This morning I woke up up 7 wrapped desperately around my serpentine pregnancy pillow, pillowing my useless liver as my phone moaned to the heartbreak and triumph of a Jenni Rivera song set to some forgotten alarm on my phone. Yaaaa sees m'olvidoooooo tu nombre y tu appelliiiidoooooo! she wails. I've forgotten everything of you. I've forgotten your first and even your last name. Not all of us are strong or lucky like Jenni. I regularly push things away from the front of my mine. Once I failed to call to mind the name of a particularly heart-breaking ex of mine and my surprise and glee were so great I decided a celebration was in order. We drank so much tequila I'll forget the offender's name, if only due to the once in a lifetime hangover to celebrate having done the opposite. I miss forgetting things like this a little. My sickness keeps me from epic moments, good and bad. I have to reach harder to reach the messy, creative, throw your hair to the wind, creative person you thought you were before.
This morning i woke up 26. I'm not sure how i feel about it and I know that is both stupid and screams of my first world issues with my pricey therapist who I see every other week and almost definitely has a PCC membership. The sad this is I do have this therapist. She is a wonderful woman who makes me feel normal for around 120 minute a week. She's trying to convince me to accept a lot and forgive a lot more. To let go and find joy without control or planning. As I mentioned; its every other week and my jealousy of her suspected PCC shift might inevitably ruin our relationship. (Seriously- have you ever seen how KNOWLEDGEABLE their people are? Their produce man talked to me about the merits of dry roasted kale versus hemp for a full ten minutes. Thats know-how right there.) But in any case, I'm 26 now and on my way to old and much closer to dying than I ought to be and I wish I had more days. I feel like I'm not quite bright enough to keep up with whats going on in my world. I waste many of my days doing nothing at all; something that felt luxurious and romantic when I knew I had a whole damn lot of them but now it feels tinny and wasteful. It is hard for me that this is the only 100% honest piece of writing I do. Not that I'm prolific. But of the many words that spill from me: from my mouth, my fingers, my music: this insight is always honest. Honesty is inconvenient and often humbling.
I love my family for everything they do. My parents dedicate more that another job's worth of time to my care, always with a patience that is so infinite its uncalled for the number of times their aid goes without mention or without thanks. My siblings for always worrying, always with the best intentions at the bottom, and always willing to to forgive me when I lose my temper with their impossible tendency to do whatever is currently driving me crazy. My Aunt and Grandparents for visiting to hear the same stores of my same boring life but laugh and comment and applaud my little wins at any case. While my organs may be laced through and through with disease, I was blessed enough to be surrounded on the outsides, by a group of some of the most loving, generous, brave, kind people I have been lucky enough to have in my life. I love you. For those of you not listed here, you know who you are. You've been my hands, right and left; and pushed me up out of me seat, sometimes even if I didn't want it. Thank you for you calls, your cards, your visits, or even just your words or embraces at just the right moment. Together guys we will beat this. Thank you to #teamallison
Tuesday, May 26, 2015
Saturday, May 23, 2015
Stars filling the darkness
To say I woke up early this morning would be an understatement. It happened at around 4 when I was seized out of sleep by a searing aching pain in my right shoulder that snaked down to my side and curled up in my belly before stretching up to squeeze itself in just below my sternum. I wondered if it was pill time. These days I'm always wondering if it's pill time.
As I had suspected: all predictions of the second procedure being a dream compared to the first were a load of evil communist lies. Knowing what I was going in to face dipped me in fear from tip to toes as they wheeled me into the examination room. They prepped me as an anesthesiologist sent me off to some twilight world caught halfway between this world and the next, (whatever that may be). Luckily the sterile draping on my hips blocked the view of the camera making its way through my innards to one of the arterial entrances of my liver- I don't think any amount of half-way sedation could've kept me calm through viewing that little show.
Waking up from sedation is truly a combination of life's most terrifying disconcerting circumstances one could imagine. You awake in blinding confusing pain while your eyes dart about trying to gain their bearings; who is a friend, who's a threat (or really rather who do I dislike). As you make your assessment you take a deep breath and dive head first into a deep chilly resentment of your situation. The "why me, oh god why me, oh how i hate this" begins on repeat, sinks its rusty claws under you ribs and wiggles its talons, tapping them to the beat of its constant refrain. The coughs when they come are rattly and bounce around inside my right shoulder like they're looking for somewhere to roost; angry, molting birds.
The days that follow go oddly well with bursts of awful. As more days pass, the good moments dwindle and the awful inches its way into more and more of your activities until you find its mostly all awful. I sit to write, to let out the feelings, try and help the world understand. As the laptop sits warm on my lap and my fingers rub at the keys it seems impossible to explain it all. All anyone wants to know is how it feels, what I need, what will make me feel better. But as I sit to try and give the world what they want, my neck sinks down deep into my shoulders and my head inches back, eyes drooping. And then I think how ludicrous it is that I can't sleep at night, that I stare at my ceiling and wonder where Morpheus has gone with his soft sleepy sand. But as my head drops back, sleep comes creeping up behind and I'm gone before I can answer these questions that hang over my head. Answers I owe to the ones I love.
I look for activities; landmarks of movement, of achievement to show myself I'm still whole somehow, to keep the pall of fading away to nothing away off from around my neck. It itches like a silly fear you're afraid to admit to. The days I can make a batch of cookies or have coffee with a friend I am elated: I'm not dead or dying or so afraid all the time. Seems a ridiculous level of gravity to lay upon a batch of chocolate chips or a double ristretto vanilla latte. But I have known days when neither were imaginable; I am grateful for small achievements, for the little reminders. June is creeping closer and more than anything I want to be healed well enough to go to Italy. I hear the Tuscan breeze and the smells of field ripe tomatoes. I will eat my way through that country, god willing, even if it kills me. My eyes will see the fields roll on green and gold, I will stand on streets older than upon my feet have tread before. When those molting cawing birds roost in my chest and preen their black pinfeathers I dream of Italy and how an Italian moon must be more beautiful than that opal orb that looks down on me from my green Kent valley. I close my eyes and let my mind fly free of their roost. I let my head fall back, let my regrets go, and dream of Italian stars.
As I had suspected: all predictions of the second procedure being a dream compared to the first were a load of evil communist lies. Knowing what I was going in to face dipped me in fear from tip to toes as they wheeled me into the examination room. They prepped me as an anesthesiologist sent me off to some twilight world caught halfway between this world and the next, (whatever that may be). Luckily the sterile draping on my hips blocked the view of the camera making its way through my innards to one of the arterial entrances of my liver- I don't think any amount of half-way sedation could've kept me calm through viewing that little show.
Waking up from sedation is truly a combination of life's most terrifying disconcerting circumstances one could imagine. You awake in blinding confusing pain while your eyes dart about trying to gain their bearings; who is a friend, who's a threat (or really rather who do I dislike). As you make your assessment you take a deep breath and dive head first into a deep chilly resentment of your situation. The "why me, oh god why me, oh how i hate this" begins on repeat, sinks its rusty claws under you ribs and wiggles its talons, tapping them to the beat of its constant refrain. The coughs when they come are rattly and bounce around inside my right shoulder like they're looking for somewhere to roost; angry, molting birds.
The days that follow go oddly well with bursts of awful. As more days pass, the good moments dwindle and the awful inches its way into more and more of your activities until you find its mostly all awful. I sit to write, to let out the feelings, try and help the world understand. As the laptop sits warm on my lap and my fingers rub at the keys it seems impossible to explain it all. All anyone wants to know is how it feels, what I need, what will make me feel better. But as I sit to try and give the world what they want, my neck sinks down deep into my shoulders and my head inches back, eyes drooping. And then I think how ludicrous it is that I can't sleep at night, that I stare at my ceiling and wonder where Morpheus has gone with his soft sleepy sand. But as my head drops back, sleep comes creeping up behind and I'm gone before I can answer these questions that hang over my head. Answers I owe to the ones I love.
