you just might get what you need (part II)

The next four days were a slow blurry nightmare. Auburn general like many hospitals has addressed its budget issues by forcing out its registered nurses in favor of less qualified medical professional assistants. For the patient, me, this meant I would see my nurse only to administer my IV meds. My vitals, checkups, and concerns were attended to largely by CNAs many of whom spoke little english or simply never returned with the items we needed. I slept fitfully from the pain meds, I would wake in sheet soaked with sweat and we would wait sometimes hours for the assistant to return with fresh ones which we changed ourselves. I was a mess of tubes with IVs in both arms and on occasion someone would misstep and tread on a line, yanking one of those needles out of my arms. Concerned with the clot in my lung, my doctors wanted blood samples every four hours. I had been pricked so often I would start to cry when I saw them coming; my veins were full of scabs and it usually took 2 to 3 attempts to make it in for a good draw.

My oncologist finally came to visit me and explained that the best thing for me was a series of injections of a drug called lovinox, beginning with two a day in the hospital and the remainder to be self administered in the belly once a day for 60 days. I shook my head and held tears back, my breath escalating as I started to panic. I told him there had to be another way, another treatment, and that under no uncertain terms would I be self administering injections. I have, from a young age, been deathly afraid of needles. I had come to terms with them to the best of my ability through the course of my illness, accepting them as a necessary evil to be dealt with, but the trauma of my most recent hospital experience had left me panicky and hysterical at the thought of injections, blood draws, and biopsies.

The oncologist left, unable to convince me and in his place a hospitalist, Dr. Wahlid Behnawa, returned a few hours later with a much different message. I was sleeping when he arrived and the loud, angry tone of his voice woke me. I squinted at the door, I didn't have my glasses. He looked short and dark with a beard and mustache, I couldn't really tell with my bad eye sight. He started in on me immediately and demanded to know why I refused to take the injections. He told me I was wasting everyone's time, including my own and asked my why I didn't just go home to die if I refused the recommendation off my doctors. I had to take the injections, he continued, there was no other treatment and i should feel lucky that I had that option available to me. Shocked as I was by this tirade I managed to rally and told him under no uncertain terms could he speak to me so, that beyond merely unprofessional what he was telling me was unethical and that he was bullying me. I threatened to report him for his behavior and asked him to leave the room. Furious, he advanced a few steps into the room and managed to spit out a response, so angry he missed a few words. He told me he was going to report me for refusing treatment and being hostile. He told me I was being contentious and had been bullying all of the nurses and CNAs, that they had all complained of my treatment , that he would have me removed from the hospital and refused treatment. With this last threat he finally spun on his heel and left the room, leaving me shocked and in tears. My mother was equally astounded by his treatment and had been left at a loss for words. It had been sudden and deeply unnecessarily aggressive.

I desperately wanted to leave the hospital. The most recent run in with the hospitalist had left me shaken  and afraid. I wanted to go home, away from all the tubes, and needles, and horrible uncaring people. Unfortunately, if you leave a hospital once admitted you are refusing care. Should you refuse care the hospital reports this to you insurance which then refuses to pay the multi thousand dollar bill associated with an ER visit and hospital stay. As I refused to see Dr. Behnawa again a nurse negotiated a compromise. If I agreed to take 3-5 "bridge" shots of lovinox, the Doctors would agree to releases me providing I then undertook a regimen of warfarin, a blood thinning drug, for a 90 day stretch. With little other option I took the deal and shuddered my way through the first shot in my stomach, dulled by the morphine drip in my arm. When they finally snapped out the IV needles and removed all the tubes and lines I wanted to leap from the bed to the wheelchair; instead my parents helped pull me upright and held me as I tried to make it out of bed and limp the few steps to the chair. They wheeled me to the car and soon I was home. I hauled myself into bed and curled on my side. I had never been so grateful to be home.

My stay at the hospital combined with the damage done by the blood clot set me back nearly two weeks. I was weak and mostly unable to walk for longer than a moment or two, stand for a moment or two. There was still pain when I took a deep breath and I was always tired. I was concerned for my trip, afraid I would miss out on the majority of the experience while napping away the exhaustion that dogged me. I looked doubtfully at my calendar and wondered if I would be able to recover in time. Then that week I got the first of two phone calls that would render these concerns irrelevant. The first was my interventional radiologist. Her voice was quieter than usual, more hesitant. She told me that regrettably the procedures had not been as successful as we had hoped. She pointed out that things hadn't gotten worse but admitted that they had seen some additional growth in tumors they had hoped to eradicate completely. She apologized, softly, and then the line went dead.

