Tonight I played my piano while my daughter sang. It's no revelation that music transports you to different times or places in your life, but tonight it occurred to me that my daughter was, though inadvertently, reconnecting me with a piece of my life that has been missing. It wasn't just the sound of music, it was the feeling of sitting on that piano bench, the very piano bench I have sat on, more times than I can count, for over twenty years. And I realized that it wasn't just about making music, it was that sitting there, i became just a bit more whole. And I think that may simply be because only good things, happy things have happened when I pull out that cherry pew, and sit down to worship our Holy Mother of Melody. I remember practicing while my mother was in the kitchen cooking. Every now and again, it occurred to me that the sounds of chopping or blending had stopped, and my mother was standing near by, silently watching me. I had played something, something that she valued enough to stop preparing the meal, to take a minute out of (what I am certain must have been) an incredibly busy day, just to hear me plodding through Beethoven. And I really never, until I became a mama, understood why she did that. I wasn't a musical prodigy or anything. What I believe now, is that she saw me as I saw myself at that moment- performing at Carnegie Hall, in front of an audience of thousands, with roses covering the stage floor. It wouldn't have mattered if I was playing Chopsticks, all my mom heard and saw was my sheer joy.
Tonight, while accompanying my Ella, I was transported back to that stage, though this time it was even better, as I shared the stage with my beautiful baby. I could do no wrong! Sure, I could misread a note or slip up on the chorus or crescendo when I was supposed to decrescendo, but it wouldn't matter. Because sitting there, just playing a piece of music so my daughter could sing, there were no mistakes. It was only good rolling off that "golden tongue." I guess I should sit there more often...
Sunday, December 29, 2013
Thursday, September 19, 2013
A Prayer from an Alcoholic
A prayer from an Alcoholic:
We all know the infamous words, "God, grant me the serenity..." anyone who has battled addiction or loves someone who is an addict knows that serenity is a long shot. We hope for just plain calmness. Collected ness. Non chaos. To actually achieve "serenity" would be heavenly! "To accept the things I cannot change..." Again, ideally yes. It would be wonderful to have the ability to just let it all go, to truly detach, to let them do whatever it is they do because really, there is nothing you can do to prevent it. But when you love someone, and that someone is hurting themselves, aren't we automatically inclined to try to stop them? When our children are little, we cover outlets and lock cabinets. We put harmful chemicals out of reach. We attempt to control the environment because we don't know what antics our sweet little lambs will get into. But to love an adult addict, a person who, like a child lacks the sensibility to not be self destructive, we have to leave them to their own devices because it's something we "cannot change." The outlets have turned into shiny bottles of Tullamore Dew, the cleaning products into white powders. We are supposed to remove the covers, open the locked doors and let our loved one play in traffic. It doesn't make sense and yet it does. Because the adult addict is not a child. And ultimately adults will choose to do as they wish.
But then this presents another contradiction. In any adult relationship, you will find rules. You will find limits, restrictions, compromises. It's essential to how we function as a "we." it takes pliability, yes. In order to remain in this relationship, I have to do the following and not do these other things. This will in turn make my partner happy and making my partner happy makes me happy and that's that. Right? Or, as is the case in most relationships, your partner chooses to just deal with whatever behaviors or choices you make because the other stuff you do that doesn't make them want to stab you repeatedly outweighs all your negative stuff. Thats the compromise. But isn't all of that, however we chose to live with our significant other, a form of restriction? And with an addict, the thing you cannot change being that they're an addict, we try to restrict them in anyway possible to curb their addict behavior. I think about this often because I was/am an addict. Frankly, it didn't take me long to realize this about myself. But, because I was surrounded by either fellow addicts or at the very least, fellow drinkers, I didn't really care. Oneonta, like many small towns, has a population within it that normalizes that sort of behavior. Even celebrates it. One of my favorite phrases that you often hear floating around the Black Oak Tavern is "functioning alcoholic." I still to this day wonder if that's a real thing?! How can you possibly know yourself, get a handle on how you feel, if you are consistently plying yourself with a poison (that's a depressant to boot!)?
One of my many rock bottoms (I believe people have more than one) is really a delightful story. After yet another turmoil filled break up, I "therapized" myself with vodka tonics and Marlboro lights. I was really handling things well, talking it out with friends...Yes, if by talking I mean slurring obscenities when things took a turn for the worst and I fell on the sidewalk and broke my two front teeth. I think what makes matters worse is that it took almost an hour for me (or anyone else) to realize it had happened. Beautiful behavior for a mother right? The next day, filled with shame (and gauze) I researched in patient rehab centers, stoli in hand. It wasn't until after many painful looks in the mirror and painful conversations with my terrified friends and family that I decided to take a chance on myself, see what life would look like not filtered through a rocks glass.
Anyway, it's a long, different story that if anyone really would like to hear please let me know!
In conclusion, I think my prayer would go more like this:
God, please let me be brave today. Please grant me the confidence to try to love myself and others. To dare to take one step toward becoming the best version of myself. To make one honest and healthy decision, no matter how small. And to bless me with at least one true friend at the end of the day.