I look for activities; landmarks of movement, of achievement to show myself I'm still whole somehow, to keep the pall of fading away to nothing away off from around my neck. It itches like a silly fear you're afraid to admit to. The days I can make a batch of cookies or have coffee with a friend I am elated: I'm not dead or dying or so afraid all the time. Seems a ridiculous level of gravity to lay upon a batch of chocolate chips or a double ristretto vanilla latte. But I have known days when neither were imaginable; I am grateful for small achievements, for the little reminders. June is creeping closer and more than anything I want to be healed well enough to go to Italy. I hear the Tuscan breeze and the smells of field ripe tomatoes. I will eat my way through that country, god willing, even if it kills me. My eyes will see the fields roll on green and gold, I will stand on streets older than upon my feet have tread before. When those molting cawing birds roost in my chest and preen their black pinfeathers I dream of Italy and how an Italian moon must be more beautiful than that opal orb that looks down on me from my green Kent valley. I close my eyes and let my mind fly free of their roost. I let my head fall back, let my regrets go, and dream of Italian stars.
Tuesday, May 12, 2015
Guess who's coming for dinner?
There are a million things i still want to do. I want to close on a home of my very own; something gray or maybe blue with a little porch and an open kitchen. I want to find love again, feel the joy of revolving your world around the axis of another person who sees you as their moon and stars. I want to write a million poems, until the words spill out like flowers and gemstones, frogs and slimy toads like the maidens from the fairy tale, blessed and cursed for their kindness or cruelty by the beautiful fairy, disguised as the old woman at the fountain. I want to travel the world and feel the fabrics of a thousand cultures against my skin. I want to see the colors and smell a different way of living. I want to discover new fruits and vegetables and spices, new ways of cooking food and sharing experiences.
But more than this I want to bring this warmth back to my family's table. Growing up, the family dinner table was a sacred space: no one missed dinner and there were no phone call interruptions (or later cell phones) rude behavior, or fighting. It was a place for the celebration of perfect test scores and promotions at work. It was the judgment bench from which there was no hiding. The day's bad behaviors were measured and weighed, punishments and admonishments doled out as necessary. No matter the day you had had a work or school, once your rear end hit the seat at the table you could be assured of two things: 1) that you would perform your due diligence in consuming whatever was put in front of you, and 2) there would be no escaping a detailed explanation, interrogation, and sometimes even confession as deemed necessary by the law of the land.
As we all grew older, this tradition became harder to upkeep. As we graduated and left the house we left our empty chairs behind; their cream pads muted reminders of our absences that nicely complimented the green and mint trim in the kitchen. Dinners were taken less frequently together and now my little brother eats things like plain lunch meat that he likes to cut shapes out of. None of which is normal. I want to make dinner with everyone around the table. I want to roast a chicken perhaps, sauté some faro or roost some vegetables. I want to make batches of cookies and airy cakes as tall as dreams and watch their eyes light up when they try the first bite. I want to be remembered for all the extra love in those sweets.
But these days I get one shot a day to do something worthwhile. One shot to grocery shop, or handle a hold phone tree with verizon. I always push for two activities, sometimes I get really crazy and go for 3 but it is difficult trying to fit so much into my days. I have the same number of hours as everyone else (24 in case you were wondering) but my ability to to anything with them is rather limited down to somewhere around about 4 hours of active time. Just like a happily developing toddler. Of course again, like any good preschooler, I need to separate my activities with prodigious napping, or I tend to become very grumpy and lose my focus and patience at a rather alarming rate.
My natural impulse of reaching for the pantry during these testing times, whether it be the mounds bar or the tortilla chips, has led to a lifetime subscription to a generally unhealthy relationship with food. I eat emotionally or sometimes not at all; driven by the twisted logic that excessive eating will fill whatever sadness or anger void I am working to shovel through. I avoid eating all together under high stress situations, I struggle with my body image and being able to control what goes into my body and when, is an important (if entirely unhealthy) control mechanism.
Now, in these times, it is even more important that I grow past these issues to purse a healthier more sustainable lifestyle. Some changes are easy to make: I detest most fast food and almost never eat it, so taking it off the list is an easy one. I am working on dialing down the dairy and non-organic gluten products. I am also trying to up my vegetable consumption. While I adore fruits in all shapes, sizes, colors, and most flavors (here's looking at you papaya), I have to be clever about hiding my green things in unobtrusive places, like smoothies, to ensure I get my full servings. If I were truly dedicated, I would force some raw veggies into my diet: culprits like broccoli, carrots, peppers, tomatoes, and kale pack huge vitamin punches in their raw forms with the added bonus of being chalk full of cancer-fighting antioxidants.
It is these small battles that I fight during these long days where nothing ever seems to get better. When I win, they are poor little victories, faintly deserving of a golf clap. When I lose it means my bad choices make for even longer nights curled up around my malfunctioning liver as my insides try to work through a few too many ounces of brie or something equally irresponsible. Needless to say, not deserving of the golf clap. Today has been a special third kind of day which is neither a success nor failure but merely a struggle to get through till the sun goes down. It feels as if it ought to be about midnight and meanwhile the grey watery sunshine is still bearing down bleakly through the french doors; "the day isn't over" it whispers "it's never going to be over". So instead I write. I feel like this disease has taken a huge part of who I am, carved it out like an ice cream scoop and dropped it on the hot pavement to melt and run off in a sticky mess, sure to ruin someone's shoes another day. The fatigue has taken my sense of humor and quick wit, these days I mostly feel blunt and irritable- no time for jokes, no room for funny observations. My brain, once the cerebral equivalent to a fantastic spanish colonial style hacienda, chalk full of inlaid tile and guest bedrooms, is now filled with cobwebs and the pieces of broken furniture. The extra rooms, once vacant and left beautifully decorated, white linen shades blowing in the open wind, are full of cobwebs and the strange monstrous children of drug fueled dreams. They whisper warnings and words of encouragement to me as I wander the hallways but I don't have the heart to stop and look, try and understand their twisted words as they warn of the trials still to come. These children of my feverish dreams rub up and down my ribs with their pale fingers in the night, waking me up with icy cold needles up my side. You cannot close the door on these apparitions. They refuse to be ignored and their howling in the night should you try, sends them into a towering fury; before you know it they've broken into your room and hang from your elbows, crying and sucking what little life force you have left within you. When I am afraid that the shadows will never stop their howling and the sun will never again rise, I sing to myself from time to time. It doesn't stop the pain but the sound of my voice takes away the fear, gives me a moment of stillness, almost peace, allowing me to catch my breath.
Once I've caught my breath I can remember the way things used to be; the calm bountiful yard at home, bursting full of flowers, my runs in the sunshine feeling stronger each day, the endless gorgeous horizons of different opportunities just waiting to be played out into an extraordinary life. I desperately want all of that back. There is no one who will promise me any kind of return to normalcy. My bread and butter is "maybe", "no way to tell" and (my favorite) "with any luck", answers that give me absolutely no piece of mind or comfort but also make it very difficult for me to sue anyone (which I've come to believe is the primary goal of all medical institutions in this day and age). The only comfort (and it is a meagre one) is that they do generally apply sympathy pain pills following their failure to deliver useful information. After haven taken so many of them, the pain pills don't do too much to scratch the surface but at least they tamp down my natural awareness enough that their failure to treat me like a functioning adult is slightly less galling.
