Suddenly, Death

I attended a workshop right after my job ended in May, and in a conversation with the program leader, he asked if Ken’s death had been sudden.  Funny that in retrospect, it did seem sudden.  I know that sounds crazy, what with four years of warning, but the two of us always had hope for a better outcome.  We were aware of the dismal odds of long term survival with this rare and aggressive cancer, but still we had faith in our medical team, our complementary therapies, and our prayer, and trusted that we could beat those odds.  In fact, up until just about a week before Ken died, I had hope, even after he was receiving hospice care.

Ken spent a significant amount of time in the hospital since his cancer diagnosis, most of it due to infections, either from the physical alterations due to the first resection or from the artificial biliary drains he needed for the last year and half of his life, and more than once I feared that sepsis was going to kill him.  And there were also surgeries and procedures, with their risks and occasional complications.  And the chemotherapy, with its side effects.  Looking back, just thinking about the number of medical interventions he tolerated over those years is overwhelming.  But we always kept a positive outlook.  Even with the close calls and the dire diagnosis, hope returned again and again after every setback.

For several months at the end of 2022, we were working with a group that studies off-label use of approved drugs for rare cancers.  During Ken’s last hospitalization, his oncologist agreed to pursue insurance approval of an experimental chemotherapy recommended by that group.  We had hope that once he was stable, he could try this one last treatment.  When we all learned just hours later that the situation was much more dire than we realized and soon after that the decision was made to enter hospice, I was still hopeful for the sanctuary of home.  And once he was home, when the hemorrhaging stopped and he was no longer retaining fluid, I convinced myself for a few days that he looked better, and we would start the experimental therapy as soon as he regained some strength.  Hope is a powerful drug.

Every morning my phone displays a photograph from its storage cache.  More often than not, it is a photo of Ken.  And in those photos from the last year of his life, I see how much he changed physically, how apparent it was that the cancer had spread.  I knew that he had lost his muscle mass and no longer had much stamina.  But whenever I looked at him during those months, I mostly saw the person I remembered, not so much his diseased body.  And even though in the retrospective of those photographs I can now see his obvious decline, I also see him fishing in his kayak or showing off his catch at the beach, the two of us dancing at a wedding or enjoying dinner out, him relaxing with our children and family and friends.  In between working so hard to keep him alive, we were busy living.  There were certainly things we did in anticipation of the likelihood that he would predecease me, but we tried to minimize the time we spent planning for death mostly because continuing to live seemed more important.

So yes, his death did seem sudden.  Because we had hope, because we were focused on life.     

A little over two weeks after starting hospice, he needed a catheter and finally I sobered up from hope and recognized that this time there would be no recovery.  For nine days our kids and I lived without hope as we watched him die.  Nine days of anticipation may sound like a long time, but it was a blip compared to the decades I spent expecting a different ending.  Now I face a countless number of days knowing that our hope will never be realized.

For those who lose their loved one without any warning, I don’t intend to diminish the unique trauma of a truly sudden and unexpected loss.  I do not take for granted the opportunity I had to focus on Ken’s needs and say all the things that I wanted to say for those last few years.  But his death still seemed sudden and unexpected, because how could I imagine life without him?  I don’t think we can prepare ourselves emotionally for losing someone we love, no matter what the circumstances.

Seven months later, I still can’t believe he is gone, I still feel like I am blinking in the headlights.  Because suddenly, I see the life that Ken and I created together doesn’t function quite the same without him; a life where, despite its familiarity, I no longer fit in certain corners.  Our family, our friendships, the business he ran where I worked for the last fifteen years:  the dynamics of all of these relationships have been permanently changed due to his absence.  And the person who once eased my transitions through change is no longer here to help me make sense of it all.

Hope saw us through the difficulties of living with a terminal disease, even if it occasionally muddled our view of reality.  Maybe the fog of grief is achieving a similar purpose as it shields me from being exposed to too much despair at once.  For better or worse, while hope helped us look forward, to move ahead, grief keeps me mired in the past, knowing that the future we envisioned can never be more than a dream.  The world has moved on, while I find myself in a murky suspension between our past and my future, where I can’t fathom being hopeful for anything else.  In my grief, I have stillness to offset the suddenness, and time to process the shock of the unimaginable, but none of it feels all that comfortable for someone who is accustomed to moving forward.