Saturday, June 15, 2013
My Dad
Being that tomorrow is the day of dads, I am naturally thinking of my very own dad. Anyone that is fortunate enough to know Josh O'Leary (or poppy as he is known in his grandfather-dom), knows that one of my father's crowning attributes is his sense of humor. And I feel very fortunate to have inherited this trait, as it is one of the things I do actually like about myself. Without my dad, I genuinely don't think I would have learned to appreciate the truly funny things that are almost constantly happening around us. But thankfully, I am in tuned to all things humor. One of my fathers (and mine) favorite things to do is to report to one another the excerpts of conversations we overhear from random strangers in public. Naturally, these "overheards" are often in places like Hannaford or Lowes or the Home Depot...So, for instance, my father will call me and relay something we both find hysterical taken out of context (ie "this was totally wigging me out" the girl said to the guy, so the guy replies "yeah but you can't wig out of it" ok maybe you have to be there.)
We also enjoy quoting movies, often at inappropriate times. Many of our favorites include The Royal Tennenbaums or Waiting for Guffman. ("Can we get in your backyard ma'am? We've got a couple of boys back there...)
We have been known to drive my poor mother insane with the ridiculous quotes that fly from our mouths, particularly when she is attempting to have a normal conversation or make some kind of plan.
One of my very favorite memories is when I discovered the kind of humor my father had, and at the same time realized, it too was my own. When Jimmy and I were young, we were of course handed the occasional "tall tale" as an explanation for this or that. Like many of us as parents have been known to do (Ella: "mama, where do babies come from? Me: "we bought you at the Razzle Dazzle... They have an entire selection of quality babies in the back...")
But one of my favorite "yarns" was one that really had no anchor in any of our reality other than to function as funny, at least to my dad. He decided to tell us that he was a ninja. And when asked, by my brother of course, to demonstrate his martial arts, he responded by telling us that he couldn't, because he wasn't a combative ninja, he was the kind of ninja that went around speaking at ninja conventions...amazing.
Even as I write this, i am laughing. Why? What possessed him to tell us this absurdity?!
What I like to believe was that it was just fun. It was humor. It was giving us the opportunity to have this silliness ingrained in our brains and memories. It was a building block in the foundations of our own humor. Something to build off of as we grew. It may sound crazy to some, but I
Am so relieved to have the ability to say something ludicrous to my child, and be rewarded with ringing sound of her laughter and her shining face staring at me, (mommy?! Did you just say that?!?) it is just one of the many gifts given to me by my dad.
With me being sick, I often wonder if my father's humor has protected him. If its his suit of armor when the going has gotten tough. I know I've relied heavily on it, because really how else do you get through something like this?
I have often envisioned the "funny" and laughter around me as a swirly, liquid-like barrier. The not so funny tries to penetrate, but it ends up bouncing right off. It can't get to me in there.
When I begin to contemplate what this must be like for my parents, again, what I've said before, upsetting the natural order- your child going before you, I truly cannot imagine. Because there is such a great difference between parenting a sick child, and parenting itself. You can handle the regular stuff, the messes, the boy/girl troubles, tantrums, missing toys, the first driving license. All of that is outlined in the handbook. But to try to imagine your life, with your child taken from you by a terrible disease, where is the chapter on that one? And that's not so funny.
But another great gift passed down to me by my dad is to live in the here and now. And one of the great things that has come of that is my relationship with my father has strengthened. It is more resolute. I feel like we talk more. And that it's ok if not all those talks are funny. We know our humor is still there, lurking close to the surface, but we can keep it down on the days when I just want curl up and cry, and ask my dad why life has to be this hard? And I know he doesn't have the answers, but it really is wonderful to have that simply, unyeilding support. The support I get from my father everyday.
Dad I am more grateful to you than you will ever know. I am so happy I'm your daughter, and that we have filled our lives together with so much laughter. Thank you for being who you are. I love you with all my heart.
Saturday, May 11, 2013
To My Mom
I often think about writing to my mom. Now this is somewhat comical to me mostly because, for those of you who know my mom and I well, know we talk to each other at least 6 times a day and see each other nearly every day. So it isn’t really necessary for me to write something down as I could easily just articulate everything to her out loud. But, writing isn’t really about necessity is it? We write because we want to. And I think that no matter how often my mother and I verbally communicate, writing carries with it a certain magic. The words that decorate the page can be read as often as one wants, and you can hear the writer’s voice.
I have started many letters to my mom and they remained unfinished. I’m not really sure why that is. Is it because we talk so often? Is it because I’m not sure exactly how to write what I am feeling at the time? I think the biggest part is that most of my letters are Thank You’s, and some thank you’s are so big, that it is hard to find the right words. So no matter how eloquent I may try to be, I worry that it will be lacking in power. On the other hand, knowing my mom, she would more than likely say she would love and appreciate whatever it is I wrote. So there you are. I am trying again for the umpteenth time on Mother’s Day.
At present, what I want to thank my mother for is so huge, that it presses against my heart with the force of an emotional tidal wave. What we have gone through together is very big. It is so much more than just that I have cancer and that she is a mother to a child with cancer. It is that we have both been forced to contemplate what life would be like without each other. What would happen in the upset of the natural order where the child went before the parent. I know for me, the idea of leaving my mother behind is unbearable. But despite this tremendous difficulty, my mom has found the strength to stay by my side through it all simply because, as she says, “where else would I be?”