It is finally 8:00PM. This is exciting to me because it means its only an hour away from 9. 9PM is a decently acceptable hour at which to go to bed. Anything earlier makes me feel dangerously close to a senior citizen and gives me inexplicable urges to make under informed complaints about medicare, illegal immigration, and fox news anchors. 9 o'clock however means that I could be a highly contributing member of society (i'm not) that needs excessive sleep to keep her massive brain going. This is a nice though and I try to run with it as these days nice thoughts just don't roll through on the daily express like they used to. But in spite of cubes in my mind wrapped up in pain and self-doubt and hate, a sort of life or death tetris race to the top, I try to keep my chin up. I have the best support team any fighter could ask for, my parents and best friends keep me smiling, elicit a laugh or two, force-feed me my favorite foods, and keep me alive by threatening to kill me should I die. They love me unconditionally and aren't afraid by the handfuls of hair falling off my head or the horrible shrieking fits i have from time to time, terrified and angry with life and with death. Someday, when this is all through, I will have them with me still and find a way to repay the kind of divine goodness that saves a person's life. Someday, when all this has passed I'll be looking out or i'll be looking down with a serene smile, at peace at last, forever grateful, and forever in love with those who held me up when I had reached the end of my strength. I love you all. Alla famiglia!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PS: thank you from the bottom of my heart from myself and my entire family to all of those who gave generously to our gofundme campaign. Just today we reached our fundraising goal which will make it possible to fund some of my current treatment and certainly much of the continuing systemic chemotherapy moving forward as we investigate participating in clinical trials and newer treatments that are in many cases covered only partially or not at all by health insurance. Your contributions will make a life-saving difference and I cannot thank you enough for the generosity and sincere good wishes and support from all those who have followed the blog or reached out through this difficult process. We love you and thank you! Further info on the fundraising campaign can be found here: http://www.gofundme.com/teamallison
much love,
Allison
But more than this I want to bring this warmth back to my family's table. Growing up, the family dinner table was a sacred space: no one missed dinner and there were no phone call interruptions (or later cell phones) rude behavior, or fighting. It was a place for the celebration of perfect test scores and promotions at work. It was the judgment bench from which there was no hiding. The day's bad behaviors were measured and weighed, punishments and admonishments doled out as necessary. No matter the day you had had a work or school, once your rear end hit the seat at the table you could be assured of two things: 1) that you would perform your due diligence in consuming whatever was put in front of you, and 2) there would be no escaping a detailed explanation, interrogation, and sometimes even confession as deemed necessary by the law of the land.
As we all grew older, this tradition became harder to upkeep. As we graduated and left the house we left our empty chairs behind; their cream pads muted reminders of our absences that nicely complimented the green and mint trim in the kitchen. Dinners were taken less frequently together and now my little brother eats things like plain lunch meat that he likes to cut shapes out of. None of which is normal. I want to make dinner with everyone around the table. I want to roast a chicken perhaps, sauté some faro or roost some vegetables. I want to make batches of cookies and airy cakes as tall as dreams and watch their eyes light up when they try the first bite. I want to be remembered for all the extra love in those sweets.
But these days I get one shot a day to do something worthwhile. One shot to grocery shop, or handle a hold phone tree with verizon. I always push for two activities, sometimes I get really crazy and go for 3 but it is difficult trying to fit so much into my days. I have the same number of hours as everyone else (24 in case you were wondering) but my ability to to anything with them is rather limited down to somewhere around about 4 hours of active time. Just like a happily developing toddler. Of course again, like any good preschooler, I need to separate my activities with prodigious napping, or I tend to become very grumpy and lose my focus and patience at a rather alarming rate.
My natural impulse of reaching for the pantry during these testing times, whether it be the mounds bar or the tortilla chips, has led to a lifetime subscription to a generally unhealthy relationship with food. I eat emotionally or sometimes not at all; driven by the twisted logic that excessive eating will fill whatever sadness or anger void I am working to shovel through. I avoid eating all together under high stress situations, I struggle with my body image and being able to control what goes into my body and when, is an important (if entirely unhealthy) control mechanism.
Now, in these times, it is even more important that I grow past these issues to purse a healthier more sustainable lifestyle. Some changes are easy to make: I detest most fast food and almost never eat it, so taking it off the list is an easy one. I am working on dialing down the dairy and non-organic gluten products. I am also trying to up my vegetable consumption. While I adore fruits in all shapes, sizes, colors, and most flavors (here's looking at you papaya), I have to be clever about hiding my green things in unobtrusive places, like smoothies, to ensure I get my full servings. If I were truly dedicated, I would force some raw veggies into my diet: culprits like broccoli, carrots, peppers, tomatoes, and kale pack huge vitamin punches in their raw forms with the added bonus of being chalk full of cancer-fighting antioxidants.
It is these small battles that I fight during these long days where nothing ever seems to get better. When I win, they are poor little victories, faintly deserving of a golf clap. When I lose it means my bad choices make for even longer nights curled up around my malfunctioning liver as my insides try to work through a few too many ounces of brie or something equally irresponsible. Needless to say, not deserving of the golf clap. Today has been a special third kind of day which is neither a success nor failure but merely a struggle to get through till the sun goes down. It feels as if it ought to be about midnight and meanwhile the grey watery sunshine is still bearing down bleakly through the french doors; "the day isn't over" it whispers "it's never going to be over". So instead I write. I feel like this disease has taken a huge part of who I am, carved it out like an ice cream scoop and dropped it on the hot pavement to melt and run off in a sticky mess, sure to ruin someone's shoes another day. The fatigue has taken my sense of humor and quick wit, these days I mostly feel blunt and irritable- no time for jokes, no room for funny observations. My brain, once the cerebral equivalent to a fantastic spanish colonial style hacienda, chalk full of inlaid tile and guest bedrooms, is now filled with cobwebs and the pieces of broken furniture. The extra rooms, once vacant and left beautifully decorated, white linen shades blowing in the open wind, are full of cobwebs and the strange monstrous children of drug fueled dreams. They whisper warnings and words of encouragement to me as I wander the hallways but I don't have the heart to stop and look, try and understand their twisted words as they warn of the trials still to come. These children of my feverish dreams rub up and down my ribs with their pale fingers in the night, waking me up with icy cold needles up my side. You cannot close the door on these apparitions. They refuse to be ignored and their howling in the night should you try, sends them into a towering fury; before you know it they've broken into your room and hang from your elbows, crying and sucking what little life force you have left within you. When I am afraid that the shadows will never stop their howling and the sun will never again rise, I sing to myself from time to time. It doesn't stop the pain but the sound of my voice takes away the fear, gives me a moment of stillness, almost peace, allowing me to catch my breath.
Once I've caught my breath I can remember the way things used to be; the calm bountiful yard at home, bursting full of flowers, my runs in the sunshine feeling stronger each day, the endless gorgeous horizons of different opportunities just waiting to be played out into an extraordinary life. I desperately want all of that back. There is no one who will promise me any kind of return to normalcy. My bread and butter is "maybe", "no way to tell" and (my favorite) "with any luck", answers that give me absolutely no piece of mind or comfort but also make it very difficult for me to sue anyone (which I've come to believe is the primary goal of all medical institutions in this day and age). The only comfort (and it is a meagre one) is that they do generally apply sympathy pain pills following their failure to deliver useful information. After haven taken so many of them, the pain pills don't do too much to scratch the surface but at least they tamp down my natural awareness enough that their failure to treat me like a functioning adult is slightly less galling.
It is finally 8:00PM. This is exciting to me because it means its only an hour away from 9. 9PM is a decently acceptable hour at which to go to bed. Anything earlier makes me feel dangerously close to a senior citizen and gives me inexplicable urges to make under informed complaints about medicare, illegal immigration, and fox news anchors. 9 o'clock however means that I could be a highly contributing member of society (i'm not) that needs excessive sleep to keep her massive brain going. This is a nice though and I try to run with it as these days nice thoughts just don't roll through on the daily express like they used to. But in spite of cubes in my mind wrapped up in pain and self-doubt and hate, a sort of life or death tetris race to the top, I try to keep my chin up. I have the best support team any fighter could ask for, my parents and best friends keep me smiling, elicit a laugh or two, force-feed me my favorite foods, and keep me alive by threatening to kill me should I die. They love me unconditionally and aren't afraid by the handfuls of hair falling off my head or the horrible shrieking fits i have from time to time, terrified and angry with life and with death. Someday, when this is all through, I will have them with me still and find a way to repay the kind of divine goodness that saves a person's life. Someday, when all this has passed I'll be looking out or i'll be looking down with a serene smile, at peace at last, forever grateful, and forever in love with those who held me up when I had reached the end of my strength. I love you all. Alla famiglia!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PS: thank you from the bottom of my heart from myself and my entire family to all of those who gave generously to our gofundme campaign. Just today we reached our fundraising goal which will make it possible to fund some of my current treatment and certainly much of the continuing systemic chemotherapy moving forward as we investigate participating in clinical trials and newer treatments that are in many cases covered only partially or not at all by health insurance. Your contributions will make a life-saving difference and I cannot thank you enough for the generosity and sincere good wishes and support from all those who have followed the blog or reached out through this difficult process. We love you and thank you! Further info on the fundraising campaign can be found here: http://www.gofundme.com/teamallison
much love,
Allison
Wednesday, May 6, 2015
The porch swing: a sad song in grey minor
As the weather has begun to turn towards the better for the springtime, my dad has taken the time to hang the porch swing at the end of our wraparound front porch. I love to sit in this swing and rock. The house blocks the majority of any chill wind and the heavy chains and worn oak boards generate their own sort of slow momentum: the thing never comes to a full stop. I could sit in the swing for hours, my hands folded in my lap as I stare out towards the road. From the swing I can see the mailbox and the driveway. I can see the left third of the front yard with the cherry and apple trees. I can see the side yards to the left on the other side of the porch rails with the flower beds and the rows of white lights that run above between the eaves of the roof and the peak of the garage roof across the way that sits beneath my mothers piano studio, a separate two story building.
