The kingdom of the sick

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor

Not being a big fan of New Years Eve I am not bothered to make an occasion out of it. I went to bed as usual around 10pm but got up to watch the multi coloured fire works fizzing and exploding into the dark smokey sky from my bedroom window.  I prefer New Years Day and the grey quiet days that follow, the seasonal frenzy is over and there are no diaries to be found anywhere in the shops!  It is a good opportunity to take stock of what has passed and what the new year might hold for me, 2016 was an annus horriblis for the world and for me health wise.  My last post was in May 2016 At last some good news and I am not even going to attempt to catch up in any detail.

Treatment wise, I continue on Revlimid, the much hated Dexamethasone and for the last few cycles a traditional chemo agent called Cyclophosphamide to try and strengthen the Revlimid and avoid the need for a double dose of Dex which I found unbearable. The boss describes my disease as stable but I feel like I am on the usual rollercoaster, my light chains varying each cycle between 100 to 800, bobbing up and down, currently 404mg/litre at the end of the 15th cycle. Although I find this treatment regime a real struggle and the toughest yet, I know I need to keep on it for as long as it is holding my disease stable before switching to a new treatment otherwise my options will start to run out fast. I have come to terms with the fact that I will most likely be on treatment for the rest of my life, that there will never be a period of drug free remission or my light chains getting into normal range, the best I can hope for is that any new treatment regime I start isn’t as hard as this one, perhaps more effective and gives me better quality of life.

I saw an excellent musical last year called  A Pacifists Guide to the War on Cancer. A funny and moving examination of life with cancer with a great song about entering the kingdom of the sick and hoping at some point to return to the kingdom of the well or maybe not. I was interested by the idea which I thought the writer of the play had come up with but later discovered that Susan Sontag wrote about in her essay, Illness as Metaphor.  Last year, more so than at any other time since my diagnosis I feel I have taken up permanent residence in this metaphoric kingdom which unless you have stayed there is I imagine hard to understand. I mean I look well don’t I?  It is a world where every day I am aware of my health, managing my health is a full time job. There hospital appointments and stays (four emergency admissions to hospital last year), countless blood tests, copious amounts of medication, persistent and continual viral infections, self administered daily injections, infusions, chronic gut issues, fatigue, insomnia, low mood and anxiety and so much waiting. Waiting to feel better, waiting for results, waiting for appointments, waiting in pharmacy, waiting for a bad moment to pass, waiting can be exhausting. I’m not saying it’s all grim, it is just different. I’ve got friends here, family too, I don’t have to pretend to be upbeat and I feel safe. We can share our experiences, our illnesses and our fears and disappointments without boring anyone except ourselves. I can be authentic.

I am increasingly disconnected from the well world. Fatigue, chemo brain,  loss of confidence and not being able to do the things I used to do in it contribute to this. I am happy for my friends currently in good health who are enjoying their lives, their work, pursuing their interests and passions but I’ll admit to a touch of envy and self pity too. I wouldn’t want them to not talk about stuff that they are doing or planning to do but it reminds me that I am not able plan anything like “normal “people do, much more than a few days in advance or arranging something then having to cancel it or not go, because of  infection, steroid crashing or simply being too tired.

I am frequently asked where I’m off to next on my travels, anything planned? Answer is it has become more difficult, more trouble than pleasure whilst on this treatment. Travel insurance is expensive, flying increases the risk of infection, I need to consider access to medical centres if I get ill and then there is the fatigue, steroid mood swings and gut issues that get in the way of enjoying the holiday and spoiling it for the people I am with.The desire is outweighed by the obstacles. Having said that I did have a lovely time in Cornwall in the summer last year, a road trip of sorts in my fancy new (to me) convertible and then the ferry over to the beautiful Scilly Isles. Swimming, walking, cycling and lots of boat trips to the remote off islands.  Because I was away for nearly three weeks, some of the time on my own, I didn’t matter if I had a bad day because there was time for me to have a good day.  In early September, a spontaneous break 0n my own to Copenhagen, the cheap flight which spurred me proving to be a false economy! I got to see some of locations of  for filming of my favourite Nordic noir dramas and ate lots of pickled herrings.

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Since Copenhagen I have not been anywhere, apart from a spell in hospital with a high temperature when I got back. After several years of thinking about getting a dog or a cat, I finally decided on a older rescue cat and set aside October and November to settle her in. I was looking for a grey, minimalist, sleek, shorthaired cat and ended up with a very pretty fluffy white and ginger furry toy but I couldn’t be happier despite a rocky start when she nearly had as many health issues as me! She has transformed my life and I feel less lonely because of her presence. Stroking her and listening to her soft guttural purring is a great stress reliever. So here is me and Meg and just Meg.