I was shocked. I went about my business in a sort of blur. I told my parents, deadpan, and saw their faces drop. I struggled to wrap my mind around it. How could it have failed? I had been so sick for so long. What had all the pain been for if it had failed? I didn't have answers for these questions so i stayed where I was, head buried in that fog and went about my limited daily activity. The next day we reported at 1PM sharp to the warfarin clinic where they pricked my finger to determine the thinness of my blood. They told me I had reached therapeutic level (the thinness desired by the doctor) and I called both of my oncologists to give them the good news. The call came a few hours later. While the doctor was glad the blood level had reached therapeutic he was calling to inform me that at this present time he  could not advise that it was safe for me to travel. Rather he was calling to inform me that my Italy trip was off. Between the threat of another blood clot somewhere above the atlantic and the necessity to get me going on a new treatment in light of the failure of my TACE treatments there was just really no time to fit in the dream that had kept me going through seizures, and chronic vomiting, through the never-ending abdominal pain and hospital stays.

This news broke me. I hit rock bottom and for days had no desire to see, hear, or interact with anyone or do anything. I sat alone in my dark room and death sat in the corner, waiting, always waiting. I didn't mind him there: he didn't ask questions and he didn't want to help. In those few days I cried all of the tears I had saved up through the past year and a half of fear and uncertainty. I cried an ocean, built of river of bitter tears for a dream that was all I had left of a life and a future. The sun shone outside and the flowers were magnificent. I sat alone in a gold green paradise and wondered if I'd ever see another summer. My loved ones orbited around me, unsure what to say or do; I was fragile as glass. Their patient love and gentle attention found its way to me through cracks in those dark walls so that I could see that sun shining outside, if only a glimpse.

You can't always get what you want.

Yesterday I started a new treatment. My doctor says immunotherapy is the way of the future and thinks that this drug, yurevoy, is our one best chance at systemic success in eradicating my cancer.

But if you try sometimes, you just might get what you need.

you just might get what you need (part I)

An ancient philosopher once said: "You can't always get what you want"

You know how the rest goes. Three weeks ago I had reached an awkward stage of cancer I hadn't quite seen coming. I was feeling stronger, I went on walks- each day longer, and held my head higher. I had lost that hollow look that goes with extreme sickness and visitors expecting to see me sallow and wheel chair bound exclaimed "you look so…good!" maybe almost a little disappointed in general lack of myopia. My doctor visits tended towards the positive and boring and I looked forward with glowing eyes to the rolling, rosemary scented hills of Tuscany that beckoned around the corner, complete with my very own air conditioned villa. Heaven. I would be surrounded by my best friends in the middle of the world's greatest cheese and salumi tradition, renting a house up the street from a pasticceria; steps up the road from the medieval walls of the home of opera's greatest composer Giaccamo Puccini. There I would leave behind the evil dust of this sickness and live la dolce vita in the Italian sunshine. Down a few pounds from my sickness i'd wear my favorite sundresses, stroll the piazzas, eat gelato without a care in the world. It was getting hard to be depressed with life, with this dream so near my worries and problems were little ones, I could almost see the turn up ahead, the right turn back towards normal.

Then one day, breakfast didn't agree with me. I threw up violently all morning. I lay around exhausted all afternoon sore and somehow still vaguely sick. It happened the next day too. And the next. I couldn't keep food down the entire week. I was weak and sharp cramps wracked my left side, under my ribs while my traitorous cancerous liver ached on the other side. I'd clutch my sides in a crazy bear hug when I threw up but it didn't stop the convulsions.