Much of my life passed me by in those few thousand square feet that I purvey from the porch swing.
I learned to parallell park in-between the same black trash cans at the intersection with the road and rode by bike in endless loops around our two sided driveway. I shot my senior pictures on that wrap around porch. I was barefoot and baby faced with braces and an unfortunate hunch in my shoulders but the deck was freshly painted and shone white and proper against the blaze of the blooming dogwood tree and immaculate green boxwoods.
I sit and I swing and look at the peonies full of fresh buds and admire the first bush with its premature blooms, wilting and dying a premature death. In their haste to bloom they caught yesterday's untimely hail and their fragile bright pink lion's manes are melting like sugar down the dark green stems. Peonies are my favorite flowers and I await their arrival each year with great anticipation. Last year I missed the peonies as they began to bloom just as I was recovering from the worst of my eye surgery, my world was a dark one, far from the sunshine to keep alive the fragile blooms of a flower.
This has the strange effect of recalling older memories when I see the peonies this year, as if I missed them last year, indeed the entire springtime, due to an unplanned trip though a cancerous wormhole. I see the peonies and and am hit with a half hysterical half practical regret that they bloom so early. If only they bloomed in june to july instead of May! If the flowers bloomed through early July I could just stretch the end of the season to put peonies on the wedding tables instead of roses. I remember having thought this though a million times through the spring of 2013. The golden lights that stretch across the roofs from point to point are from the wedding as well. As i swing on the porch swing I can see the long tulle netting floating in the breeze between the lights. The hanging silver stars and the dance floor below. I can see the ghost of the white tents fluttering above the tables with their white linen and silver platters of food. I can smell the flowers and the champagne in the air, still hear the laughter and see the smiles.
I thought it would be impossible to live at home and see winter turn to spring, thought it would break my heart to see spring turn to summer. Our relationship was a volatile one. We slipped early on into a love that was equal parts magnificent and doomed. We were entirely in love and fought epic battles holding us apart economic, cultural, and social lines with the passion of a pair of don quixotes blind to the fruitlessness of our labors. We worked our days and our nights too with dreams in our eyes. We chased our pleasures down roads with dim lights and bright smiles; strong drinks and stronger words as the nights got darker. As our world spun faster each moment of turbulence sent us a bit further off course. Late Summer, a hot day that burned sullenly off to sticky evening heat. One night, one last drink, one last word, a voice yelled "i can't do this anymore" and his hand hit me full across the face.
I left him immediately and autumn became winter as I tried to reconcile who I was, who I believed myself to be, and the vows that I had made to another person in front of all of the souls I most loved and respected. I had decided to pursue my commitment till death did us part in conjunction with marital counseling to help answer the questions that had burned through the beautiful life I believed i had created for myself. It was months later when winter became spring that I learned of my first diagnosis and the problems of the past seemed to melt away. As my mind spun with the idea of losing my eye he stood behind me and held me up as my legs faltered beneath me. When I flew to philadelphia to have the tumor operated on he snuck my favorite chocolates into my luggage with a love note. He never bought gifts and he never wrote love letters. When I returned, having learned of the existence of an entirely new and terrible world of pain and suffering he cared for me, nursed me, held my hand and shook his head with me as I wondered when the pain would ever end, if I would ever recover.
I forgave him. We could have moved on and lived on together. But I recovered. Spring became summer and the operation was a success. My underwhelming oncologist declared me officially in remission at 6 months and my opthamologists marveled at the success of the surgery and slow but steady deterioration of the tumor in my eye. My test results were clear in my major systems and my PET scan was clear. It appeared I had beat cancer. I returned to work and our lives returned to normal. All normal. The fighting began again. The resentments and arguments. Summer became autumn and the things he said when we fought became crueler, more unforgivable. He told me he had never loved me, had pretended through my sickness. I mourned a relationship I knew was dying. As autumn became winter the final flame red leaves blew from their branches and fell to the frozen ground. When he hit me the second time it was with relief that I left him for good.
I returned to my family's home having loved and lost; a hundred years older in less than 730 days. I thought it would be impossible to see those grounds blossom into spring again. I couldn't imagine the ache in my soul to see those flowers explode into summer again; to see the roses and hydrangeas flaunt their extravagant colors against the verdant decadent green of everything.
But now spring has sprung again and the peonies are blooming. The dragons I had imagined facing do not raze my fields with hot tongues of memory but rather set my world ablaze with pain and organ failure. Having experienced both, I can admit that heartbreak is infinitely preferable to chemotherapy. You see heartbreak may make you wish you had never been born but chemotherapy will accomplish the same thing and has the nasty added bonus of no guarantee that it will matter afterwards whether you were born in the first place. At the very least it has little to nothing to do with the outcome anyway.
So this year I look at the peonies bloom and think of how lovely they would've been on the wedding tables . And this does not bring me pain. I hear the ghost of a Frank Sinatra song on the breeze with the laughter of family and friends in the sun under those strings of golden lights. I remember how beautiful I was and how happy. I hope that this treatment is successful and i see the spring become summer. I am not afraid of those beautiful summer evenings anymore and I want to see those beautiful summer flowers. I am hoping for an autumn too. I want to come through all of this a million years wiser and impossible older and braver. I want to learn to look life in the eye without blinking and hold out my arms as it changes without flinching and missing something. When the leaves change this year I don't want to be afraid anymore.
*********************************************************************************
Thank you again to everyone who has taken the opportunity to donate to our gofundme campaign which can be found here http://www.gofundme.com/teamallison
Every little bit helps us in this ongoing fight and we cannot thank you all enough for your outpouring of support prayers and goodwill. Thank you from all of #teamallison
Much of my life passed me by in those few thousand square feet that I purvey from the porch swing.
I learned to parallell park in-between the same black trash cans at the intersection with the road and rode by bike in endless loops around our two sided driveway. I shot my senior pictures on that wrap around porch. I was barefoot and baby faced with braces and an unfortunate hunch in my shoulders but the deck was freshly painted and shone white and proper against the blaze of the blooming dogwood tree and immaculate green boxwoods.
I sit and I swing and look at the peonies full of fresh buds and admire the first bush with its premature blooms, wilting and dying a premature death. In their haste to bloom they caught yesterday's untimely hail and their fragile bright pink lion's manes are melting like sugar down the dark green stems. Peonies are my favorite flowers and I await their arrival each year with great anticipation. Last year I missed the peonies as they began to bloom just as I was recovering from the worst of my eye surgery, my world was a dark one, far from the sunshine to keep alive the fragile blooms of a flower.
This has the strange effect of recalling older memories when I see the peonies this year, as if I missed them last year, indeed the entire springtime, due to an unplanned trip though a cancerous wormhole. I see the peonies and and am hit with a half hysterical half practical regret that they bloom so early. If only they bloomed in june to july instead of May! If the flowers bloomed through early July I could just stretch the end of the season to put peonies on the wedding tables instead of roses. I remember having thought this though a million times through the spring of 2013. The golden lights that stretch across the roofs from point to point are from the wedding as well. As i swing on the porch swing I can see the long tulle netting floating in the breeze between the lights. The hanging silver stars and the dance floor below. I can see the ghost of the white tents fluttering above the tables with their white linen and silver platters of food. I can smell the flowers and the champagne in the air, still hear the laughter and see the smiles.