How the Hell do you ever say thank you for something like that? Not just for sitting through countless doctor’s appointments and chemotherapy sessions, but for the agony of trying to picture what life would be like without your kid? The prayers every hour on the hour? The Lord knows how many sleepless nights? For mustering the will when you’re too exhausted (both physically and emotionally) to see straight? For smiling through it? For taking care of my daughter when I couldn’t? How do you possibly thank someone for the kind of love that knows no boundary or law, the kind that crushes, without remorse, anything that stands in its way?
So, I guess I will start by just saying thank you. Thank you mom for everything you have given up for me. Every Time you have put something you needed aside to get me something I wanted. For your patience and your forgiveness. For loving me endlessly and unselfishly. For having to think through things once for yourself and then a second time for me. For instilling in me an appreciation for the following: The saints, Joni Mitchell and Carly Simon, Woody Allen movies, meatloaf and mashers, Provincetown (early morning and sunset especially), all things nautical, cold water with lemon, new york in the summer, sauteed veggies, strawberry shortcake, Fleetwood Mac, drives and diet cokes, Art in all forms, Books of all kinds, Pastosa, Christmas trees, good make up, Chanel Number 5, icy cocktails, good long cries and soft tissues, snuggling, hugging, kisses, and sweet dreams. And Thank you for giving me more love than anyone has ever given.
To Ella on Mother's Day
Dear Ella,
There are 18 million reasons why I love being your mom. I wanted to share a few of them with you. Some may surprise you, some may compel you to do your famous eye roll, some ( I hope) will make you smile. All of them are true, and everyday I discover new reasons...
1. Your sweet face. I never imagined I could have a daughter as beautiful as you. You have the most expressive face. Your smile makes me laugh out loud with joy. And, as I have told you, it was one of your very first expressions (one so much like my own) that made me first really connect to motherhood. I looked down at your beautiful face and saw and expression on your countenance that made me say " you must be mine!"
2. Your laugh. Ever since you were a baby you have laughed in color. Deep, rich reds and blues and purples. Your laugh is infectious. You laugh with your whole heart. Your laugh is always friendly and loving. It is the music that fills my soul.
3. Your messy room. Shocked? Are you perhaps, mistrustful on this one? Let me be clear, it is not ok for you to live in filth. You still have to clean your room, obviously. But, I love that you LIVE in your room. I love that your desk is covered in colored pencils and drawings. I love the scraps of paper, fabric and glitter that cover the floor- evidence of some recent project you cooked up. I love the sweet smell on the 19 sweatshirts flung behind your door(because hanging them on the door hook would have been just too much). I love the idea that one day you will walk into your own daughters room and ask "what's that growing in that glass?!"
4. Your curiosity. I love that you understand that the world is so much bigger than you. And I love that you want to learn all about it. Your interest in art and music and fashion and big cities. All of your questions and ideas and plans. Your curiosity feeds your nature, and that nature will lead you to great things.
5. Your voice. The first time I heard that little voice, my heart leapt. You not only laugh in color, you speak and sing in color as well. And even when we argue, and that voice is the last thing I want to hear ( you wee sassafras), there is not one night that has passed since you were born, that your sweet voice hasn't danced through my dreams and I smile at the sound.
6. Your sense of humor. You're really funny! It's awesome! And now that you're older, we laugh at some of the same things. And to be honest, I've always prided myself a bit on my humor, and I'm glad it's one of the things you've inherited. Laugh when things are funny baby girl, it will save you from life's alligators...
7. How we're different. I love your confidence, your self assurance. I struggled (and struggle) with those things so often. You're humble and self aware at the same time, an incredible accomplishment for a girl your age. I am so proud of you.
8. How we're the same. I love that we both love to read, and we both love to learn. I love that music fills our hearts and that we dance instead of walking. I love how we both love with ferocity. I love that we both believe in magic.
9. Your mind. You have a mind of your own. I suppose this is one of the biggest hurdles of parenting a soon to be teenage child. No, you're not allowed to be rude or fresh. You still have to listen to rules. And sometimes the answer to the question really is just " because I said so." But think critically my love. Ask questions! Just because a grown up says it doesn't mean it's so. Unearth the answers with your own tools.
10. What we don't know vs. what we do. This mystery applies to parenting most of all. You and I have been through a lot together. And we're going through a lot. We don't know for sure what the future will bring. We don't know all the answers. But what we do know is that I am better for having been your mother. And the world is a more beautiful place for having you in it. And that gets me through each day.
The bottom line is, being your mom has made my life so much more special, so much more magical than I ever could have imagined. You are my daughter, with a strong body and sound mind and merciful heart. And there is not one single moment in the entire luminous time you have been on this earth, that you haven't been loved.
Thanks baby.
Love,
Mama
There are 18 million reasons why I love being your mom. I wanted to share a few of them with you. Some may surprise you, some may compel you to do your famous eye roll, some ( I hope) will make you smile. All of them are true, and everyday I discover new reasons...
1. Your sweet face. I never imagined I could have a daughter as beautiful as you. You have the most expressive face. Your smile makes me laugh out loud with joy. And, as I have told you, it was one of your very first expressions (one so much like my own) that made me first really connect to motherhood. I looked down at your beautiful face and saw and expression on your countenance that made me say " you must be mine!"
