Thursday, March 3, 2011

In the tundra

My dad is snoring softly in his bedroom, wrapped in a red blanket like one of those glow worms kids take to bed. Sometimes the snores are deeper, louder breaths and sometimes they stop in rthym and I hope he isn't disturbed by my typing out here in the living room. My mom always points out that his hearing has diminished from all the flying in the Air Force, but I think he hears some things that are quiet. Although he didn't hear the double-beep this morning at 7:30 when the IV nutrients had done their overnight, 12-hour feeding.

He was nearly dead to us last week.

I came out 3 weeks ago and stayed for 8 days. He had just been admitted to the hospital after 3 weeks of vomiting that built up some ulcers in his stomach and gave him esophagitis. In early January, the test results came back that the chemo trial he was in hadn't been working to diminish the tumor on his kidney. It had grown actually - only slightly, but a rather significant sign that treatment wasn't working. He decided then to take a break from chemo. His other options were to try 2 different combinations of chemo, but if it hadn't been working he wasn't feeling optimistic that it would now. He preferred to get some energy back, some taste buds, and some of his hair. Despite his decision, at the beginning of February, he was referred away from Mayo Clinic (through which he participated in the cancer treatment trial) to a more local doctor and hospital and tried chemo again. It might have been this round of chemo that set him into vomiting, or - we wondered at the time - a flu, or - we guessed later - a spread in the cancer.

Regardless, the 3 weeks of vomiting had dehydrated him, left him malnutritioned, and decreased his weight to a hollow 150lbs. When I came out the first time, we were focused on keeping my mother sane (after 3 weeks of living with and watching a stubborn old man that she loved deteriorate), figuring out if the cancer had spread, and being around him for our own and his comfort. The hospital sucked, really. The main dietitian was clueless about how to help us, and wasn't very offering to do so. The doctor treating him, while liked by my parents for his passion for aviation and long career of treating cancer patients, wasn't wonderfully communicative or helpful in alleviating our concerns: had the cancer spread? should we do an MRI or CT scan? if there's no blockage in his intestines, what's impeding digestion? is cancer causing the motility issues? We went from a liquid diet (broths, popsicles) to soft food diet (cream of chicken soup, mashed potatoes) and back again as the food just sat like a lump in his stomach, caused vomiting, or created discomfort. And because of the chemo treatment earlier in the week and debilitating vomiting, his blood count hadn't risen enough to consider new, aggressive chemo to treat the purported spread of cancer along his intestinal lining near his stomach.

Finally though, his counts were high enough and he got some chemo. But he still wasn't eating enough or getting enough nutrition. He'd been hydrated well through IVs, but there weren't enough calories getting into his system. So, on the day I flew back to DC, a foggy day that impeded me from driving the hour to the hospital or my sister driving the 3-hours to my parents from Minneapolis, he got a feeding tube. It killed me that he was all alone for this procedure. That he and we were stranded. But it went well.

I was back for a week in DC and heard only reports over the phone that the feeding tube was creating discomfort, that he wasn't gaining weight, that he couldn't sleep, that the pain in his lower back (a knot in a muscle from laying in one place for too long? the tumor on the kidney?) caused him more discomfort and he was starting oxycodone, that he would now get IV nutrients (something that we'd heard the insurance company would only cover for patients who could not eat at all - a bad sign). My mother again thought that my sister and I should come back. Sometimes we were convinced this could be the short end to the slow drawn out finality. Sometimes we thought it was just a dip in the rollercoaster. Sometimes we thought days, weeks, or a couple of months, or hours. Sometimes we thought about Uncle Jim who had a tumor in his brain from smoking cigarettes, and who, just 4 hours after he and my aunt had met with the doctor to discuss further chemo treatment, had a heart attack as she bathed him in the hotel bathtub. Sometimes we thought about Christmas this year. Or, was last year the last?

I decided to buy a ticket for Sunday. It would give me the Friday in DC to celebrate my 90-days of sobriety, and a Saturday to pack. I cried in the office on Thursday, told a few co-workers that he'd gotten worse, fantasized darkly about the end, tried to stay strong, and started to plan how to do my Step 9 amends to him. Then, Friday I heard that he was looking better and feeling better, making jokes, and gaining weight. Saturday, I heard he was even better. I started wondering why I was returning. Not that I wanted to pass up a moment with my family, but I would miss more work and would miss meetings, and I wasn't sure that my presence would mean so much.

I arrived Sunday to my parents' house. My mom, sister, and her dogs. I was feeling out of my element. It's kind of like a wolf pack. Me and my mom alone and I know I'm Alpha, take charge, do the adult-required role, lead the decisions. But my sister is also an Alpha - if not more so than I am. I'm more of a collaborative coalition leader. She's more of a power-grabber, disseminating information as needed. I sulked a bit and felt out of the loop. Monday morning I pointed out to her that it would be nice (aka more appropriate) if she would put the speakerphone on when dad called for his morning hello from the hospital so we could all hear. I tried not to be mean, but I know it came out snappy.

....................... as much as I got on that one.

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