I thought it would be impossible to live at home and see winter turn to spring, thought it would break my heart to see spring turn to summer. Our relationship was a volatile one. We slipped early on into a love that was equal parts magnificent and doomed. We were entirely in love and fought epic battles holding us apart economic, cultural, and social lines with the passion of a pair of don quixotes blind to the fruitlessness of our labors. We worked our days and our nights too with dreams in our eyes. We chased our pleasures down roads with dim lights and bright smiles; strong drinks and stronger words as the nights got darker. As our world spun faster each moment of turbulence sent us a bit further off course. Late Summer, a hot day that burned sullenly off to sticky evening heat. One night, one last drink, one last word, a voice yelled "i can't do this anymore" and his hand hit me full across the face.
I left him immediately and autumn became winter as I tried to reconcile who I was, who I believed myself to be, and the vows that I had made to another person in front of all of the souls I most loved and respected. I had decided to pursue my commitment till death did us part in conjunction with marital counseling to help answer the questions that had burned through the beautiful life I believed i had created for myself. It was months later when winter became spring that I learned of my first diagnosis and the problems of the past seemed to melt away. As my mind spun with the idea of losing my eye he stood behind me and held me up as my legs faltered beneath me. When I flew to philadelphia to have the tumor operated on he snuck my favorite chocolates into my luggage with a love note. He never bought gifts and he never wrote love letters. When I returned, having learned of the existence of an entirely new and terrible world of pain and suffering he cared for me, nursed me, held my hand and shook his head with me as I wondered when the pain would ever end, if I would ever recover.
I forgave him. We could have moved on and lived on together. But I recovered. Spring became summer and the operation was a success. My underwhelming oncologist declared me officially in remission at 6 months and my opthamologists marveled at the success of the surgery and slow but steady deterioration of the tumor in my eye. My test results were clear in my major systems and my PET scan was clear. It appeared I had beat cancer. I returned to work and our lives returned to normal. All normal. The fighting began again. The resentments and arguments. Summer became autumn and the things he said when we fought became crueler, more unforgivable. He told me he had never loved me, had pretended through my sickness. I mourned a relationship I knew was dying. As autumn became winter the final flame red leaves blew from their branches and fell to the frozen ground. When he hit me the second time it was with relief that I left him for good.
I returned to my family's home having loved and lost; a hundred years older in less than 730 days. I thought it would be impossible to see those grounds blossom into spring again. I couldn't imagine the ache in my soul to see those flowers explode into summer again; to see the roses and hydrangeas flaunt their extravagant colors against the verdant decadent green of everything.
But now spring has sprung again and the peonies are blooming. The dragons I had imagined facing do not raze my fields with hot tongues of memory but rather set my world ablaze with pain and organ failure. Having experienced both, I can admit that heartbreak is infinitely preferable to chemotherapy. You see heartbreak may make you wish you had never been born but chemotherapy will accomplish the same thing and has the nasty added bonus of no guarantee that it will matter afterwards whether you were born in the first place. At the very least it has little to nothing to do with the outcome anyway.
So this year I look at the peonies bloom and think of how lovely they would've been on the wedding tables . And this does not bring me pain. I hear the ghost of a Frank Sinatra song on the breeze with the laughter of family and friends in the sun under those strings of golden lights. I remember how beautiful I was and how happy. I hope that this treatment is successful and i see the spring become summer. I am not afraid of those beautiful summer evenings anymore and I want to see those beautiful summer flowers. I am hoping for an autumn too. I want to come through all of this a million years wiser and impossible older and braver. I want to learn to look life in the eye without blinking and hold out my arms as it changes without flinching and missing something. When the leaves change this year I don't want to be afraid anymore.
*********************************************************************************
Thank you again to everyone who has taken the opportunity to donate to our gofundme campaign which can be found here http://www.gofundme.com/teamallison
Every little bit helps us in this ongoing fight and we cannot thank you all enough for your outpouring of support prayers and goodwill. Thank you from all of #teamallison
Wednesday, April 29, 2015
Seattle Cancer Care
My meeting with my new Seattle Cancer Care doctor turned out to be on the lackluster side. We arrived at the office early as requested to run through the necessary registration paperwork and questions. I wonder if there is a socially acceptable phobia of discussing banal personal details with perfectly uninterested strangers. Every new doctor we visit, every new office and reception staff: the script only ever varies slightly. Name, date of birth please, social security, addresses ad naseum, education, employment. I feel like I should keep a profile on myself with all the necessary information and answers and just hand it over upon my entrance. This fantasy of course would be quickly dashed; it turns out it is of tantamount importance that this information proceeds as a direct response from my mouth no matter how many times I assure them that I was still born on the 25th of May, 1989. Then comes the health history pages. I like to pretend with myself that they request the names, phone numbers, fax numbers, emails, addresses, specialties, and most recent appointment information from each of my zajillion doctors for my benefit, like some kind of brain game meant to exercise my long term faculties and not actually some infuriating plot to frustrate me to the point of tears. At the end of the day they have all of this information already and my writing it down will not stop them from asking me at least 4 separate times for all of the same information as if I might've grown an inch or so since having been asked my height twice in the same five minutes that I was measured.
Our check-in at Seattle Cancer Care was really no more or less painful than I have come to expect from the opening act of the doctor dog and pony show. The nurses were no more or less blandly polite but uninterested at the same time and the receptionists had a rather expectable tang of too busy for your questions yet unfortunately reliant on your answers in order to effect the end of an overall disagreeable experience for both parties. We found some decently comfortable high backed recliners facing a wall of windows with a peekaboo view of lake union. The boats were regal and cool, gliding through those green glass waters with pristine sails. A dusty warm glow of money floated on the warm afternoon air over the boats and beautiful condos of South lake union. We had been warned that the doctor was running late so we settled into the recliners and watched the world bustle outside the window between the sunbeams. 20 minutes later we were called back to the doctors exam room and again warned that the doctor was running late.
It is my humble opinion that doctor's exam rooms are one of the more underrated effective stress environments for human physical and emotional discomfort. A standard exam room consists of 1-2 hard plastic observer chairs, a doctor wheelie stool (or less commonly 3rd chair), and the exam table/bed/chairlette itself. The exam bed can vary from the sloping short bench version to the full hospital setup, longer and more dramatic in its ergonomic design. Exam beds are exquisitely uncomfortable to sit casually upon. They are meant for more dramatic posturing for examination's sake: they do not lend themselves well to the kinds of conversations had regarding results and treatments betweens doctors, patients, and families. Sometimes I opt for an observer chair as these at least promote forward facing casual sitting as well as the added benefit of a back and sometimes even armrests. Inevitably however, this leaves me feeling guilty and uncomfortable as it both dooms someone else to the uncomfortable side hunch on the table and also never fails to throw a doctor or nurse for a loop as they find it odd to address you from the observer's chair. Luckily I opted for this option as we had been warned of further tardiness.
We waited an hour for the doctor in the exam room. Waiting is one of my top 5 most uncomfortable activities. It makes me focus on the pain that starts to build up on my right side as my body weight bears down on the tumors in my liver. It makes me sweat which makes me irritable and further aware of the discomfort of my situation. I don't handle this kind of emotional stress well, particularly not around others. I prefer silence, usually the bitter furious sort, and will sit folded around my sore self, mouth set into an angry deep line, as I pinterest with all the force of a raging fire, mysterious as the dark side of the moon.
When the doctor arrived he was a tall thin gentleman with elegant long limbs like a crane. His accent was polished indian and his smile was warm. He assured us jovially that we would become accustomed to his lateness. Our faces were hard and our eyes didn't laugh at his jokes. Some of the easy bounce slunk off the edges of his footsteps by the time he had fully entered the room. We walked him through our story as we had told it a million times before and felt the room fill up with the anxiety and fear and exhaustion of the disease. He asked me if I understood the gravity of my diagnosis. They always ask me if I understand how serious things are. I always say yes. I wonder what else they expect me to say and what they might do if I were to deviate from the script.