Meanwhile, the deadline for my social security and medicare applications was two days away. I had let it sit, dealing with the sickness all weekend and had almost learned to live with it, blocking off my mornings for violent illness and trying to fit it what little activity I had energy for in the evenings. On the last day, my aunt took me to the copy shop with my piles of documents identifying who I was 5 ways from sunday, explanations of transactions on my bank statements, pages upon pages proving I was certified broke, unemployed, sick as a dog, on my last legs, and desperately in need of the good charity of good old uncle sam, please and thank you all in triplicates for the three different offices that would then allow themselves a full 90 days to review my eligibility for aid. We mailed it all off in manila envelopes and headed home. I was exhausted and sore, I hugged myself around the waist, holding my innards close as we drove home.

When we arrived i took my folder of originals and headed inside. I had made it 5 or so steps inside the house when a searing yellow bolt of pain hit me out of the blue underneath the left ribs. It took my breath away and it didn't come back. I gasped shallowly through a pain that refused to quit; it had taken up residence on my left side and intended to stay. I panted in panic and whimpered, my aunt and my parents conferred worriedly, they decided it was gas bubbles, trapped from the immovable dry tract that was my lower GI, immobilized by days, weeks, months of pills and not enough laxatives. They told me to breathe, that it would soon pass and I closed my eyes and tried to squeeze the air in past the pain, to breathe past the pain. Anna had promised to make the long trek out to visit and loyally insisted on keeping our date even though I called and offered her a rain check in light of how badly I was feeling. I waited for her with that same shallow breath, wondering when the pain would pass.

She arrived and we tried various distractions, watched some TV, talked and laughed but nothing could detract from that fire under my ribs. It seemed to be getting worse; no pressure would relieve the stabbing pain and I could only get my words out 2 or 3 at a time. I breathily called over my mother and told her it was time: I was giving up and going to the ER. The drive was excruciating. Every bump and turn rocked my world, I couldn't remember having been in so much pain and remaining conscious before. Stars danced in front of my working eye and even through the blur of my ruined right eye from the oxygen deprivation- I couldn't get enough air past that pain. By the time we arrived I thought I just might die. They asked me my name and birthdate and it took me three breaths to get the words out. The sent me straight into triage. The nurse asked me my symptoms calmly and I begged for an IV and pain meds. She was a little prim in her response as she hooked me up to the blood pressure cuff but she trailed off when she clipped the oxygen counter to my finger, I was down in the 74 range unable to bring in enough oxygen to breath properly. They sank an IV line in me quickly then a second in the other arm. As afraid as I am of those large gauge needles with their sharp "clicks" I offered up my elbows readily and within the next five minutes the nurse had returned and flushed my IV before injecting a shot of dellotid (and then a few more of the same) bringing a blessed relief at long last.

They sent me through x-rays and ct scans before bringing me back to tell me I had a large pulmonary embolism, a blood clot, in my left lung which had caused all the pain and trouble breathing. They checked me in for in-patient care that night and turned me into a bed a few floors up where I lay propped up in bed full of tubes and beeping machines. My nurse, a tall blonde lady, came and gave me my pills for the evening before another hit of pain killers through the IV. The medicine shot through my veins in a warm whoosh and brought with it a welcome creeping fatigue that sank into a deep desperate sleep.

to be continued

and life goes on

I cannot resist finishing the long and probably unnecessary narrative of the cake decorating class:

As per usual I procrastinated in investigating details on my class until 48 hours prior to its actual start. I could blame it on the pain pills and a general lack of awareness regarding the days of the week and dates, but even without the mind-addling doses of painkillers I most likely would've left it off until the last minute. When I did conduct my investigation I found a long list of supplies required on the JoAnne fabrics website advertising my Wilton: Buttercream Basics class (I know, everyone's dream activity). This was both exciting and daunting, namely because in my inability to drive under the influence of medication I have regressed to a needy 15 year old needing rides everywhere.

My dad was generous enough to take me the afternoon of the first class down to the kent JoAnne fabrics where we would be returning later that evening in the pursuit of all things frosting. We strolled through the cakery aisles and I blanched at a few of the prices. $13 for a spatula was a little cost prohibitive in my book, particularly considering that I am a proud possessor of amazon prime- and who doesn't love 99 cent pricing and free shipping? Thinking I might perhaps put off my complete purchase in favor of the online marketplace I inquired whether or not I would need 100% of my supply list on the eve of the first class (which I fully expected to be half introduction, name games, and review of the class). This inspired a flurried chain of questions from stocking peon to stationary lady to a harried shift lead who informed me that I would need each and every supply in my first dip into cake decorating. Her eyes darted around in a way that didn't inspire much confidence but her frown made me think I better pony up and buy the $13 spatula. We ended up finding everything, down to the pearl dust and $40 later I was ready for my class. Back home, I dumped out the carefully organized contents of the perfect sized tote bag and carefully repacked it with all the supplies for what I was sure would be the best class ever.