2. Your laugh. Ever since you were a baby you have laughed in color. Deep, rich reds and blues and purples. Your laugh is infectious. You laugh with your whole heart. Your laugh is always friendly and loving. It is the music that fills my soul.
3. Your messy room. Shocked? Are you perhaps, mistrustful on this one? Let me be clear, it is not ok for you to live in filth. You still have to clean your room, obviously. But, I love that you LIVE in your room. I love that your desk is covered in colored pencils and drawings. I love the scraps of paper, fabric and glitter that cover the floor- evidence of some recent project you cooked up. I love the sweet smell on the 19 sweatshirts flung behind your door(because hanging them on the door hook would have been just too much). I love the idea that one day you will walk into your own daughters room and ask "what's that growing in that glass?!"
4. Your curiosity. I love that you understand that the world is so much bigger than you. And I love that you want to learn all about it. Your interest in art and music and fashion and big cities. All of your questions and ideas and plans. Your curiosity feeds your nature, and that nature will lead you to great things.
5. Your voice. The first time I heard that little voice, my heart leapt. You not only laugh in color, you speak and sing in color as well. And even when we argue, and that voice is the last thing I want to hear ( you wee sassafras), there is not one night that has passed since you were born, that your sweet voice hasn't danced through my dreams and I smile at the sound.
6. Your sense of humor. You're really funny! It's awesome! And now that you're older, we laugh at some of the same things. And to be honest, I've always prided myself a bit on my humor, and I'm glad it's one of the things you've inherited. Laugh when things are funny baby girl, it will save you from life's alligators...
7. How we're different. I love your confidence, your self assurance. I struggled (and struggle) with those things so often. You're humble and self aware at the same time, an incredible accomplishment for a girl your age. I am so proud of you.
8. How we're the same. I love that we both love to read, and we both love to learn. I love that music fills our hearts and that we dance instead of walking. I love how we both love with ferocity. I love that we both believe in magic.
9. Your mind. You have a mind of your own. I suppose this is one of the biggest hurdles of parenting a soon to be teenage child. No, you're not allowed to be rude or fresh. You still have to listen to rules. And sometimes the answer to the question really is just " because I said so." But think critically my love. Ask questions! Just because a grown up says it doesn't mean it's so. Unearth the answers with your own tools.
10. What we don't know vs. what we do. This mystery applies to parenting most of all. You and I have been through a lot together. And we're going through a lot. We don't know for sure what the future will bring. We don't know all the answers. But what we do know is that I am better for having been your mother. And the world is a more beautiful place for having you in it. And that gets me through each day.
The bottom line is, being your mom has made my life so much more special, so much more magical than I ever could have imagined. You are my daughter, with a strong body and sound mind and merciful heart. And there is not one single moment in the entire luminous time you have been on this earth, that you haven't been loved.
Thanks baby.
Love,
Mama
Sunday, January 13, 2013
The First Battle
It occurred to me as I was writing earlier this evening, or at least attempting to write, that many people that I care about, also known as the people that I hope read and love whatever this little writing project turns out to be, don’t know my whole story. Now don’t worry, I don’t mean my whole story as in birth to present day. I really mean my whole story as in my battle with the Walking C, and why it has shaped this writing project. This occurred to me largely because one of my favorite friends and trusted critics had the good sense to ask me what the tone of this project is? “What is the message? “ she said. That’s an excellent question, and I feel like a good way to figure out what exactly it is I am trying to impart to my readers, I may need to start at the beginning. Or, as I’d like to look at it, one of the many beginnings...
I had started feeling sick in December of last year. Typical early winter cold and flu stuff. Stuffy head and chest, headaches, general fatigue, yada, yada. Being the warrior woman I am (yeah right) I chalked it up to a flu, took some over the counter stuff, upped my vitamin C intake, and complained to everyone I encountered.
After a few weeks, I had yet to improve. Me, being well, me, my illness had taken on it’s own life at my job at Alex and Ika. We joked about my invalid state, my reluctance to wait on any customers upstairs (I had become short of breath even at the slightest exertion) and the achiness of my back. I began referring to the sections of my back as my “uppers” and “lowers” and demanding my co-workers rub them whenever we had a few dull moments at the restaurant. Despite my discomfort, having a sense of humor made everything much more bearable, and I was optimistic that I would be shipshape in no time.
Unfortunately, I got worse. I began waking up everyday with intense pain in the middle of my back, sometimes coupled with bouts of intense coughing that felt like my head was going to explode. I tried to do housework, but even the pushing of a Swiffer wetjet around the kitchen floor left me gasping for breath. I was miserable. In addition, I had recently obtained a certification to instruct Zumba classes at the Y. I loved teaching and looked forward to my weekly classes. The problem, as you can imagine, was that it is hard to teach an intense workout when you can barely walk into the studio without collapsing. More misery.
Convinced i had pneumonia, I went to the walk in clinic. The practitioner there checked me out, told me I had an upper respiratory infection, informed me my lungs were “clear as a bell,” wrote me a script for amoxicillin and sent me on my way. With an intense feeling of relief and a renewed sense of hope, I filled my prescription, and retired to my couch bed with a fresh cup of tea, confident that I would feel better in 24 hours time.