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In spite of all the moaning about the world I now inhabit, there are, have been and will be times of enjoyment and pleasure, things to appreciate and be grateful for. It is better if I try not to think of the future or the past and concentrate on living in the present. My focus must be on what I can do, not what I can’t do anymore and also not to give myself a hard time if I don’t “do” anything at all! In the words of Alan Bennett I’m keeping on keeping on.

The Towhee

The Towhee

December 21st, the solstice … yard birds huddle against the advance of winter.

 

 

 

 

 

 

The Towhee

Needles of sleet fell all throughout the night        

  And the towhee pecks at the hardened crust,

    Seeking the moist carpet of leaves below.

      But it is too deep. Only the memory

        Of his stutter step foraging remains:

 

Of hopping ahead and jumping backwards,

  Of when he tossed aloft the ground cover,

    The turning of each leaf, shoving, pulling,

      And searching for the mysteries beneath.

        He’d been so happy to be that busy

 

With the bounty of everlasting work,

  Patient in the quest for a tiny seed,

    The egg of an insect, a spent morsel.

      He flies to the white paper birch and joins 

        With the juncos and the chipping sparrow

 

Perched in the ribs of the tree’s skeleton

  Under the grey breast of the winter sky.

    He waits for the promise of tomorrow

      In the biting wind and the falling snow,

        Warmed by the furnace of his colossal heart.

 

New numbers in the drill.

Tagged: Columbia River Gorge, Hood River Valley, little things, nature, poetry, winter, winter solstice, writing

Winter Into Spring

“Nature does not hurry, yet everything is accomplished.”

Lao Tzu

The East Hills

The East Hills

Last Saturday, a winter storm approached from eastern Oregon. Clouds clotted the sky and through the night needle-like flakes drifted and covered the roads. At dawn, moisture arrived from the west and stalled against the frigid air. Shoulder to shoulder, the weather wrestled above the forested valleys of Hood River, dropping wet feathers of snow long into the night.

By daybreak, the clash subsided. Rain and traffic denuded the sleet upon the city’s streets and ice lay crusted next to the curbs as I walked to a morning appointment at Dr. V’s, my chiropractor. I see him frequently for persistent back pain. The problem is not related to my cancer, multiple myeloma. My disease often leads to bone deterioration and crumbling spines, but this pain has its source in the soft tissue of muscle and my misspent youth.

Winter Into Spring

Winter Into Spring

It’s about two miles to the Doc’s office, downhill one way and up on the return. I wore rain gear and stashed a collapsible umbrella in my day pack. Occasionally, sunlight pierced the marbled sky and mist rose from the pavement and smoldered with the illusion of warmth. But scowls of cloud soon returned and frowned on everyone who ventured outside. Though the rain held back, I trod uncleared sidewalks beneath leafless trees bleeding moisture from the quarreling storms.

When I reached Oak Street, the scent of fresh baked pastry wafted uphill from the small cafes in town. I arrived early for my visit with Dr. V, damp and hungry.

Pine Street Bakery

Pine Street Bakery

The Doc and his wife run the clinic alone. Our friendship goes back many, many years and shares the vicissitudes of parenthood. We talked about the upcoming birth of my first grandchild, due on St. Patrick’s Day. My son and his wife chose to forego knowing beforehand the baby’s gender, opting instead to be surprised at the time of delivery. We laughed as I shared the dreams I’d had of the child being first a girl and then a boy.

Afterwards, when I stepped outside, a rain shower dimpled the puddles. I headed south, under the bloom of my umbrella. Atop the plateau of 12th Street, I entered the Pine Street Bakery. I nibbled and sipped and watched as walkers dodged the splash of passing cars. Rested and fed, I set out for home.

Looking Out

Looking Out

Along the way, a varied thrush squealed from its perch on a lilac bush and a fricassee of wild bird chatter simmered in the thickets. The mysteries and miracles of spring and my grandchild, still suspended in the deep sleep of their gestations, accompanied me on my walk through the rain into the future of what is known and the wonder at what is not.

