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.
Wednesday, July 1, 2015
Monday, June 22, 2015
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
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
Sunday, June 7, 2015
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.
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.
Monday, June 1, 2015
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.
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.
Tuesday, May 26, 2015
#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
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
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!
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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
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