Alas, no go. Two days later, I still felt horrid. I had started going to a local chiropractor for my back pain, thinking that would help. After each visit, I tried to convince myself that the stabbing pain I felt in my back was improving ever so slightly, and the heaving breaths I took were getting lighter and less, um, heave-like.
I even tried to go back to work. I remember going in one morning for a day shift, beginning the opening duties at the restaurant, and my dear Ika calling me into her office. “Are you really better Monica?” she said. She didn’t want me to worry about my job, and she sent me home, assuring me that when I felt better she would welcome me back with open arms. (I love you Ika.)
It was only a few days later that my life was changed forever...
I had taken to sleeping on the couch. I was convinced it was more comfortable than our bed and I was convinced all my tossing and turning was making it impossible for poor Eric to sleep. Plus, I could watch countless hours of bad TV to distract myself from the excruciating pain and discomfort I was in. It was, in fact, bad TV that led me to the Emergency Department of Fox Hospital that fateful morning. I was watching an episode of The Nanny (I think) and a commercial came on. It was one of those commercials about drugs that had been recalled and how it affected women and gave them heart attacks. And then it outlined the symptoms of heart attacks. I suddenly realized I was having more than half of those symptoms at that very moment and, overcome with panic, I wanted to go to the hospital. It was approximately 5:30 on a cold February morning. I shuffled into our bedroom (shuffling had become my new walk. Anyone who had spent any time with me at that point can tell you that. I had also adopted a new, very attractive way of standing. Sort of a hunchbacked, half way bent over posture. Super attractive). I shook Eric awake, explaining my fears and telling him i was headed to the Fox ER. He sleepily asked if he should get up. Not wanting to wake Ella or force him out of bed on a cold morning, I told him to stay put, that I would call him if I needed, and that I would be back in a few hours.
I got in the car, pulled out my cell, and called my mother. It is a testament to the strength of my relationship with my mother that she was already awake and having one of her “feelings.” She arrived at the emergency room about 20 minutes after I did.
I won’t go into every detail of the visit, because I don’t want to bore you. I will tell you the moment I started to feel that something was amiss. A chest x-ray had been ordered, naturally, and as I left the x-ray area, the technician looked at me and said “um, how long have you been having chest pains?” I looked at her in alarm and said, “It’s not chest pain, its more like a tightness or pressure! Why? Is there something bad? Can you see weirdness? Why are you asking me that?!” Her response was the ever so helpful, I’m not supposed to tell you anything because I'm not a doctor. So you have to wait. Lovely, I thought, thank you ever so much for saying anything at all and leaving me to the lunatic wanderings of my over anxious mind. The irony of course is, the wanderings were not so far off the mark as it turned out.
So, I can’t be certain, but I would imagine that my x-ray weirdness is what led to my chest and pelvis CT scan. That is when mom and I really started to wonder what the hell was going on. Until that point, Mom had been very optimistic, convinced that the good doctors and nurses were just dotting their i’s and crossing their t’s. The suggestion of the CT however, prompted my mother’s concerned but trying to hide it for her kid’s sake face. I was guerneyed off to the CT, brought back about 10 minutes later, and we waited.
What felt like hours later, my ED doctor knocked on the door. His face was appropriately grave as he explained to mom and I that the radiologist who read my scan found cancerous tumor activity in both breasts, nodules in my lungs, and lesions on my liver. He also said that a small tumor was growing in my spine, pressing against the spinal cord and causing my intense back pain. He seemed most concerned about this last piece, as he said that tumors compressing the spinal cord could grow and result in paralysis. His last words before he left the room were “I’m sorry. You can cry if you need to.”
As much as we appreciated his blessing, cry we did not. Mostly, I’m sure, because Mom and I were attempting to process the information we had just received. My mother got on the phone immediately, calling first Eric, then my father,and then my brother. Mark Pawkett was also called to take care of Ella as well as to get filled in of course. The boys were at the hospital in no time, and my ED room became a real party. I know this sounds so bizarre, but the atmosphere in there was almost light hearted. I think we were all trying to stay as upbeat as we could for each other’s sake. And, as it often happens in really tough situations, there was so much to do to distract us, no one really had too much time to think about the intensity of what was happening.
That day, I had an MRI, two ultrasounds, another chest x-ray, two mammograms, and a bilateral biopsy. It was the high-rollers package of the diagnostic world. And I got it right there, at my small town hospital.
At around four o’clock that afternoon we were released and sent to the Fox Care center where the Bassett Cancer Care Institute was housed. There we met with my now oncologist, as well as many nurses and a social worker. I don’t remember too many specifics about that first visit, but I do remember this. The darling man that would become my savior, looked at me with sad eyes and said “I wish you had come to me sooner.” To which I replied, “ Well I’m here now...”
I had started feeling sick in December of last year. Typical early winter cold and flu stuff. Stuffy head and chest, headaches, general fatigue, yada, yada. Being the warrior woman I am (yeah right) I chalked it up to a flu, took some over the counter stuff, upped my vitamin C intake, and complained to everyone I encountered.
