be an embolism.

Are you saying Rob will die?

His lungs are filling and he may need life support in order to breathe.

We've never talked about this. Never. He was supposed to get his first immunotherapy treatment earlier today but couldn't because of this fever. Today is our son's 17th birthday. Rob cannot die on Devon's birthday. Do you understand? He can't. If he needs life support give it to him. What do I need to sign?

Rob was placed on high flow oxygen and moved from the oncology floor to a step down unit where he was assigned a nurse who kept watch that night. By late evening, Rob's fever broke and he became cognizant of what was happening. Gone was the unruly teenager and the British admiral. He asked me to read from a book of Icelandic myths that a doctor he had met a few weeks earlier had given him.

Outside the door, the nurse remained. He was the most reassuring person I met at the hospital. He was so competent. So kind. Inside the room, Rob rested and listened as I read aloud, drifting to sleep as the sound of the oxygen machine hummed and clanked. Five days later, early in the morning, the oncologist would tell us that Rob's prognosis had changed and that he was terminal. Rob refused all life support, signed the DNR, and by the next week he was home. Less than three weeks later he would die.

IV.

In the days before Rob died I prayed for a miracle. I think now that I was praying more for me than him for no one would have wanted him to live as he was. As his breathing worsened and became more and more labored, he woke in the middle of the night frightened for he had started to choke. I learned how to clear his airway and I began to pray for his death. In the last hour of his life, I told him it was okay to end this fight and to gain peace. I said what I thought he might need to hear if he could hear at all. Or at least I think I said these things. If I failed to say this then know that these are the things I would have wanted to say. It's hard to know what I said and what I thought.

V.

Miracles are unexpected and I don't believe in miracles much these days.  I do remain open to the unexpected however.

What I know, partial as it is, is that spiritual matters are beyond the end of my reach. Why such early death happens to good people like Rob I still don't understand. Why a great dad dies and leaves behind his just-turned-17-year-old son I can't fathom. Bad things happen to good people all over this world. And what these months have revealed is that I don't need to know why bad things happen in order to live. I just need to accept that they do.

To not know and to accept not knowing is a step towards healing. I wonder if a belief in miracles stands in the way of healing. Such a belief allows me to hold responsibility in abeyance.

I want to remain open to the unexpected, but not cowered by reality.

14 comments:

  1. Fascinating. A year on, and you're writing things I had no way to tell you back then.

    ReplyDelete
  2. Sometimes you need to believes in miracles and magical thinking just to get through the present. We all do what we have to do...and then we accept, heal, and move on.

    ReplyDelete
    Replies
    1. Thank you Tara. I know that magical thinking serves a purpose. I slip in and out of it still, not quite so frequently as after Rob's death. Always appreciate your insights.

      Delete
  3. Feelings help us survive the day to day, and if those feelings hold the wish for miracles, & that's okay. It's where we are then. I prefer to call those feelings "hope", and reading your words, I think you were given those few more weeks, and were able to find your Rob again for a little while. It is never enough, of course, yet you got past your son's birthday, a gift itself. Hugs for the new year, and hope in the day to day.

    ReplyDelete
    Replies
    1. We did get through an awful lot. Thank you Linda.

      Delete
  4. Your writing takes my breath away. Such a hard, hard experience. And yet you are writing your way through it. I admire your strength! And I am so sorry that you and your son have had to walk through this.

    ReplyDelete
    Replies
    1. I am writing my way through. The writing helps in ways I could never have known.

      Delete
  5. Powerful words: "To not know and to accept not knowing is a step towards healing." And I think that it is a step of faith. Blessings to you in the new year. BTW, I believe in miracles.

    ReplyDelete
  6. Again your writing is just so expressive. Your words allow all of us to see what gut wrenching grief is like. Thank you for sharing these intimate thoughts. Please consider at some point to make these entries into a book. I've said your writing rivals "When Breath Becomes Air" but now see your writing as a companion to "Being Mortal".

    ReplyDelete
    Replies
    1. I am thinking about a book Deb. When Breath becomes Air was a favorite book of mine from last year. I also did try Being Mortal, but it wasn't what I thought it would be so I read selectively. Thank you aways for your encouragement.

      Delete
  7. Mary Ann, Oh, gosh. Thank you for baring your soul and your grief. You've made it through almost a year, and you're still standing. Maybe that IS the miracle, that we can love and lose and survive. Holding you in my thoughts.

    ReplyDelete
    Replies
    1. I hadn't considered that Laura. Perhaps you are right. Thanks.

      Delete