They are hoping that my current round of interventional radiology will be enough to cut off the blood supply to the legions of tumors in my liver, a sort of modern-day medical siege of Vicksburg in two part s. We revamped my battle strategies for pain management, switching from a pain patch to heavier baseline painkillers a few times a day. This change has made the last few days a bit more bearable, a bit more lucid. Hopefully I will continue to improve as I go back in to see the radiologist on Friday to determine the start of the second half of my radiation. I hope I am well enough recovered that I will be left with some remaining liver function. Regardless, I think i'll be clearing my social calendar for the next week or so as I do battle with the diamond backed green dragon that lives in my right side.
If I'm lucky and successful, this will allow my doctor to treat me with some new cocktail of immunotherapy drugs aimed at teaching my body to identify tumor cells as dangers and allowing my immune system to then go about targeting and eventually destroying them. He tells me about a patient that has lived through the 3 year mark following this course which is a marginal improvement from the last set of stories dating back up to 2 years. Thinking about numbers like these is surreal. I cannot wrap my mind around them as facts that could apply in any relevant manner to my life. Hiding my fear as anger, feeding it with my frustration gives me the strength to look my doctors in the eye when they talk to me about death. Somehow standing strong in front of those doctors is enough for me to feel strong about this burden I carry. Holding myself upright and without shedding a tear is my first step towards being stronger than this disease. My upturned face and dry eyes are lines in the sand.
Our check-in at Seattle Cancer Care was really no more or less painful than I have come to expect from the opening act of the doctor dog and pony show. The nurses were no more or less blandly polite but uninterested at the same time and the receptionists had a rather expectable tang of too busy for your questions yet unfortunately reliant on your answers in order to effect the end of an overall disagreeable experience for both parties. We found some decently comfortable high backed recliners facing a wall of windows with a peekaboo view of lake union. The boats were regal and cool, gliding through those green glass waters with pristine sails. A dusty warm glow of money floated on the warm afternoon air over the boats and beautiful condos of South lake union. We had been warned that the doctor was running late so we settled into the recliners and watched the world bustle outside the window between the sunbeams. 20 minutes later we were called back to the doctors exam room and again warned that the doctor was running late.
It is my humble opinion that doctor's exam rooms are one of the more underrated effective stress environments for human physical and emotional discomfort. A standard exam room consists of 1-2 hard plastic observer chairs, a doctor wheelie stool (or less commonly 3rd chair), and the exam table/bed/chairlette itself. The exam bed can vary from the sloping short bench version to the full hospital setup, longer and more dramatic in its ergonomic design. Exam beds are exquisitely uncomfortable to sit casually upon. They are meant for more dramatic posturing for examination's sake: they do not lend themselves well to the kinds of conversations had regarding results and treatments betweens doctors, patients, and families. Sometimes I opt for an observer chair as these at least promote forward facing casual sitting as well as the added benefit of a back and sometimes even armrests. Inevitably however, this leaves me feeling guilty and uncomfortable as it both dooms someone else to the uncomfortable side hunch on the table and also never fails to throw a doctor or nurse for a loop as they find it odd to address you from the observer's chair. Luckily I opted for this option as we had been warned of further tardiness.
We waited an hour for the doctor in the exam room. Waiting is one of my top 5 most uncomfortable activities. It makes me focus on the pain that starts to build up on my right side as my body weight bears down on the tumors in my liver. It makes me sweat which makes me irritable and further aware of the discomfort of my situation. I don't handle this kind of emotional stress well, particularly not around others. I prefer silence, usually the bitter furious sort, and will sit folded around my sore self, mouth set into an angry deep line, as I pinterest with all the force of a raging fire, mysterious as the dark side of the moon.
When the doctor arrived he was a tall thin gentleman with elegant long limbs like a crane. His accent was polished indian and his smile was warm. He assured us jovially that we would become accustomed to his lateness. Our faces were hard and our eyes didn't laugh at his jokes. Some of the easy bounce slunk off the edges of his footsteps by the time he had fully entered the room. We walked him through our story as we had told it a million times before and felt the room fill up with the anxiety and fear and exhaustion of the disease. He asked me if I understood the gravity of my diagnosis. They always ask me if I understand how serious things are. I always say yes. I wonder what else they expect me to say and what they might do if I were to deviate from the script.
They are hoping that my current round of interventional radiology will be enough to cut off the blood supply to the legions of tumors in my liver, a sort of modern-day medical siege of Vicksburg in two part s. We revamped my battle strategies for pain management, switching from a pain patch to heavier baseline painkillers a few times a day. This change has made the last few days a bit more bearable, a bit more lucid. Hopefully I will continue to improve as I go back in to see the radiologist on Friday to determine the start of the second half of my radiation. I hope I am well enough recovered that I will be left with some remaining liver function. Regardless, I think i'll be clearing my social calendar for the next week or so as I do battle with the diamond backed green dragon that lives in my right side.
If I'm lucky and successful, this will allow my doctor to treat me with some new cocktail of immunotherapy drugs aimed at teaching my body to identify tumor cells as dangers and allowing my immune system to then go about targeting and eventually destroying them. He tells me about a patient that has lived through the 3 year mark following this course which is a marginal improvement from the last set of stories dating back up to 2 years. Thinking about numbers like these is surreal. I cannot wrap my mind around them as facts that could apply in any relevant manner to my life. Hiding my fear as anger, feeding it with my frustration gives me the strength to look my doctors in the eye when they talk to me about death. Somehow standing strong in front of those doctors is enough for me to feel strong about this burden I carry. Holding myself upright and without shedding a tear is my first step towards being stronger than this disease. My upturned face and dry eyes are lines in the sand.
Massage Limbo
I would like to create something of my time spent suffering. I want something more to remember this time by than bitter memories of hot flashes and the way the skin peels in my mouth from all the drugs. The pain pills they give me are becoming less effective. I feel a little more myself which is a nice change. More myself but halfway unable to do anything; halfway weakened, halfway beat down. My body is a mess of twitches and spasms. My teeth chew at my lips and my back pulses in long slow aches. The bruises from my IVs are slow to heal and splotchy. They match the shadows under my eyes. Never have I slept more and yet been so tired. Never have i slept less, eyes rolling in the early hours of the morning. I am learning a new kind of sickness. It is a way of being and acknowledging this fact is the first step to accepting the hostile take over of your body as it wastes away; becomes sick and not yours any longer.
I would love to embark on a journey of self discovery: bake something every day, explore some passion and find some purpose. If I don't beat this I want my life to have been fruitful in some meaningful way. But the pain gets in the way. Writing helps. I have always fought my fears by naming them. Describing them. Calling them forth where their power becomes mine. But these are deeper more adult battles and I fear my customary wit will not suffice its usual quick pass through the doors. Once I am inside I will have no answer for the long stares from vacant eyes. It is once you reach this point that bravado fails you. Behind these doors you don't find people who want to ask you questions. Behind these doors "what is your pain at?" is a way of life: people live and breathe on that 1-10, find reserves of strengths, and watch as all that they are fails them in their moment of need while some fish-lipped onlooker goggles at you next to the picture of the tumors like a snowstorm in the trunk of your body. While visitors certainly are the best and boost the spirit in ways unparalleled by non social contact they have to be the right kind; a quintessential goggler can sour the fight to survive like milk in an overly warm stomach. The mouth slightly ajar, the eyes unapologetically wide and wondering while the swirling vapid nothing behind careens a little drunkenly around the still births of undeveloped dreams and dim ideas, tripping in the dark like a late night walk through a cluttered garage. I am very afraid of becoming one of these people. I'm afraid i'll slowly slip into a sad husk of pain, rattling around inside myself as the days become longer and more unbearable.
So I try to fit in activities to remind me of me and kindle that inner spark or madness. We are born with but a little of it and mustn't lose it lest we lose ourselves. I make long mental lists of dried fruits and match them in my head with the antioxidants they provide like vitamin flashcards. I take stock of my reserves and start considering netflix candidates for new shows to watch. This is uninspiring and only vaguely bohemic in an urban outfitters kind of way but it's a start. I make myself a mental note to do better later. Today I go to see a new panel of doctors and it would behoove me to prepare treatment questions for them. I wonder how the interaction will go. I am hoping for a charismatic, take-charge, young doctor that will be bold and outspoken regarding my chances. I want someone with a little steel in his spine who isn't worried that i'll sue him if he can somehow jury-rig my body to stop this self-destruct clock that ticks away in the background like a little emotional terrorist. I'm essentially holding out for a hero till the end of the night. At the end of the day it won't matter, I'll take the time and attention of any qualified doctor willing to stand between me and death.