After a few weeks, I had yet to improve. Me, being well, me, my illness had taken on it’s own life at my job at Alex and Ika. We joked about my invalid state, my reluctance to wait on any customers upstairs (I had become short of breath even at the slightest exertion) and the achiness of my back. I began referring to the sections of my back as my “uppers” and “lowers” and demanding my co-workers rub them whenever we had a few dull moments at the restaurant. Despite my discomfort, having a sense of humor made everything much more bearable, and I was optimistic that I would be shipshape in no time.
Unfortunately, I got worse. I began waking up everyday with intense pain in the middle of my back, sometimes coupled with bouts of intense coughing that felt like my head was going to explode. I tried to do housework, but even the pushing of a Swiffer wetjet around the kitchen floor left me gasping for breath. I was miserable. In addition, I had recently obtained a certification to instruct Zumba classes at the Y. I loved teaching and looked forward to my weekly classes. The problem, as you can imagine, was that it is hard to teach an intense workout when you can barely walk into the studio without collapsing. More misery.
Convinced i had pneumonia, I went to the walk in clinic. The practitioner there checked me out, told me I had an upper respiratory infection, informed me my lungs were “clear as a bell,” wrote me a script for amoxicillin and sent me on my way. With an intense feeling of relief and a renewed sense of hope, I filled my prescription, and retired to my couch bed with a fresh cup of tea, confident that I would feel better in 24 hours time.
Alas, no go. Two days later, I still felt horrid. I had started going to a local chiropractor for my back pain, thinking that would help. After each visit, I tried to convince myself that the stabbing pain I felt in my back was improving ever so slightly, and the heaving breaths I took were getting lighter and less, um, heave-like.
I even tried to go back to work. I remember going in one morning for a day shift, beginning the opening duties at the restaurant, and my dear Ika calling me into her office. “Are you really better Monica?” she said. She didn’t want me to worry about my job, and she sent me home, assuring me that when I felt better she would welcome me back with open arms. (I love you Ika.)
It was only a few days later that my life was changed forever...
I had taken to sleeping on the couch. I was convinced it was more comfortable than our bed and I was convinced all my tossing and turning was making it impossible for poor Eric to sleep. Plus, I could watch countless hours of bad TV to distract myself from the excruciating pain and discomfort I was in. It was, in fact, bad TV that led me to the Emergency Department of Fox Hospital that fateful morning. I was watching an episode of The Nanny (I think) and a commercial came on. It was one of those commercials about drugs that had been recalled and how it affected women and gave them heart attacks. And then it outlined the symptoms of heart attacks. I suddenly realized I was having more than half of those symptoms at that very moment and, overcome with panic, I wanted to go to the hospital. It was approximately 5:30 on a cold February morning. I shuffled into our bedroom (shuffling had become my new walk. Anyone who had spent any time with me at that point can tell you that. I had also adopted a new, very attractive way of standing. Sort of a hunchbacked, half way bent over posture. Super attractive). I shook Eric awake, explaining my fears and telling him i was headed to the Fox ER. He sleepily asked if he should get up. Not wanting to wake Ella or force him out of bed on a cold morning, I told him to stay put, that I would call him if I needed, and that I would be back in a few hours.
I got in the car, pulled out my cell, and called my mother. It is a testament to the strength of my relationship with my mother that she was already awake and having one of her “feelings.” She arrived at the emergency room about 20 minutes after I did.
I won’t go into every detail of the visit, because I don’t want to bore you. I will tell you the moment I started to feel that something was amiss. A chest x-ray had been ordered, naturally, and as I left the x-ray area, the technician looked at me and said “um, how long have you been having chest pains?” I looked at her in alarm and said, “It’s not chest pain, its more like a tightness or pressure! Why? Is there something bad? Can you see weirdness? Why are you asking me that?!” Her response was the ever so helpful, I’m not supposed to tell you anything because I'm not a doctor. So you have to wait. Lovely, I thought, thank you ever so much for saying anything at all and leaving me to the lunatic wanderings of my over anxious mind. The irony of course is, the wanderings were not so far off the mark as it turned out.
So, I can’t be certain, but I would imagine that my x-ray weirdness is what led to my chest and pelvis CT scan. That is when mom and I really started to wonder what the hell was going on. Until that point, Mom had been very optimistic, convinced that the good doctors and nurses were just dotting their i’s and crossing their t’s. The suggestion of the CT however, prompted my mother’s concerned but trying to hide it for her kid’s sake face. I was guerneyed off to the CT, brought back about 10 minutes later, and we waited.
What felt like hours later, my ED doctor knocked on the door. His face was appropriately grave as he explained to mom and I that the radiologist who read my scan found cancerous tumor activity in both breasts, nodules in my lungs, and lesions on my liver. He also said that a small tumor was growing in my spine, pressing against the spinal cord and causing my intense back pain. He seemed most concerned about this last piece, as he said that tumors compressing the spinal cord could grow and result in paralysis. His last words before he left the room were “I’m sorry. You can cry if you need to.”
As much as we appreciated his blessing, cry we did not. Mostly, I’m sure, because Mom and I were attempting to process the information we had just received. My mother got on the phone immediately, calling first Eric, then my father,and then my brother. Mark Pawkett was also called to take care of Ella as well as to get filled in of course. The boys were at the hospital in no time, and my ED room became a real party. I know this sounds so bizarre, but the atmosphere in there was almost light hearted. I think we were all trying to stay as upbeat as we could for each other’s sake. And, as it often happens in really tough situations, there was so much to do to distract us, no one really had too much time to think about the intensity of what was happening.