Chilly

I got my scooter stuck in the snow. The hysterically funny part is that the snow was all of 1 inch deep. But when I pushed my go button, the wheels just spun and left me right where I was. I tried rocking my weight forward and back and then side to side, but no go. I ended up on my feet behind the scooter, trying to use it to support me as I worked the joystick to control movement.  Still no go. I was sitting back in the chair considering my predicament when a couple came walking up, their dog on a leash. They were in their late sixties or so, out for a stroll.  Seeing my problem, the man came forward to push the scooter while I worked the joystick. For a few wonderful inches this worked. And then the scooter stopped abruptly and threw me forward and onto the snowy ground. “Oh, God.” said the man. “Oh, dear.” said the woman. “That really sucked,” I said, spitting out some snow.  The guy apologized all over himself and I brushed it off along with a load of snow. “It’s okay,” I said. “The ground broke my fall.” He looked at me a moment and then he smiled and told me he was glad I was okay.  Between us, we managed to get the scooter to a bare spot of asphalt where we said our goodbyes and each went on our way. I managed to get about a half a block before I found myself stuck again. Since I was only a block from home, I called my wife on my cell and told her I was stuck and where I was. A moment later I saw her poke her head out the front door, scanning up and down the road. I waved and she returned it. Another moment and she came out putting on her parka. “This is why you have a car that carries your scooter.” she said. “Well, I was just getting some air and went to the end of the block and back. It’s just too slick out here. With her pushing and me working the controls, we got it into the house ten minutes later. Sometimes it’s the little things that can make or break a day. Normally a handy thing to have, my scooter just proved it could be a wicked sadist. Which is one of those things we muse over, like not getting cold as a kid.

Getting the Drift

The snow just kept coming. With winds howling a banshhe cry as it wound its way throught the trees and buffeted the buildings of the tiny farm, the snow just kept coming. It didn’t fall so much as race in a horizontal unending tide. Already the drifted snow had reached the base of the second story windows, and showed no sign of waning. The house was lit with hurricane lamps and candles, the hiss of the lamps harmonizing with the song of the wind outside the windows. Power had gone out hours ago, so we spent our time in the kitchen where the wood stove that produced the family meals radiated its warmth. Some of that heat wound its way through the ceiling, warming the floors of the rooms above, but not with sufficiency. We would be glad of the thick down quilts piled on our beds to keep us snug through the night. Although the scene might be interpreted as a kind of arctic hell, we were relaxed as the we sat about the stove and chatted or read in the dim and flickering light that divided the spaces with alternating light and dark areas. The conversations ringed the subject of past New Hampshire winters, a source of awe for my child ears. Warmed with cocoa we were tucked into our beds and swallowed by the puffy down mattresses and quilts around nine o’clock.

The morning broke with brilliant sunshine streaming through the upper windows; the rooms below were bathed in a bluish glow of reflected light. It came through the windows, filtered by the snows that stacked twelve to fifteen feet in depth. With a Christmas morning excitement, we kids filed down the stairs in our wool pajamas, wrapped in the quilts we pulled from our beds and they dragged behind us and we thumped down the stairs to breakfast. Pancakes and syrup, maple syrup we had taken as sap from the many maple trees and boiled down and down to thick viscocity was dumped freely on the stacks. We more shovelled than ate, anxious to get outside and see what wonderland that mother nature had drawn in the passing night.

The front door was frozen. Ice crystals framed the doorway and we had to tug again and again before the door finally saw it our ways. It opened suddenly when our pulls finally overcame the grip of the ice and snow. We all said “ooh” and “ahh” as the open door revealed nothing save a wall of white, shaped exactly like the door even to the little pit of the door knocker that sat at eye level. A shallow tunnel where the doorknob had been. Trapped! All of the downstairs windows revealed the deep snow drifts that oddly enough favored all four walls of the house, showing that the winds in the night had come from every direction. The grownups bade us to go ahead and pummel our way through the door, telling us not to worry about the snow that would cascade into the mud room as we attacked the white wall. We had to get to the barn, save the cows and chickens, goats and pigs woul have to go without food or water.

Endless Winter

This is one of the longest cold spells I can ever remember here. I’m not sure of the exact number of days, or the official snowfall totals, but I believe it’s been below freezing for about a month. And we’ve had 4-5 snowfalls of at least 4-6″. We still have about 8″ of snow on the ground most places. The main roads are clear, but the side roads are icy and treacherous. There’s no end in sight right now: we’ve got at least another week of below-freezing weather predicted, and another snow coming this weekend.

It’s not much by Minneapolis standards (or even my hometown), but in these parts, that’s a lot. And being mostly housebound means I’m completely without excuses for this mess…

(Cousin #3 & Sis bundled up for sledding.)