Luckily I also happen to be on the edge of obsessive compulsive in these things because I went back to check to ensure I wasn't missing any supplies. As I didn't have the site saved I googled it up and happened upon an entirely different supplies list for the same class, this one from the wilton website itself. My stomach quickly dropped down to my knees. This list included things like baked unfrosted cupcakes. I had just enough time to back a batch but I quickly called up the Joanne Fabrics folks to confirm before i got into the business of throwing around flour and butter. Again my inquiry set up a flurry among the ladies of the green apron. They reminded me of little birds on a line, all taking flight in a panic whenever anyone passed below or at the first hint of breeze. My little birds left me on hold for a  very long time before the eldest sounding of the pigeons picked up the line to inform me that the cake class had been cancelled due to lack of registration. They had nobody signed up at all, she informed me, and furthermore no one there had even HEARD of registering online for a class in her store. I immediately went through the roof. I icily recounted to her the tale of my adventures searching for answers in her store no more than two hours prior. I asked her why her employee had lied to me earlier and insisted I buy her expensive spatulas. She put me back on hold. At that point I could've lost my temper entirely but managed to keep it together as she apologized and managed to let out a breath when she promised to refund all the unnecessary supplies.

Once the anger had passed, disappointment took its place. I had mentally invested quite a bit of meaning and impetus in the silly class. It had become my symbol for moving forward, my re-introduction to the world and I had built it up as such so I felt silly. Like so many other things in life it hadn't worked out as I planned, leaving me to wonder "what now?". It made me want to sigh and ask "why me?". Unfortunately I've learned that there aren't very good answers to this question and no one much likes hearing it. So I returned my expensive spatulas and turned my eye to a new inspiration for impetus.

 I have been walking daily and perhaps this is my new inspiration. I am training, walking a little farther or perhaps a little faster, in hopes that I won't be left too far behind in Italy. Lucca, our primary destination only allows so many cars within its walls and its inhabitants predominantly walk or bicycle about their days. I know in our time there we will be exploring hither and thither within its walls and out where our beautiful little rented house sits, 300 metres from the old medieval walls sheltering a historical center dating back hundreds and hundreds of years ago. I hope that by pounding the pavement on this side of the atlantic when we reach our little sunlit tuscan paradise I will be able to keep up with the group as we wander the city. I am lucky enough to have my beautiful cousin Marisa coming along with me to help keep an eye on me. She will be my company for those days that my aches and pains catch up with me (I hope they will be very few) and keep me close to home. The good news is our lovely house has an equally lovely kitchen and is right across the street from a good market and various specialty shops including  a butcher and pasticcieria (pastry shop) meaning even my resting days can be spent in the vigorous pursuit of all things good and beautiful and Italian- and therefore delicious. I still mourn the loss of my pastry practice, and on tuesday nights I feel a little urge to throw a pinch of flour over my shoulder in memory of the buttercream basics class. But just like my larger "what nows" I have found a way to move on; to adapt and move on to something new. Because at the end of the day the sun still rises on your what nows and life goes on- its only a question of whether you jump on and go along for the ride regardless.

Roses and baby steps

The time has come to try to rebuild a life. I am more and more determined to be stronger each day and while I am greatly limited I want very badly some feeling of normalcy and routine past my oxycodone every 4 hours.  My version of building this new life is admittedly scaled down to an event or so a day. There's no getting crazy up in this house. I've signed up for a cake decorating class "buttercream basics" and am excited to perfect my 45 and 90 degree wrist angle when piping a buttercream buttercup. You all think this is the comedic relief piece but frosting flowers are deadly serious stuff. It begins on Tuesday and I've already found reason to complain about it due to the extensive list of "supplies" required for the class. This makes me want to whine for two reasons: 1) extensive=expensive, especially at JoAnne Fabrics. and 2) it makes me feel like a 4th grader with a class supplies list which brings up painfully repressed awkward childhood memories.