That day, I had an MRI, two ultrasounds, another chest x-ray, two mammograms, and a bilateral biopsy. It was the high-rollers package of the diagnostic world. And I got it right there, at my small town hospital.
At around four o’clock that afternoon we were released and sent to the Fox Care center where the Bassett Cancer Care Institute was housed. There we met with my now oncologist, as well as many nurses and a social worker. I don’t remember too many specifics about that first visit, but I do remember this. The darling man that would become my savior, looked at me with sad eyes and said “I wish you had come to me sooner.” To which I replied, “ Well I’m here now...”
Memory Chest
My brother reminded me of a happy memory today. It was of the time we rented the movie The Goonies on VHS tape. I remember the day well. We were with my dad in the family owned video store on Elm Street. I even remember the proprietor, a kindly, brown haired woman, exalting the movie. Saying it was a must see. When Jimmy and I saw the movie case’s cover art, a gang of boisterous preteens with a pirate ship and skull and cross-bones in the background, we were immediately transported to a damp, drippy cave, our pockets filled with pieces of eight, running for our lives. A couple of swashbucklers, yo-hoing their way out of their family room, and onto the open seas. It was clearly a must- see for our adventurous spirits.
In no time, we were clad in our jammies, stuffing our faces with pizza, and ensconced in Spielberg’s world of pirates, treasure and of course, “bullet holes the size of matzo balls.”
This memory is one of the 18,000 happy ones that make up my childhood. I know if I could find a magic way to bottle how great I felt sitting in the family room of my beloved “West Street House,” next to my brother, I would drink a dose daily. It is these memories that make up my past. Many of them helped define the person I have become. And, if I could find a way to bottle them, I would probably give sips out as gifts. Maybe I would pass the bottle to my parents, the grand facilitators of that memory. Maybe I would pass it to Jimmy, as a way of reminding him of when being each other’s siblings was so much less complex, because it was so much less grown up. Or maybe I would pass it to Ella, so she could get a fun glimpse of what I did as a child, and see part of the blue print I have used for her upbringing.
This memory, along with the others (what did I say? 18,000?) make me ache with joy and my eyes burn with tears. They make me laugh out loud. They make me hug myself so tight, They make me sing and dance, I look back upon them with the same tenderness that I feel when I smooth Ella’s hair out of her eyes after she's fallen asleep. They are precious.
How did God, or whomever the divine power is, or simply our own wonderful brains, ever provide us with such a gift as a good memory? How did whatever IT is know that we’d need those snapshots, those landmarks as a way to punctuate our lives? a way to chronicle our pasts, and provide a guide to how we try to design our futures. A good memory has potency, power. It can get us through the roughest of times, pull us out of the darkest places. It is a gift I am most grateful for.
Naturally, in a situation like mine, this battle with the Walking C, facing mortality, I think often of the past, I think about which memories I would collect, put in little glass jars, and place inside a treasure chest. I wonder if I think more about the past than the future now? I’m not certain I suppose. I know that it is hard for me to think about the future when it is so uncertain. It makes me nervous, anxious and frankly, sometimes, sad. If my memories of the past are all soft, fluffy squares that make up a quilt I can wrap around myself and feel secure, then I suppose thoughts of the future make me feel naked, exposed. Like I am taking a great risk just hoping to achieve whatever it is I am hoping to achieve.
This part can really suck, because another huge lesson you learn when dealing with the Walking C is of course the “Oh shit, what haven’t I experienced that I need to before I check out?!!” The looking into the future for the opportunity to make more memories, more precious glass jars to fill the box. The irony of this is, it’s uncertain for everyone honestly, because there are no guarantees. But it seems much easier for those without a diagnosis to make a five year plan, that's for sure.
A big one for me is travel. I have yet to go to London and wander through the National Library in front of the great works of literature that I have come to know and love so well. In my mind, it goes like this. I am with my Ella and the rest of my family. I see myself kissing the grave of my Katherine of Aragon, my hot tears splashing onto the ground that holds her remains. I see myself standing, breathless, in front of the Tower that held Anne in her last days, hearing her murmur the Lord’s Prayer over and over. I see myself holding my daughter’s hand as we look as the gilded leaves of Sir Gawain and the Green Knight, or Shakespeare’s first folio of anything.
These images are so beautiful to me they make me physically hurt. The desperation to make them happen, the idea that they may not, leave me with an overwhelming sense of fear. The problem with making plans when you feel like you have an expiration date that’s just looming before you is the obvious, which I outlined just now, and then the additional, “It will happen without me, It will occur after I’m gone.” And they will say, “Oh wouldn’t Monica have loved this? Don’t you think Monica would have wanted us to do it this way?”
And I love the “They.” I am touched that They would want to carry out something on my behalf. But that’s what I am supposed to say right? Because selfishly, I don't want any of it to happen without me. I want the opportunity to design this memory, to live in it. To collect the sights, sounds, smells and the feelings that I need to put inside the jar.
So, what am I talking about? I suppose one of the lessons that seems to prevalent to me while dealing with the Walking C is that it’s important to not be afraid to make those plans, to live in the here and now. I know that I am certainly not the first person to come to the realization that its vital to embrace what we have at present, to live day by day and be thankful for the time we have, but I am the first person to discover what that realization has meant to me.