I keep waiting for the gravity of this situation to hit me. I feel as though I walk around peering up at the sky, forever waiting for the other shoe to drop. Death is a bottomless pool and when you drop your stone over the side you are doomed to be disappointed if you are left waiting to hear the echoing response as it finally finds rest. Death is what I am afraid of. It is too big for me to understand and I cannot control it. But I am ambitious as the most industrious of ants. I know how to break down these problems into smaller pieces and carry them bite by bite to the side of the river where you do not feel the gravity of the entire undertaking but rather the individual arduous journey of each piece, in who's rest you can find peace.
Today I have a massage in the afternoon and I cannot wait for the degree of relief it should afford my aching back and side. I feel as if I live in the lap of luxury as I have been lucky enough to attend three different massages in the last week; those sixty minute intervals are probably the calmest, pain-free moments that I remember of this time. They say that the chemo drug they dosed me with causes memory loss and hazy memory, both of which feel in real time like operating in life from behind a sneeze guard. Everything is mostly visible but also just a touch smeared underneath a plastic film that leaves little bubbles between the screens. The pain pills add a sheen of sweat over the whole equation and leaves you feeling like you're sitting in a diner in linen shorts that stick to your legs and the vinyl seats as the air conditioning breaks down and life slows down 50 years or so. Outside it rains, heavy fat drops that make quick deep mud puddles to soak the unsuspecting shoe. Inside the sweat trickles downs the side of my eyebrow in spite of the late April chill. It makes me want to take a shower, a quick and cold one, but the ache in my side says don't bother.
Thursday, April 23, 2015
Breathe
Thank you to everyone who has donated to the gofundme online campaign to help fund my treatment in fighting this disease. The campaign can be found here http://www.gofundme.com/teamallison and please let me know if you have any questions!
*******************************************************************************
The chemo treatment has reduced my world to a series of static images. Red, still frames of consciousness flip gently through the days as they progress. I live life through long moments in the morning when everything is clear and still and bright. I try to lie just as still as that moment in time in hopes that the slow tide carries away aching white walls of pain that crash against my shores. My energy comes in bursts these days: one moment I am ready to take over the world and the next I rest my head for but a moment and I find i've lost time; my consciousness careens off down some pain-addled rabbit hole and soon all you can see is the drifting trail of bubbles as they rise, pop, and disappear into air.
The main source of my pain is my right side. It starts in high on my hip and deep in my central spine and arches up around my right hip, careful to dip its fingers in between my ribs and hook its claws in deep. When I turn or inhale that fist clenches and the soft core organs beneath protest and spasm in sharp resentment.
When i curl myself up carefully, just so, i can feel some of the muscles relax and the much needed breath and healing begin. I like to spend as much time as I can outside on these days. A breeze reminds me that nothing is constant and movement in my peripheral, the world around me is comforting in that it goes on without me, in spite of my distress. More maddening then the pain, more frightening than the fact that it does not pass, is the unapologetic fact that the suffering does not necessarily demarcate any positive progress. I could be in pain like this indefinitely and it could have no outcome on my end game. Doesn't answer any of my questions, abate any of my fears. I don't know how to make sense of logic like this. The pain frightens me and clouds my judgement.
It isn't fun or entertaining to talk about pain. It makes people uncomfortable, alienates them and drives them away. Talking about pain always implies some unequal circumstances between people; the onlooker cannot truly sympathize with the sufferer and from the dim recesses of those dismal lows the cares and concerns of the well wishers seem to echo as if off the walls of a long forgotten dry well. In these times it is good to have familiar faces to grasp towards as you drift through that long suffering river Styx which bears you half-way alive to a grey twilight at dawn where you stand judgement again before the hordes that lust for blood and life. They bang their swords and roar at the skies. They will have their day in the sun and leave their footprints in blood on the ground. These hordes are the pain. They cannot be stopped. They are fickle and strike without warning or strategy. They promise me nothing.
What I remember most of my first serious cancer surgery is the surprise I felt when I discovered that the surgery was merely the first step of a process that would require to completely readjust my paradigm. Like the chime of a clock, cancer changed the lenses in front of my eyes; a quick, efficient change, no more than a "ding" to denote the passage yet there it was. I felt great strength in sharing this self-awareness with the people that surrounded me, that loved and supported me. I felt I could let them into places inside of me that resonated with truths that could be felt and clasped hands and shoulders from states and cities away. But as I completed my treatment protocol my body grew weak and my condition did not abate. I felt I had discovered a hideous fallacy, somebody's idiot mistake: the surgery was completed, the radiation treatment completed, the implant removed, but the pain had not abated. This made me bitter and reluctant to continue to share. At first my words had come easily, springs of doubt, fountains of regret, mountains of poetry were mine for the waxing. But how was I to share repeated frustration or doubt? How could I ask people to indulge my lists of things I feared would go wrong? I had stood fast through great trial with a fair amount of grace, how to reconcile that person with the trials still ahead, and how to burn at the center of the fire so hot and so fast without changing who I was and burning all that I loved and cared for?
This time around I am sadly more familiar with the bitter taste left in your mouth when part of your life burns away through illness. I know which spots to check for. I wish a were a more still person by nature. My mind always strays to active and stillness is not a native habitat for me. Stillness is important because it brings acceptance in the door with it. I hate the bruises up and down my arms and on my hands. I hate needles really. It is always a passing nuisance to wonder how skilled the flobotamist will be with her poking and I can never quite look at the needle as it passes through my skin, drawing blood beneath. The port they gave me for the chemo left a bruise the size and shape of an eggplant in the softest part of my upper thigh. It is royally, unapologetically purple and is tender to the touch. The whole area feels sore and there are deep cords of pain that run underneath the superficial pass of purple flesh. Sometimes these cords ache and draw me back and forth against my own bones as I seek to inhale through the spasms until they pass. Sometimes they are drawn tight and I gasp to turn to the side or sit up; they have no give and are stiffer than corduroy.
I had a massage today and highly enjoyed the experience: I had not worked with her before at Pearson/Pollard Chiropractic but was as communicative as possible regarding the tenderness in my right side and back, my obvious difficulty laying myself flat on her table gave her an acute picture of the gravity of the situation. She used hot stones to a wonderfully soothing effect to in-essence press the pains out of my lower back and flank. Once my back had loosened a bit I felt some measure of relief and she gave the affected area a rubdown that fully incorporated the warmth and healing of the stones followed by a gentler hand massage that made it possible to rise from the table several minutes thereafter, unassisted.
I have an ever aggregating appreciation for the power of human touch in healing. In my darkest moments, it is a forehead massage, not a powerful painkiller, that makes all the difference where it counts. Perhaps this is why massage appeals so much to me. Even now i can feel long thin knives sticking just between my ribs on the right side. They are the thinnest of needles but I can feel their metal edges cutting into me. Massage reminds me to keep breathing anyway. It is a third option. Not a yes, not a no, a third option. Can't make it stop, can't make it go, but breathe anyway while that hand rubs beneath bringing just a little healing, just a little love.
I think about what I will do for the rest of the day for tomorrow or the next and it terrifies me. I don't have plans. Today's plan is to make it to tonight. I have some visitors coming at 6, they'll bring some food; people and food tend to be events in my life right now. But I have no lasting plans and certainly no comitments because who knows? In 2 hours I could be over the moon crazy or set the world on fire. I could live or die, make a million different decisions, and change my life five times over by tomorrow.
But I won't.
I want to shake a fist at the world because it seems like the classy thing to do. I want to roll down the window of my vintage limousine and tip the driver to hold the car still while I yell "goddamn you all to hell" at the gentlemen and baby dolls of broadway: those lost, champagne-dampened wanderers of F Scott Fitzgerald dreams that all just need a little love.
But it would be lost on them.
