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...”
Sunday, January 13, 2013
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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