Regardless however, Tuesday my buttercream dreams begin. I love to bake, cakes being my particular favorite and working to hone a skill doing something I love I hope will make me feel a little more like the person I had come to believe I had created. This sickness has taken my independence in many ways; I depend almost exclusively on my family to transport me anywhere I need to go and provide me with anything I need. The chronic pain and the drugs have dulled my wits and sucked the joy from my soul, like a tiny dementor has taken up residence in my chest. It may be a small thing, but piping the best scallop in the class or accomplishing a perfectly smooth finish on my cake feels like waving my spatula like a wand and banishing that darkness, allowing me to see me in the mirror again.

My second project has been turning my attention towards my Italy trip which grows ever nearer. We have made the decision to amend our original itinerary due to its ambition: we had planned to see Rome, Tuscany, and Naples, before returning to Rome to enjoy a last few days. Since I am exceedingly less mobile now than I was when we came up  with this plan we have decided to scale down our ambitions dramatically and instead spend an extended period of time in beautiful Tuscany, first in the countryside outside of Florence and then enjoying the comforts of our own rented house in Lucca, birthplace of Italy's greatest opera composer, author of the music that runs through my blood, Giacomo Puccini. Lucca is hosting an italian music festival to which we have tickets. John Legend is playing and as we are all rabid fans it seemed a most sublime setting for a fantastic musician playing in the hallowed halls of the musical greats who came before him. It also doesn't hurt that Lucca is also known for its fantastic local cheese and salumi!

Meanwhile, while I try to keep my head spinning around on its axis, I am still far from the recovery I had hoped for. My energy comes and goes and just when I'm sure I'm quit of one painful side effect or another, it comes roaring back and knocks me back down again. My days go smoother when I take naps, which I detest as they are horrid wastes of time. I don't quite have the activities to fill up that time anyway but regardless, I resent the loss of daylight per force of habit. I hope with my little steps and frosted roses to inch my way back to needing and using all of my daylight.

#teamallison

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

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.

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!

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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

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.

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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

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.

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.

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!

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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 first treatment

On Tuesday they gave me chemo. Since my liver is ragingly infected with tumors they hit it with one of two waves. First to the right side addressing on of the primary blood supplies and then, once I’m recovered, in the left, to go in and address the other half. This is a very aggressive treatment that leaves me feeling rather worse for wear in the meantime; when I stand I buckle slightly on my right side and wonder at which point my soreness will cause be to clutch my side and fall back, I never seem to be quite ready for the long spasmy stretches of pain the accompany these breakdowns. The good news is that my advanced treatment has also rather simplified many of the priorities in my life on the short horizon; I worry conspicuously less regarding my life plan and much more towards my short-term survival goals.

Although I am sore and quite considerably less active that a week ago I feel measurably positive regarding this week’s activities; namely that I participated in any. I feel moderately inclined to continue doing things as well which I take to be encouraging, though life has not seized my hand for a frenzied romp into the unknown I’ll settle for a stroll through the early strains of a sunny Sunday afternoon particularly well shot through with long breaks for beauty naps and thinking breaks. I tire very quickly these days, perhaps due to the sickness, perhaps I just take myself too seriously, but regardless, the beautiful still moments where I can catch my breath and peer into life around me I catch myself watching and wondering, finding the time to look around and inquire, to wonder and appreciate. I believe that I am truly lucky in that my wonderful family allows me to most fully experience this time to its fullest. They have held me up limb by limb and carried me through this process unfailingly. As the true seriousness of my condition has become apparent from passing to serious to threatening and finally even stretching into a reaching unknown wrongness I have had to come to increasing terms with the fact that things might not be okay this time. While this kind of thinking limits many of your horizons it also takes a certain amount of pressure off of your psyche, when you have to accept less it comes with a bit more grace.

           

I hope that this doesn’t kill me. I am not familiar with feeling like my life is soon to be over; while I’m not nor have I ever been enamored of the idea of growing old, it is equally strange to think I might not exist sometime soon, that I won’t live to bear a family of my own or see my friends grow old. I want to think that my young age, my fiery personality, my stubborn tenacity, and my will to win will carry me through this fight but the fear lingers like the clammy sweats that have plagued me since the chemo: maybe things have changed. Maybe this will beat me.