So instead you just take a breath instead. This is a good place to start. If you look around your mind's eye you can focus that intention if only for just this inhale. Somewhere good. Somewhere deep and decent. If you can build these roots, keep hydrated and eat your prunes you've got a shot at sanity in this post pill-addled fever dream. Like the Anna Nalick song "Can you help me unravel my latest mistake, I don't love him, winter just wasn't my season"
And Breathe. Just Breathe.
It's cliche. and tired and worn thin around the edges like some vocal velveteen rabbit. But the familiar threadbare folds feel right and heal somehow like the memory of an old forgotten blessing.
Rain beats down in a sodden springtime homage to weather. I spend many of my passing moments on the rocking chair on our porch, listening to that rain as it beats down against the protective eaves of the house. But there is something comforting about the drum of the water against the roof as I write warm inside. A million moments touch a million lives as those raindrops fall and as my little world continues to turn here. My steady breath says "not yet" and the water runs in paths like tear tracks down the glass in the windowpane. Tomorrow the sun will rise again and it will bring struggle. Each sunrise sheds light on the pre-dawn still pain that stirs deep in the bones after the night has flown its bounds. But it all passes. If you just breathe.
*******************************************************************************
The chemo treatment has reduced my world to a series of static images. Red, still frames of consciousness flip gently through the days as they progress. I live life through long moments in the morning when everything is clear and still and bright. I try to lie just as still as that moment in time in hopes that the slow tide carries away aching white walls of pain that crash against my shores. My energy comes in bursts these days: one moment I am ready to take over the world and the next I rest my head for but a moment and I find i've lost time; my consciousness careens off down some pain-addled rabbit hole and soon all you can see is the drifting trail of bubbles as they rise, pop, and disappear into air.
The main source of my pain is my right side. It starts in high on my hip and deep in my central spine and arches up around my right hip, careful to dip its fingers in between my ribs and hook its claws in deep. When I turn or inhale that fist clenches and the soft core organs beneath protest and spasm in sharp resentment.
When i curl myself up carefully, just so, i can feel some of the muscles relax and the much needed breath and healing begin. I like to spend as much time as I can outside on these days. A breeze reminds me that nothing is constant and movement in my peripheral, the world around me is comforting in that it goes on without me, in spite of my distress. More maddening then the pain, more frightening than the fact that it does not pass, is the unapologetic fact that the suffering does not necessarily demarcate any positive progress. I could be in pain like this indefinitely and it could have no outcome on my end game. Doesn't answer any of my questions, abate any of my fears. I don't know how to make sense of logic like this. The pain frightens me and clouds my judgement.
It isn't fun or entertaining to talk about pain. It makes people uncomfortable, alienates them and drives them away. Talking about pain always implies some unequal circumstances between people; the onlooker cannot truly sympathize with the sufferer and from the dim recesses of those dismal lows the cares and concerns of the well wishers seem to echo as if off the walls of a long forgotten dry well. In these times it is good to have familiar faces to grasp towards as you drift through that long suffering river Styx which bears you half-way alive to a grey twilight at dawn where you stand judgement again before the hordes that lust for blood and life. They bang their swords and roar at the skies. They will have their day in the sun and leave their footprints in blood on the ground. These hordes are the pain. They cannot be stopped. They are fickle and strike without warning or strategy. They promise me nothing.
What I remember most of my first serious cancer surgery is the surprise I felt when I discovered that the surgery was merely the first step of a process that would require to completely readjust my paradigm. Like the chime of a clock, cancer changed the lenses in front of my eyes; a quick, efficient change, no more than a "ding" to denote the passage yet there it was. I felt great strength in sharing this self-awareness with the people that surrounded me, that loved and supported me. I felt I could let them into places inside of me that resonated with truths that could be felt and clasped hands and shoulders from states and cities away. But as I completed my treatment protocol my body grew weak and my condition did not abate. I felt I had discovered a hideous fallacy, somebody's idiot mistake: the surgery was completed, the radiation treatment completed, the implant removed, but the pain had not abated. This made me bitter and reluctant to continue to share. At first my words had come easily, springs of doubt, fountains of regret, mountains of poetry were mine for the waxing. But how was I to share repeated frustration or doubt? How could I ask people to indulge my lists of things I feared would go wrong? I had stood fast through great trial with a fair amount of grace, how to reconcile that person with the trials still ahead, and how to burn at the center of the fire so hot and so fast without changing who I was and burning all that I loved and cared for?
This time around I am sadly more familiar with the bitter taste left in your mouth when part of your life burns away through illness. I know which spots to check for. I wish a were a more still person by nature. My mind always strays to active and stillness is not a native habitat for me. Stillness is important because it brings acceptance in the door with it. I hate the bruises up and down my arms and on my hands. I hate needles really. It is always a passing nuisance to wonder how skilled the flobotamist will be with her poking and I can never quite look at the needle as it passes through my skin, drawing blood beneath. The port they gave me for the chemo left a bruise the size and shape of an eggplant in the softest part of my upper thigh. It is royally, unapologetically purple and is tender to the touch. The whole area feels sore and there are deep cords of pain that run underneath the superficial pass of purple flesh. Sometimes these cords ache and draw me back and forth against my own bones as I seek to inhale through the spasms until they pass. Sometimes they are drawn tight and I gasp to turn to the side or sit up; they have no give and are stiffer than corduroy.
I had a massage today and highly enjoyed the experience: I had not worked with her before at Pearson/Pollard Chiropractic but was as communicative as possible regarding the tenderness in my right side and back, my obvious difficulty laying myself flat on her table gave her an acute picture of the gravity of the situation. She used hot stones to a wonderfully soothing effect to in-essence press the pains out of my lower back and flank. Once my back had loosened a bit I felt some measure of relief and she gave the affected area a rubdown that fully incorporated the warmth and healing of the stones followed by a gentler hand massage that made it possible to rise from the table several minutes thereafter, unassisted.
I have an ever aggregating appreciation for the power of human touch in healing. In my darkest moments, it is a forehead massage, not a powerful painkiller, that makes all the difference where it counts. Perhaps this is why massage appeals so much to me. Even now i can feel long thin knives sticking just between my ribs on the right side. They are the thinnest of needles but I can feel their metal edges cutting into me. Massage reminds me to keep breathing anyway. It is a third option. Not a yes, not a no, a third option. Can't make it stop, can't make it go, but breathe anyway while that hand rubs beneath bringing just a little healing, just a little love.
I think about what I will do for the rest of the day for tomorrow or the next and it terrifies me. I don't have plans. Today's plan is to make it to tonight. I have some visitors coming at 6, they'll bring some food; people and food tend to be events in my life right now. But I have no lasting plans and certainly no comitments because who knows? In 2 hours I could be over the moon crazy or set the world on fire. I could live or die, make a million different decisions, and change my life five times over by tomorrow.
But I won't.
I want to shake a fist at the world because it seems like the classy thing to do. I want to roll down the window of my vintage limousine and tip the driver to hold the car still while I yell "goddamn you all to hell" at the gentlemen and baby dolls of broadway: those lost, champagne-dampened wanderers of F Scott Fitzgerald dreams that all just need a little love.
But it would be lost on them.
So instead you just take a breath instead. This is a good place to start. If you look around your mind's eye you can focus that intention if only for just this inhale. Somewhere good. Somewhere deep and decent. If you can build these roots, keep hydrated and eat your prunes you've got a shot at sanity in this post pill-addled fever dream. Like the Anna Nalick song "Can you help me unravel my latest mistake, I don't love him, winter just wasn't my season"
And Breathe. Just Breathe.
It's cliche. and tired and worn thin around the edges like some vocal velveteen rabbit. But the familiar threadbare folds feel right and heal somehow like the memory of an old forgotten blessing.
Rain beats down in a sodden springtime homage to weather. I spend many of my passing moments on the rocking chair on our porch, listening to that rain as it beats down against the protective eaves of the house. But there is something comforting about the drum of the water against the roof as I write warm inside. A million moments touch a million lives as those raindrops fall and as my little world continues to turn here. My steady breath says "not yet" and the water runs in paths like tear tracks down the glass in the windowpane. Tomorrow the sun will rise again and it will bring struggle. Each sunrise sheds light on the pre-dawn still pain that stirs deep in the bones after the night has flown its bounds. But it all passes. If you just breathe.
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