I think it means, that I am going to continue making plans. Dare to dream of the heels of whatever fabulous boots I procure in London sinking into the muddy grass of Highland Cemetery. Dare to imagine the taste of Earl Grey tea and scones with clotted cream that I will enjoy at Claridges. Embrace the image of my daughter’s shining eyes and damp hair and she and I march down cobblestoned streets, pretending we are headed to the Leaky Cauldron. So, I will take the risk and keep planning.
There is lots of room left in the treasure chest, and many, many more glass bottles...
In no time, we were clad in our jammies, stuffing our faces with pizza, and ensconced in Spielberg’s world of pirates, treasure and of course, “bullet holes the size of matzo balls.”
This memory is one of the 18,000 happy ones that make up my childhood. I know if I could find a magic way to bottle how great I felt sitting in the family room of my beloved “West Street House,” next to my brother, I would drink a dose daily. It is these memories that make up my past. Many of them helped define the person I have become. And, if I could find a way to bottle them, I would probably give sips out as gifts. Maybe I would pass the bottle to my parents, the grand facilitators of that memory. Maybe I would pass it to Jimmy, as a way of reminding him of when being each other’s siblings was so much less complex, because it was so much less grown up. Or maybe I would pass it to Ella, so she could get a fun glimpse of what I did as a child, and see part of the blue print I have used for her upbringing.
This memory, along with the others (what did I say? 18,000?) make me ache with joy and my eyes burn with tears. They make me laugh out loud. They make me hug myself so tight, They make me sing and dance, I look back upon them with the same tenderness that I feel when I smooth Ella’s hair out of her eyes after she's fallen asleep. They are precious.
How did God, or whomever the divine power is, or simply our own wonderful brains, ever provide us with such a gift as a good memory? How did whatever IT is know that we’d need those snapshots, those landmarks as a way to punctuate our lives? a way to chronicle our pasts, and provide a guide to how we try to design our futures. A good memory has potency, power. It can get us through the roughest of times, pull us out of the darkest places. It is a gift I am most grateful for.
Naturally, in a situation like mine, this battle with the Walking C, facing mortality, I think often of the past, I think about which memories I would collect, put in little glass jars, and place inside a treasure chest. I wonder if I think more about the past than the future now? I’m not certain I suppose. I know that it is hard for me to think about the future when it is so uncertain. It makes me nervous, anxious and frankly, sometimes, sad. If my memories of the past are all soft, fluffy squares that make up a quilt I can wrap around myself and feel secure, then I suppose thoughts of the future make me feel naked, exposed. Like I am taking a great risk just hoping to achieve whatever it is I am hoping to achieve.
This part can really suck, because another huge lesson you learn when dealing with the Walking C is of course the “Oh shit, what haven’t I experienced that I need to before I check out?!!” The looking into the future for the opportunity to make more memories, more precious glass jars to fill the box. The irony of this is, it’s uncertain for everyone honestly, because there are no guarantees. But it seems much easier for those without a diagnosis to make a five year plan, that's for sure.
A big one for me is travel. I have yet to go to London and wander through the National Library in front of the great works of literature that I have come to know and love so well. In my mind, it goes like this. I am with my Ella and the rest of my family. I see myself kissing the grave of my Katherine of Aragon, my hot tears splashing onto the ground that holds her remains. I see myself standing, breathless, in front of the Tower that held Anne in her last days, hearing her murmur the Lord’s Prayer over and over. I see myself holding my daughter’s hand as we look as the gilded leaves of Sir Gawain and the Green Knight, or Shakespeare’s first folio of anything.
These images are so beautiful to me they make me physically hurt. The desperation to make them happen, the idea that they may not, leave me with an overwhelming sense of fear. The problem with making plans when you feel like you have an expiration date that’s just looming before you is the obvious, which I outlined just now, and then the additional, “It will happen without me, It will occur after I’m gone.” And they will say, “Oh wouldn’t Monica have loved this? Don’t you think Monica would have wanted us to do it this way?”
And I love the “They.” I am touched that They would want to carry out something on my behalf. But that’s what I am supposed to say right? Because selfishly, I don't want any of it to happen without me. I want the opportunity to design this memory, to live in it. To collect the sights, sounds, smells and the feelings that I need to put inside the jar.
So, what am I talking about? I suppose one of the lessons that seems to prevalent to me while dealing with the Walking C is that it’s important to not be afraid to make those plans, to live in the here and now. I know that I am certainly not the first person to come to the realization that its vital to embrace what we have at present, to live day by day and be thankful for the time we have, but I am the first person to discover what that realization has meant to me.
I think it means, that I am going to continue making plans. Dare to dream of the heels of whatever fabulous boots I procure in London sinking into the muddy grass of Highland Cemetery. Dare to imagine the taste of Earl Grey tea and scones with clotted cream that I will enjoy at Claridges. Embrace the image of my daughter’s shining eyes and damp hair and she and I march down cobblestoned streets, pretending we are headed to the Leaky Cauldron. So, I will take the risk and keep planning.
There is lots of room left in the treasure chest, and many, many more glass bottles...
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