            

In the meantime I try to recount my blessings.  I remember my youth and the rarity of my case and hope it makes me eligible for case studies or experimental treatments that might change my final answer. We are not meant to accept the certainty of our own deaths as natural and at 25 such a thing seems inconceivable. The progression from sick, to in-treatment, to dying is a surreal one that shies away from logical check-ins along rational roads. When I open my eyes in the morning, I wake to pain that flares its fingers underneath my right ribcage. It grabs the edge and twists as I sit up, reminding me that all is not well. With each inhale or turn to the side it digs a bit deeper into my flank like a deep breath I can’t quite catch. The slow progress, positive or negative through my treatment, makes it bearable.  While I don’t have leaps and bounds to draw strength from, I can breathe through the recovery pains, breathe through the spasms until they stretch and pass. As the days roll on I am hoping to build a resistance, build up a fight to the drugs and the pain as the stakes get higher.

The trouble with epilogues

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The trouble with epilogues is that they imply that anything ever ends. We carry our experiences through life like glasses with colored lenses. They’re bent and battered from the hits we’ve taken. Every ending, every change tints a piece or so till they’re more like stained glass windows than glasses. We hook them over our noses and each heartbreak, every lesson we’ve learned colors what we see depending on the angle of the glance as we happen to pass upon the idea in question. We look out across the tangle of human lives and opposing desires and use our experiences, our endings to judge the best course of action. Old scars are like road maps; they remind us of older mistakes. We trace our fingers against them and they whisper warnings.  Nothing ever ends.

As March rolled around again this year it seemed as if I looked back across the past 12 months as an enormous expanse of time and change. I had lost my eye, lost my faith, lost my love and my marriage. I had taken back my life, quit my job, and moved back home with my family.

As 2014 came to a close I stood on the precipice of a new year and dangerously on the edge of loving myself. I lost all of the trappings of my adult life but my little red car and lived unsettled in the center of my own judgment. My discomfort stemmed from my contempt for my own circumstances. The wings of my ego beat against my walls of my reality: “how the mighty have fallen” it cawed. The trappings of my childhood room, my pre-adult life, fit as oddly and tightly as my unfortunate senior prom dress. I felt like a failure. I was afraid I had let down the expectations of anyone who had ever called me bright or promising, I struggled to reconcile my situation with dreams of where I could've been by then. 

But even as I struggled to patch a broken heart with shards of the dreams of my adult life I was gloriously in control of my moments. I found a dizzy, guilty new joy in saying “no” to things. I came to the conclusion that my time was valuable and finite and became more efficient at spending it on people and things that truly mattered to me. I sang in the car with the music turned up to a positively ignorant level and reveled in the irreverence of dancing to taylor swift with a seatbelt on and the windows down, stopped at a red light and invading the personal sound bubbles of my horrified neighbors. It was silly but also profound. I had never before experienced such joy with myself for company, such deep true happiness and satisfaction with the person I was in that moment.

 I wondered if it brought me greater pleasure to barrel through moments like this or if this heady peace was rather the lack of reservation I felt in doing so, an unapologetic cheerful malcontent like none I had ever known.

Armed with this new energy I had taken on the early winter with cautious optimism. I am by nature a rather pessimistic person prone towards excessive risk-analysis so while my brisk frolic forward was more stately than kittenish in nature, I felt I had at least maintained a perfunctory devil-may-care snap in my heel.

February had come and gone in a sort of not worth mentioning fashion and as this fell short of total disaster or wallowing in misery I was willing to chalk it up as a point to the good.

I had decided to take on a second job bartending on the side by March, which challenged my ability to find a work/life balance but also my sheer ability to put up with the mundane, the mediocre, and the infuriatingly halfway done air of the place. It had found itself at the crossroads of a fading, palely enthusiastic regular crowd, and a pricey menu. While the patrons seemed as bemused as the ownership in regards to its bland success it was a curiously prosperous environment. The steady nightly tips almost made up for the steady soul-sucking nature of the place and I had settled into a tiresome routine of putting up with life, my head down and nose rubbing against the grindstone as I prepared for summer.

