The gifts from that time were also the most prodigious. I was able to watch over and prepare my children because I knew what was going to happen. That is something that I will be forever grateful for, and possibly the whole of what was important to me at the time. But complicating the situation was the fact that increasingly my husband felt that remaining positive under all circumstances was going to save him from this deadly cancer. I actually believe that it kept him alive longer. But the fact is, stomach cancer, although rare, is incredibly lethal. He actually did live longer from the onset of his symptoms than most people in his situation. He survived through multiple surgeries, radiation, and two rounds of chemotherapy (one course of which 50% of patients do not complete as its side effects are so severe). But as the cancer advanced and the treatments failed, his positive outlook began to look more like a kind of insanity.
The scathing cruelty of his loan of life coming due so soon was unfathomable to him. Who could imagine such a thing? He was a strong man in his prime who loved his family with a deep intensity. He could not cope with the reality that his life was ending, nor did he have the strength to actually grieve it. He clung to whatever dwindling vestiges of the old normality that were still available to him for almost eighteen months, including working right up until a few weeks before he died. Outside of that, he took every mental shortcut he could to avoid facing the enormity of what was happening.
In the same pattern of behavior that kept him initially from telling his doctor that the antacid prescribed was having no effect on his chronic indigestion, thus delaying a proper diagnosis by nine months, he continued to minimize, rationalize and refuse. He turned his back on almost every suggestion I made. So I stopped making them unless he asked me directly.
The amount of energy it took to both swim in and at the same time delicately keep him safe from the reservoir of information of what I knew, was immense. He needed to but didn’t ask questions of his doctor, tell the truth about his symptoms, then later, make a will, fill out a DNR order, and lastly, sign up for hospice, go on oxygen. Plus a million more things dying requires of us. That we don’t want to do. I was sometimes a coach, sometimes bossy, sometimes sitting on my hands. Every day was different.
In the very end, knowing he was speeding toward death, I spent three of his last six weeks trying to get him transferred to a local hospital so he could spend as much time as he could with our children. I attempted to make a case for a palliative care. His doctors, on the other hand, were adamant that he needed procedures to keep his esophagus open. Treatment only emaciated him further and bought him just five more days of being able to swallow.
I spent a lot of time crying both in front of him and in my office, where I would sneak off to sob into a pillow when I just could not take it anymore. Some weeks it seemed the more upset I got, the more dug in and lost he became. Other times it was the only signal he’d pay attention to. I felt like I was failing all the time.
And I was frequently angry. A lot of doors got slammed in our home in the face of his stubbornness that at times made him completely withdraw. There were periods where he didn’t even realize he hadn’t spoken a direct word to anyone in days. Every doctor he saw offered a positive spin or another procedural option or an optimistic interpretation of a test or even, two weeks before he died, an offer of chemo. I stood by and watched him grab them all. Sometimes aghast and trying not to show it. Trying to intervene as little as possible, knowing that I could no more open my mouth and speak my own language about what I knew than he could admit he was dying. After one CT scan in which his surgeon buoyantly proclaimed that the fluid in his lungs was an average side effect of chemo that had ended months before, and would probably clear up soon like many other cases she’d seen, I lost all hope of my own helpfulness.
It had taken me two days just to get the strength to go to the appointment, where I was sure he would be receiving confirmation of what I had been feeling increasingly for weeks, that his cancer had metastasized to his lungs, possibly his liver too. I would lie in bed with him at night, my hands drawn to places over his body where the cancer had traveled to and which felt overheated, like a fever burning in localized spots. My hands responded to the heat with a heat of their own. “Wow,” I blurted out once. “Can you feel that?” I said without thinking. “Feel what?” he responded. My hands, so chronically cold they are a daily nuisance, felt like they were on fire.
I said nothing.
It took me almost six weeks to recover from the doctor’s almost casual insistence that he was fine. Six weeks in which his disease then advanced so fast it was like watching a dog chase a squirrel up a tree. When I could not bear the loneliness of watching his denial race his disease to the finish, I would try to articulate what a tightrope I was on. I tried to tell a few people I trusted. Family. Friends. Healers. But they loved him too and could not face how sick he was and that he could die. I tried to tell them, he is dying. I’ve known. Don’t you see?
I then endured everything from cheerleading, self-righteous coaching not to give up faith, and even being criticized for not being positive enough, for not being optimistic or supportive, and even for having no compassion for him nor for my children.