This Is My Husband
The last time I remember anything resembling a normal day was Sundance this past Labor Day weekend, though even then my husband Steve was already exhibiting symptoms that two days later would be diagnosed as an aggressive transformation of his heretofore mild lymphoma.
Steve called it an adventure. I would not be so cavalier in my choice of descriptive words. There is no sugarcoating for cancer, no fitting words to describe the vulgarity of its treatment. It is brutal, unrelenting, and dehumanizing. I hate it.
At the same time, I have nothing but kind words and unbounded respect for the doctors, nurses, and caregivers who never stop trying to make it a more dignified fall from normalcy.
Never did I think I would wish so devoutly for normalcy—for just a plain old boring day filled with the same old routine, the same old problems, the same old faces, friends, family, TV shows, and bedtime.
For the duration of this questionable adventure, I have grown increasingly aware of one small phrase, used repeatedly in all of its many variations:
This is my husband.
Sundance may have originally started as an anniversary party for Steve and me, but it never falls on the actual day of our anniversary. This year that day arrived a mere five days after Sundance—three days after his diagnosis. The two of us spent the day of our 39th Anniversary in Steve's hospital room in the Neuroscience hospital at Thomas Jefferson University in Philadelphia. Steve was chatty from all the steroids he'd been given before he arrived. Within hours, I would swear that everyone in the hospital—doctors, interns, students, nurses, custodians, and nutritionists—knew more of our history than I would have thought possible to explain in such a short time.
One and all, they celebrated with us—some even returning at times to share stories from their own lives and families.
Many of us at CAMP Rehoboth had joined the fight for Marriage Equality. I knew it would be important to us. I completely underestimated just how much it would come to mean to us, and how the magic of being able to say in every situation we encountered, "this is my husband," would change our lives in far more profound ways than either one of us could possibly have ever imagined.
Our deep immersion into the medical world in recent months has proved beyond doubt that marriage provides an instant pass for signing documents, receiving information, obtaining admission at all hours and in all situations, and making all manner of decisions.
This is my husband.
No other explanation needed.
Since Christmas, we are guardedly optimistic that Steve's new chemo regimen is having positive results, but the early days of December were dark and difficult ones for us. His first regimen was not working. His second one, part of a three day stay on the Thomas Jefferson Oncology floor, caused a rare neurotoxicity that didn't let up for 27 hours of agony, despair, and humiliation for the man I love.
This is my husband. Will they save him or kill him?
Allen Jarmon braved the first snow of the season to help me through that long night. Neither one of us slept for almost 40 hours. All the nurses were patient angels, but they let me take the lead with him. I knew how to talk to him—most of the time. We were all changed by it.
This is my husband, and I will fight ferociously for him for as long as he needs me.
In the week after "the incident" as we call it on occasion, I changed my Facebook profile photo to include a green lymphoma ribbon and wrote: "The lime colored ribbon is the symbol for lymphoma. This Christmas we're collecting lime ribbons to put on a Christmas tree for Steve. I do believe we are in need of a Christmas miracle."
The outpouring from our community was immediate, and we rode that green ribbon of support all the way through the holidays. In my heart of hearts I believe we got that Christmas miracle. Steve looks better these days, some of the symptoms caused by his lymphoma have lessened. His oncologist was encouraged at our last visit. He now has another port, this one in his head, which means no more spinal taps.
This nightmare is not over yet, and he still has several rounds of very serious chemo to go. He's lost too much weight too fast, and that makes him weak.
This is my husband. We are living this winter wrapped in a blanket of prayers—and green ribbons. There are moments of joy; there are moments of pain. Sometimes they are one and the same, and the tears overflow and their source is inexplicable.
Every moment that vaguely resembles a normal day is precious to us.
We are deeply grateful to the Board and staff of CAMP Rehoboth who are helping us through this difficult period. We are blessed to live in a loving, supportive community, and there are not words to express our thanks for the cards, the words of support, the green ribbons, and the constant prayers and well wishes.
This is my husband.
This is me.
This is us. Right now. Holding on to miracles.
Murray Archibald, CAMP Co-founder and President of the Board of Directors of CAMP Rehoboth, is an artist in Rehoboth Beach. Email Murray