Saturday, March 26, 2011


I'm going to miss seeing spring bloom. I've been watching from brown buds of wooden trees to tiny peeking leaves. Pink blossoms opening up. White white white petals falling over themselves. I'm going to miss seeing spring in DC.

They've moved dad over to the palliative care floor. It's 4 floors down from the outpaitent oncology floor he was on. I guess the physical relocation is fitting. He wants to go home. There's no more chemo. The radiation treatments he received relieved some pain of the tumor on his kidney. There's also ketamine, which when my sister told me, brought me back to the days of ravers and glow sticks when kids spoke about taking horse tranquilizers. She said he'd come home with heavy pain meds in a lock box. We joked that we could sell that shit on the street for a pretty penny. And other pain meds.

She says they've talked to hospice to understand what they provide. While we searched for in-home nurse care that wouldn't break the bank, we found nothing. They live in the countryside, where families do the caretaking. Not a lot of freed-up nurses. But I guess hospice visits often and whenever we hit a "rough patch" and need them to call -- which is apparently what happened to us while we were taking care of him before: learned how to set up the TP feeding (bag to a line, line to his port) and had to deal with air bubbles (omg, are we going to kill him if one gets in his line?! omg there's air in the bag! omg, I can't pull back on his port to draw any blood to check if the line's clear - is it clogged?) and then him vomiting all night long. Hospice can come to help. And there won't be vomiting now. The stomach pump takes care of that. TP in, stomach bile out. There is no use of his GI tract now, which the palliative care doctor says puts him on the shorter side of the timeline. If they said 6-12 weeks 2 weeks ago. Well, we can do the math.

Hospitals are not known for their planning skills we're learning. Last time we checked him out, we found out on the day that he'd be released. A nurse from home care, a rep from home care plus, a case worker - all disorganized, all unplanned, all a disarray to us. Yesterday they said he would come home on Tuesday, with medical equipment needing delivery on Monday.

Mother Nature is not helpful. The weather conditions have fucked my family over. Eight inches of snow last week, a friend came to plow and missed the driveway, the thaw that has turned their country driveway into a mud pit. How to get my dad home, how to get the hospital equipment to the house, how to ease the coming and goings for hospice care. There was a panic in my sister's voice. A defeated, worn out, almost crazy discussion with her last night. My mom has hit the end of her rope.

There have been new financial troubles and revelations that post-dad might not be as rosy as hoped. This brings out anger and resentment, fear and desperateness. I've imagined his frail body in the bed in the house, hooked up to machines, and not being able to help myself from pinching him -- hard, repeatedly. I'm angry at his selfishness, his stubbornness, his childish decisions that he made in a complicated marriage. But I won't pinch him. It's the pillow experiment - talk to the pillow as if it's him, punch it, get the anger out. "You've become a different person to me. Who are you? You are not the father I knew and loved, adored, and suffered the strongest love-hate relationship with. Who are you? Why did you do this? How could you?" I'm wrestling with this now.

A shell of a woman, I told my therapist. I'm coming and going and not sure if I'm coming or going. I'm finding I can't cry at home - home from work, be brave and be funny when calling my sister and mom and then entertain myself with Deadwood. I can't cry in AA meetings - too humiliating for my pride. I can cry one-on-one with a friend or (terribly unfortunately) my boss or the therapist. I can sob in the therapist's office. And then, clean myself up, and head back to the metro and back to my office. The therapist said I need to do something that will fill me up this weekend - fill this shell of a woman. What do I do? I asked her. I feel helpless right now. How do I process this? What is death? I watched a National Geographic "Moment of Death". It did nothing for me. How did I get dressed this morning? How am I walking from the metro to my office? Someone in my agency offered me a new job. I can't even think about that.

I feel so far away from his changes. I will likely be shocked. I feel so far away to help well. My sister and mother have been so strong. I'm trying to feed off of this routine of work, meeting, TV, sleep - because right now is a vacation. When I get there this week, it will be hell. A complicated, sad, frustrating, overwhelming hell. But I have to be there. I have to be there for him. I'm terribly scared he'll be sad or afraid. I want him surrounded by love, despite the mistakes he's made.

There's today - a sunny, lovely, chilly spring day in DC. There's tonight - maybe an AA meeting. There's tomorrow - 4 months sober, AA meeting with friends to cheer my chip, brunch with other friends, laundry, packing. There's Monday - work from home, head to the train station, go to Philly with my boss. There's Tuesday - all day Philly events with boss, train station, back to DC, back home. There's Wednesday - an early flight to Wisconsin. And then... there's I have no idea. The great unknown. The void and the whirlwind. The calm and the up-every-hour. The sun through the window and the possible pushing cars out of mud in haste and panic. The test of strength and endurance. As my sister says, this is a marathon. Energy drinks at the wayside, energy bars, but keep moving forward. My alcoholic mother is an energy sap and spew of negativity. She's been fucked over and is fucked up. It will be a sister thing. Patience when we lose ours, listening when all there is is to spit exhaustion, holding, crying, cursing, trying to remember to eat, cooking, feeding, caring, waking, napping, and maybe some work in there if I can.

I don't want to go, I can't wait to go, I need to go now. I hate him, I love him, I'm scared for him. Coming, going, sitting. Mostly I have no idea.

Sunday, March 20, 2011


They've said he's got 6-12 weeks to live. That was last week.

I'm going back out there end of this month.

It's been hard. Really hard. Verge of tears constantly. Not finding any connection in AA meetings, not picked up a regular sponsor. I'm not interested in drinking - thank god I've been relieved of the craving to drink - but I often wish I had something to take away the pain. I started back on melatonin to get sleepy at night and to sleep the night. And, since I ended "Six Feet Under" I'm now on "Deadwood." I guess those are my "drugs" these days.

I bought a couch - finally. After living in this grown-up's apartment with a bare living room for a year. It should make it here in time for me to need the cozy, curl-up comfort. I've already bought a standing lamp for it and am eyeing some rugs and a matching chair. I like this apartment and the building. I'm looking forward to biking around (bought an air pump and plan to visit a pally who can tweak the gears so they're aligned correctly), and taking walks in the Glover Park forest.

Some days I wish he'd die to relieve himself of the pain and discomfort, but he's got more living to do. It seems some of us die more quickly in the body and slower in the mind, and others (like my grandmother) die more quickly in the mind with the body slowly catching up. My grandfather had the best way out: a heart attack. No lingering long bedside medications, no mirror to see the tufts of hair go, no added surgery or chemo or radiation to give 10% of a chance at one extra week, no dementia to forget who you are or where you are or how to dress, no creaky hips, no broken nothing.

I can't fathom what it will be like without my dad in my life. I don't want to have to whisper to a ghost when I have questions about mechanics, need analysis relayed from Consumer Reports, need a dad hug or hear his pride.

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.