(posted by Linda)
I sleep for maybe four hours and wake up with a brain that feels like molten lead. I stumble around our tiny condo, taking a shower, making coffee, trying to figure out what to wear to the hospital. A million worries swirl around in my shocked and sleep-deprived mind.
Bob is dying. In a few short months, he’ll be gone.
This place isn’t kitted out for a dying person with dementia. I can’t sleep in the other room, and this Tempurpedic weighs 500 lbs. What if he falls over it? There is only one door, and nine concrete stairs up or down. I try to imagine hospice nurses moving equipment in and out of here. I am ashamed of the half-finished bathroom, the crumbling floors. I finally gave up trying to do it all this summer, went to the beach, and just quit cleaning. This place is going to need so much time and attention before anyone else comes in here, it’s incredible. How am I going to do everything that needs to be done?
Bob is dying. In a few short months, he’ll be gone.
We don’t have a lot of money, and I can’t quit work. Can we even afford hospice at all? No. I think of the horrible times that are going to come. Can he stand being in that condition? Will my husband even know me anymore? If he doesn’t, if he’s that unaware, well, okay. If he does—I shudder to think of that spark I knew, of his particular awareness, trapped inside a body and brain that don’t work anymore.
Bob is dying. In a few short months, he’ll be gone.
One obvious thought that’s totally missing from all this whirlwind cognition is: How can this be happening/This can’t be happening. That experience is for people who’ve already had good lives. After you’ve grown up in a deeply dysfunctional family, been so socially maladjusted that the neighborhood children and the kids at school hit you, yelled at you, and threw gum in your hair until your father died in a plane crash when you were twelve, you chose a career you wouldn’t be happy in because you had no sense of individuality at all and were afraid of what family would say if you changed your mind, had the college money you would need spent by other family members before you turned eighteen, saw your financial future pretty much disappear because your student loan payments made it impossible to afford health insurance and you needed two major surgeries, faced the fact that your family was hopelessly ill and would never get better, than had to face the fact that your dream of becoming a bestselling novelist was naive and childish and you were going to have to give it up, you don’t need to ask if something horrible like malignant brain cancer truly is a reality in your life. You know it’s a reality.
I am too tired to drive the Mustang; it’s a stick shift and the last stick shift I drove was a Yugo back in the nineties. I take my trusty little Pontiac over the river to the hospital, stopping on the way at the 7-11 on Libbie to pick up Bob’s favorite Coke Zero. By the time I get there Bob has already been for body CT scans to check for cancer in the rest of his body. The results are negative. I try not to think what this means: that this is a primary brain tumor and that much more likely to be the dreaded Grade IV.
Bob’s sons have beaten me there. At family gatherings like Christmas and Thanksgiving, games like euchre and Scrabble are a staple; Bob has asked them to bring games to pass the time, but since he’s really fumbling for words now, the boys have only brought cards.
I have always had a euchre block; despite making A’s in subjects like calculus and physics and earning an advanced degree, I have never been able to absorb the rules of this simple card game. Add to that my molten-lead headache and the fact that I haven’t even tried to play it in almost a year, and I am absolutely hopeless. My playing is a disaster. The boys have split up and partnered Adam with Bob and Eric with me, since today neither of us can play well.
Eric explains the rules to me for the third time today, but my molten-lead brain refuses to take them in. Bob is dying. In a few short months, he’ll be gone. How are we going to pay off his credit card? I’m going to have to turn right around and sell this car we just bought. Can I even handle the insurance on one car without his paycheck? Will we have to file bankruptcy? As we play they boys are advising us to file for divorce so I don’t lose the run-down little condo I bought before we were married. Do we really have to get divorced just so we can pay our bills?
I make my tenth stupid mistake. Eric loses his temper. “Will you just quit saying you’re stupid and try to learn this game?” he shouts, throwing his cards down.
But what am I supposed to say? “I just found out that your father has the most malignant brain cancer known. Radiation and chemo don’t do anything for this. His chances of living even two years are dismal. I couldn’t sleep at all last night. I’m reeling in shock and my brain simply won’t work at all, so please excuse me.”
No, clearly I cannot say that. The guys want to hope for a few more days, and I have to let them. If I told them, they would argue with me, anyway. So I keep hanging my head and repeating, “I’m really sorry. I’m just stupid, and I cannot understand this game,” over and over like a parrot, which only makes Eric angrier.
Steroids are a mainstay of brain cancer treatment. All that growth and pressure within the calvarium only makes the symptoms worse. Neurosurgeons try to reduce brain swelling with monster doses of dexamethasone, a corticosteroid ten times more potent than prednisone, known on the neuroscience floor by its brand name, Decadron, and affectionately known in the veterinary world simply as “dex.” As the nurses pop in and out with more and more dex, I look up from the card game to ask how much my husband is getting.
“Six milligrams…” the nurse says, and I relax. I am thinking of the side effects of potent steroids, which are legion.
“…every six hours,” she finishes, and I stifle a gasp.
Holy shit. No wonder they are running in here getting blood glucoses so often, and no wonder my diabetic husband’s blood sugar is slowly going through the roof. I can only hope they’ve remembered the antacid, especially when they add a pain reliever for his headache, and they have: Pepcid. But the dex is clearly helping Bob, who is talking more easily and remembering words better already—which makes me question the current shift away from it in veterinary medicine, where its use in head and spinal cord injuries used to be mandatory.
The beds in this ward tilt and fold all the way up to serve as chairs. If we really squish together Bob and I can use his bed as a love seat, which is good because there are four of us and hospital regulations forbid more than two chairs per room. Tired as I am, I try to outlast the boys until visiting hours are over. After twenty-five years as a PI my husband can play the strong silent type with the best of them, but in private he’s every girl’s dream: a snuggler. I know he is joking and acting brave for the boys, but I also know he needs what he always wants before he goes to sleep—kisses and a big, warm cuddle.
It’s nine PM and the boys put their cards away and say goodnight. Bob signs a few of his checks so I can go home and mail his bills for him. We crank the hospital bed out flat. I climb onto the bed with my husband, and we hold one another and weep.