I meant for summer this year to be a season aflame. I had meant to burst from the green cocoons of spring to gorgeous flower in summer as I unveiled a new more adult me. I would be helping my oldest friend to the alter, and I was going to take the trip of a lifetime to Italy. Sometime in mid February I had picked up the book “Eat Pray Love” and lost myself immediately in the luscious tangle of fate and destiny between its pages. The author’s search for love and color and beauty and food spoke to me on deep levels, resonated in some inner divine core like a bell at the perfect frequency. Europe was calling to me, I could feel the pull of the culture and the language like a huge descending bouquet of flowers and smells waiting to swallow me up in a personal rebirth; I wondered if I would ever come home. While I waited for my time in the sun I went about my daily responsibilities with ever-heavier shoulders, wiping my brow as I stashed the extra cash in a tampon box. I watched, satisfied as a little nest egg grew and all of the extra work seemed more worth it, made me stand a little taller.

I began to notice limitations. I got tired quicker and deeper. The exhaustion rooted deep in my bones and took up residence for days not merely evenings. My overall health seemed run down, long insipid bouts of nausea plagued me in the mornings and I ate always mindful of how I might pay for my choices in the morning or long after I had tried to go to bed.

I visited my doctors frequently but they found nothing wrong with me, I made jokes about my old age and tried to take more vitamins.  I had developed a late in the game affinity for running and found great pleasure outpacing my problems until a series of small injuries grounded me, tried to replace my running with regular yoga practice only to find that my soreness and stiffness followed me even onto my mat.

I had developed a deep side ache, a pulling stabbing sort of pain that flared when I inhaled like a side stitch I couldn’t lose and soon it had become so pronounced I couldn’t straighten my abdomen to lie flat without significant pain. My yearlong treatment anniversary came and went and I asked that they look into my side pain when I went in for my 1 year remission appointment. The ultrasound was predictably both vaguely terrifying and inconclusive. Ultrasounds I was told, show everything and nothing, but certainly cannot be trusted to tell us anything. This made me wonder why we had bothered but I submitted to some serious painkillers to make an MRI possible after my oncologist had discharged me with instructions to return to the ER if my condition didn’t improve.

So I lay in the ER bed and stared at the ceiling, curled up around my sore right side and wondered what it was this time. They didn’t keep me waiting long. A blessedly brusque ER doc looked me square in the eye and told me they’d found malignant lesions all over my liver. Too many to count. It made me think of Beecher’s “no woman cheese”, lined with burnt sugar and jerk spices.  The black veins snake all through the white cheese inseparable and permanent. I have been through enough tough encounters that I no longer question the outlandish observations that pop into my head in these moments. It is best to acknowledge them and allow them to pass. This teaches you acceptance.

The next few days passed in a slow smear of painkillers and dull fear. I couldn’t eat or drink for the drugs in my system, I developed an equal appreciation for the ergonomically designed green vomit cones and one or two particularly wonderful nurse-aids. It is a hallmark, I believe, of having known true illness to be equally attached to an inanimate object that helps one cling to their dignity and at the same time to the very people who see us completely naked of it at our most achingly vulnerable. 

As I waited in the hospital bed in hopes of a return to a solid diet (or any diet really) I saw a disconcertingly large sample population of Auburn General Hospital’s doctors. None of them had anything new to say to me and they were all smoothly, predictably, uninformed uninterested or uninvolved in what was happening to me. When I was finally released 5 days later it was without having completed any of the treatment goals, although I had managed to keep down a half of a smoothie for an all week high of 4 hours and counting. My oncologist, so underwhelming when I had come to him with my concerns at the remission appointment, had not bothered to make rounds to see me himself, I remained in the dark regarding my final diagnosis, chances, or treatment plan. I was checked out of the hospital with a hollow sort of fanfare that heralded really nothing and told to go see an interventional radiologist at UW med the following day for further instructions.

The surgeries pavilion at the University of Washington Medical center has an imposing view. The building is clothed in wall to wall windows overlooking Seattle’s most majestic pines and maples, a spectacular natural background that changes year round putting to shame the priceless murals, exhibitions, and artifacts that sit poised in the corner galleries of the halls themselves, inviting reflection on the mysteries of time and human creativity. It is meant to inspire confidence, the colors and textures of the place ooze tranquility with a shiny saline tang of new money around the edges. I appreciated the dignity of the place and the stillness. Here I could find things that were older than struggle, older than my heartbreak and pain. Here the trees could look over me like just another soul among the pinecones on the forest floor, another star in the sky, another whisper on the breeze. It helps me when I am lost to think of myself as these things.

