Last year, I wrote an article, “My Husband has a brain tumor,” for this magazine. It was the story of our unplanned journey after learning that my husband, Ted, had a serious form of brain cancer, for which the diagnosis is dire and the treatment rigorous. Long-term survival, just 5 to 10 percent. We had come to learn that living each day fully and with hope for recovery was the only way to combat our fear, discouragement and frustration.
Because Ted had done so well for a couple of years, we were lulled into thinking he was in that rare long-term survival category. He was strong. His mother was nearing 100 years old. Good genetics, and all that. Oh, how I prayed for him to be one of the lucky ones – my church’s ritual prayers, and beautiful prayers given to me by a hospital chaplain. Each night, I’d scream “GET OUT” at his tumor area, which always amused him and relieved me, as though the ferociousness of my vocal vibrations and message would keep the beast away. A certain complacency set in, very welcome, until we found out that the tumor was cooking up, and then a new one, and so on.
In early 2014, he entered a clinical trial to receive the drug Avastin every other week, plus a new study drug or a placebo weekly, both by infusion. Now, going on trips longer than about a week would be impossible. But that was the least of our worries.
In April, Ted’s symptoms dramatically worsened, and an urgent trip to his oncologist revealed he had pneumonia. Even with antibiotics, it was a very, very slow crawl back to try to regain his former activity level. His walking was much worse. There were occasional falls, no matter how careful we were. His verbal expression started to show signs of decline, very frustrating for him, such a brilliant thinker with such a fine command of language. He began in-home occupational, physical and speech therapy. Each day presented new struggles, yet we were still determined to make our lives as “normal” as possible. I hired a young man, part time, to help us, and my brother became a regular helper, traveling from out of state several days a week.
Ted’s condition worsened and MRI results showed more growth. He was removed from the study and we found out he’d been getting the placebo. Now, he’d qualify for the study drug, and it was started. But his level of functioning continued to deteriorate, and within three weeks, he was in the hospital.
There were two hospital admissions that summer, separated by 12 days at a nursing home. I stayed with him most of the day and nearly every night – watched like a hawk, catching med errors before they happened, possibly missing some others, noting the amazing lack of communication between shifts, departments, and wondering all the while if any of it would make a difference. To go into institutional specifics would be pointless at this juncture, but in my mind, I still shake my head at some of it, even though he had many excellent caregivers.
During the second hospitalization, Ted’s oncologist used the word “hospice.”
“I would go to the ends of the earth,” he said, to cure him.
I still am moved by his deep compassion, for it’s got to be a terrible task to tell someone that now there is no hope for recovery, but instead, a time for comfort.
Arrangements were made to transfer him from the hospital to a hospice house. I was scared to death. What had seemed like a wonderful, thoughtful, soothing idea once upon a time now was the enemy, a sinister beast to be feared and loathed, the difference between concept and reality.
“The average length of stay is five to seven days,” said more than one soft voice in those first days.
The kind staff and whole setup of hospice is lovely, except for the fact that it’s a place to (comfortably) die. Unless there is a recovery, for which I still hoped.
I wanted a miracle.
I talked to him, fed him, asked staff to keep him in his regular clothes – yes, go ahead and cut the T-shirts up the back, that’s fine. Anything but those hospital gowns. The days flowed together in a routine no longer resembling our former life. Now, it was about compassionate, basic care-giving by staff, medication or no medication – his choice – and visits from family, friends, and our priest. My niece came from New York, and she and my son played guitar and sang to Ted and me every night for a week. When she had to leave, my son continued the nightly visits after work. Our other children and relatives came up to Maine, from baby to centenarian, using up every scrap of vacation time from work to be with Ted and me, traveling hundreds of miles to tend to us and the house. For now, I, too, was a full-time resident at hospice with him, fully moved in, clothes and all, using the facilities, helping feed him the take-out food of his choosing, or the wonderful meals prepared there; pulling up the sofa-on-wheels to his bed so we could sleep together and snuggle and so I could gently rub his head they way he liked. I’d monitor his every breath, and finally, at 1 or 2 in the morning, rest my head on his chest, whispering the last mental monologue of prayers, and fall asleep.
With cards, family pictures and spoken prayers, the room became a composite of love on every available shelf, bulletin board, and more, as days turned to weeks.
Average length of stay five to seven days?
The hospice doctor told me he was still “here” because he came in well-nourished, well-loved, and with a strong heart and lungs.
Around day 19, he was stable enough to go home with hospice in place, or go to a nursing home – a plan “TBA.” Inquiries proved unnecessary, though.
Two days later, Ted experienced a dramatic worsening of symptoms – seizure-like respiratory spasms. He could no longer safely swallow, so a different medicine would be used to “cover” that, via ports under his skin. I knew all too well that it meant that Ted would be pretty much inaccessible to anyone in his last days. That felt unbearable to me, although to him, it had to have been a relief from the severely distressing symptoms.
But earlier that same day? Well, it was what is referred to as a “rally” day. His son was getting ready to head back to Philadelphia, and after much laughing together, Ted whispered, “I love you.” A little while later, Ted and I spent about an hour in some kind of communication that was a cloud of tears, words, hugs, kisses, more hugs, reassurances. I cannot really remember much specifically, except that it felt very connected, almost magical. I never stopped wishing for the damned tumors to go away and leave my wonderful Ted alone. That day, I’d fed him small bites of lunch – beef stew, prepared by the hospice chef. Ted’s enjoyment of that small meal made it seem like it was the best thing he had ever tasted.
Many memories – intimate memories – a look, a smile, a joke, a complaint – all weave into the essence of what makes a relationship whole, bound tighter with deep love and affection, and a high level of mutual caring over time. My cousin’s wife, half of our “best couple” at our wedding, later told me that Ted was not afraid to die, but was worried about me. She had assured him they would take care of me. Ted and I spoke little of death in the last days. Ever hopeful, I had to struggle to find my voice at the end, telling him I would love him always and forever, as he had so often told me.
On Sept. 26, I was cradling Ted in my arms, whispering to him in our makeshift bed. The day was just dawning. Our nurse Larry sat quietly near, by request. On that gentle morning, Ted took his last few breaths. His soul, released to wherever lovely souls go, was at peace.
I believe that somewhere, he is once again hiking, photographing, flying, running, communing with nature, and yes, sending signs and making visits to me and those he loved so much. I miss him. And I love him more each day, something I never thought was possible. Relationships and love do not end with earthly death.
And now, I’m alone. I have an abundance of amazing friends and a wonderful, loving family. And I am alone. I don’t mind the alone part so much. But I very much mind being without Ted.
In the time before he died, I told him I would finish the book that we had been working on together, someday. It will be a while before I can do that. It’s going to be a long time before I have a day that isn’t sprinkled, or flooded, with tears – a reflection of love lost, and kept.
Kathy Eliscu, who lives in Westbrook, writes “Lightly Roasted,” for Maine Women magazine. She blogs at www.kathyeliscu.com.
Ted White and Kathy Eliscu together fought Ted’s brain tumor. He died Sept. 26, 2014. “It’s going to be a long time before I have a day that isn’t sprinkled, or flooded, with tears – a reflection of love lost, and kept,” writes Eliscu.File photo by Rich Obrey