 For the clean open spaces of the surgeries pavilion the waiting rooms are bright and too full of blond wood accents. The lights are sterile and the air feels harsh and I want some answers. My interventional radiologist is named Dr. Sheron Kwan. She is tiny with delicate features and her hands are birdlike. She looks very much like she would like to sit with me and tell me the truth. Something about the way she comes in tells me she wont be able to. They ask me to sit, awkwardly twisted on examination table, my sister and father in passenger chairs as she perches on a round swizzle stool. There is a nurse with her with ruddy hair and cheeks. She perches on the edge of the trash can and I wonder ludicrously why we are all in an examination room and not some sort of table. It feels like I’m about to get fired in my pajamas. I walk her through my story again, answer all the same questions, and she feels all the same spots.

 She tries to tell me I’m dying but she stops just short and she won’t look me in the eye.

She won’t tell me how much time I have left, she wants me to understand that its about giving me as much time as possible with the circumstances at hand but I am hearing her tell me the game is about stealing time back from wherever my life has gone.

She says the cancer has compromised around 50% of my liver and the primary risk is its spread to my other systems. Malignant melanoma like mine strikes fast and deadly when it chooses to spread.

She tells me that I understand that I have a very serious disease and I am trying to understand what her eyes are adding. I tell her I don’t understand what it means for me. I ask if she means months. I ask if she means years. She doesn’t have an answer.

She tells me I’m like nobody else. I’m rare. I think about steak cooked to 145 degrees. Nobody like me has this disease like me. She can’t tell me what will happen. But her eyes are telling me something different.

They tell me they’re starting chemotherapy on Tuesday. In seven days. She tells me they will put a tube in through my hip and run it into the main blood supply of the liver to best try to shut down the damage the cancer is doing in my liver. This sounds like doing a trench run in a souped up x wing fighter with darth vadar and a pair of tie fighters on my ass as I try to send a pair of proton torpedos down a tiny exaust shoot to destroy a deathstar. Pew pew! Just like shooting womp rats back home.

I want to ask more questions but I don’t know what they are. I want more clarity but she has no more to give. The ruddy nurse is misreading the situation and her cloying sickly conversational asides sicken me like bad tea with too much sweetner. I want to ask her to leave but I stay quiet instead, hating her.

Seven days seems fitting. It seems an appropriate measure of time to grieve and to plan and to implement and prepare. It seems like a final countdown, a slow montage to future prosperity or a solemn memorial to 25 years lived.  But instead the time drags. Painkillers don’t kill pain and killing time doesn’t make it pass faster. The drugs slick things down, formless blobs of thought and twinges and fears all squished into a stream that runs slow and slippery, just quick enough that you cant grab onto your fears with both hands, you feel them brush your fingers like fish as they pass, cold and clammy across your brow. When you clench your fists they squeeze out past you and slip away, returning to bump up against you in the night and leave puddles of cold regret to surprise your toes in the morning when you step out of bed full of purpose. 

I do my best to wrap up my lose ends. I fold my loved ones like papers and tie them in fading ribbons like goodbye embraces then tuck them into my soul to carry with me through the dark. I rage in silent impatience at anything that goes awry or amiss or takes too long. I feel the days surge forward and count my sunsets. I hold on with silent regret to moments I recognize as having passed forever and find moments of clarity in which I know unmistakably that I mean to leave something or someone behind. I let it go and acknowledge its passing. Perhaps it was no longer serving me.

I gather my strength. This battle is one against time and against odds. This is a fight that you do not win by strength alone. The greatest courage is to wake up in the morning and face the sun that rises without thought or concern for your struggle. Bravery is not learning from defeat but rather never looking up long enough to be beaten. Be it pain, be it blood, be it suffering, all things know an eventual end and if you can find this truth, curl up in the bow of this ship it will carry you through the roughest of waters to a place inside you where there is peace.

The trouble with epilogues is that they imply that anything ever ends…

To be continued.