The life of a 20-something cancer patient: Meg-ol-ogies

The life of a 20-something cancer patient: Meg-ol-ogies: Anyone who knows me, knows I adore elderly people.  I am quite simply fascinated by their vast knowledge and wisdom.  My doctors and nurses ...

Meg-ol-ogies

Anyone who knows me, knows I adore elderly people.  I am quite simply fascinated by their vast knowledge and wisdom.  My doctors and nurses always know that if I'm "MIA", I'm most likely visiting "my" kids, or hanging out with the patients in the 65+ age group.  Each one of them inspire me in so many different ways.  Recently I found out that they take away just as much from conversations as I do.

I have noticed this beautiful journal-type book being passed around the geriatric portion of the cancer center for quite some time now.  Every time I see someone with it I grow evermore curious what the journal contains.  I've never asked about it because the "older crew" is likely to tell anyone and everyone about the comings and goings of days gone by at all treatment areas of the hospital.  The oldies are much more compelled to share their "cancer story" rather than maintain secrecy.  I just figured it was none of my business, so it remained a mystery to me.  Although I would see so many patients, nurses and even a few doctors writing in this journal, I never questioned anyone about it's content.  I knew some would "spill the beans" to me, or my curiosity would get the better of me and I would ask about it.

A few days ago I finally found out what was being written in the journal!  The day started out like any other day.  My first stop, once I arrive at the cancer center, is always the nurses station. They pass along messages from my doctor to me, check me in for my treatment sessions and give my daily itinerary.  This routine stop often supplies me with a healthy dose of gossip from the nurses, as well.  On this particular day, one if the nurses was completely tuned out of our morning "chat session".  She was vigorously writing in the journal.  I had reached my curiosity limit.  I had to ask about this journal, or I was going to burst.  The fellow nurses at my daily "pit stop" looked at each other and questioned one another about whether or not to expose the truth about the mysterious journal.  After a minute of quick discussion, they agreed to tell me the purpose of the journal.  The nurse that was so feverishly writing in the journal looked at me with and ear-to-ear smile and walked towards me with the journal in toe.  She placed it on the counter in front of me and said; "This is the "Book of Meg-ol-ogies".  I was immediately perplexed by the words she uttered.  The other nurses gathered around us and began explaining the stories in the journal.

Apparently, most of the patients and nurses on the geriatric oncology floor were amused by my cancer analogies and decided to write about them in a journal.  They told me that one of my favorite pals, Roxie, was the person that came up with the idea.  Over the past year I have been in Syracuse we have had many, many conversations about every subject under the sun.  Naturally, our cancer struggles are a common discussion topic.  I was completely unaware that I frequently use analogies as a way to relate to each other's battles with cancer.

I was stunned that the journal that has been floating around the treatment facility was started because of the random thought process I use to illustrate and understand my cancer, as well as, the cancers my friends.  One of the nurses looked up from the journal to tell me that many of the patients and staff refer to me as the "Sophia" of our group of "Golden Patients", yet in reverse.  Instead of me being the oldest and wisest one in the group, I am the youngest and most eccentric lady of the bunch.  They have even coined my signature analogy starter.  Instead of "Picture it, Sicily, 19__..." I begin each of my analogies with "Think of it this way..." Roxie and the other's in the geriatric oncology unit took to the journal when they heard one of my analogies, or recycled one of my analogies to express what they are experiencing during their treatment.  They also found my analogies useful when explaining their daily struggles to their family and friends.  Each time someone referenced a Meg-ol-ogy they logged an entry in the journal.

I was floored by what the nurses were telling me.  I was both flattered and embarrassed at the way my cockamamie brain processes medical information.  I was surprised that my fellow cancer fighters even understood my random brain activity, much less absorbed it, comprehend it and/or shared my silly analogies regarding life as a cancer patient.  The nurses noticed my anxiousness and intrigue by the stories of this journal.  Instead of continuing to verbally explain the journal they all stopped talking and told me to take it and read it.  The journal would speak for itself.  I picked up the journal and my itinerary before heading to my treatment room.

I began flipping through the pages of the almost entirely filled journal.  Seeing all the different writing styles and techniques shocked me.  I never knew that so many people took interest in what I had to say.  After getting settled in my room, I plunged into the worn-in leather bound collection of Meg-ol-ogies.

My eyes fluttered left-to-right as I consumed the entries my friends compiled over the past year.  I sat and read the entire journal, cover-to-cover.  As I was reading, some of my fellow patients gathered in my room.  They began reading their entries aloud to me and commenting on each other's entries.  They chimed in on which analogies were their favorite, which ones were funniest, which ones were most relatable, and which ones tugged at the heartstrings the most.  Within minutes most of the unit's patients were in my room. We laughed, we cried, we debated, and we celebrated.  It was an incredible moment in time.  That day was a truly rewarding and unforgettable experience. 

Example analogies:

-Test driving cars to find the perfect fit, or getting a tune-up.  We have to test drive different treatments and medications to see what works best.
-Getting those dud French fries that are either overcooked, crunchy nub fry, or the very undercooked fry that is still kind of cold and has a raw potato taste but has a mushy texture.  You have to weed through the bad to get to the yummy fries.  Just like weeding through bad doctors to find the one who is committed to helping.
-Sticking your tongue to a pole in winter.  You knew it was a bad idea going into it, now it's time to face the consequences.  Our health is the first part that faces the consequences of our actions.
-Mastering filling up the gas tank of your car.  You want to hit on that nice round number, but you don't always get it.  With each fill-up you learn the expertise of pumping gas.  We learn the ways to cope and control our health issues during our cancer battle.  We find out what works best for us.
-Entering a ballad to win the "guess how many" tootsie rolls, etc that are in the jar.  You say you've done the calculations to get the closest number, but we all know it's just a shot in the dark.  The same is true about healthcare.  Sometime you just have to jump in feet first and hope for the best.

Finding the silver-lining in each day is what keeps me going.  No matter how difficult life gets it's important to see the brighter side of life.

The life of a 20-something cancer patient: Mmmm....cake

The life of a 20-something cancer patient: Mmmm....cake: Most of the time spent at a hospital is extremely unpleasant.  Can you imagine living in a hospital for months at a time?  Unfortunately, ma...

Mmmm....cake

Most of the time spent at a hospital is extremely unpleasant.  Can you imagine living in a hospital for months at a time?  Unfortunately, many of the children I visit at the cancer center are growing up in the sterile, unwelcoming, cold setting of medical center.  It breaks my heart to think about how awful it must feel to be stuck in a hospital bed everyday while other children their age are growing up in their homes, going to school, and playing freely with their friends.  The difference is night and day.  I see the sadness in their eyes when their siblings come to visit showing off ribbons, trophies, and awards they have received because they live a "normal life".  I feel the torment they go through as their families flip through pictures of their parents and siblings at sporting events, school carnivals & fairs, and pictures surrounded by all of their friends.  I know how much they hurt inside because they desperately want to be at those celebrations.  I often experience that same pain.

Instead of letting myself, and the children wallow in these melancholy feelings I try to bring fun and excitement to them as often as I can.  Recently, I organized a cake decorating day.  I reserved the community room for the entire day.  I informed the parents, doctors, nurses, and administration of my plan.  They all agreed it was a fantastic idea, so I made it happen.  Originally, I was going to try and bake all of the cakes myself.  I quickly realized that I was bitting off much more than I could chew.  Alternatively, I decided to call some bakeries in the area.  I explained my concept to the bakers and asked if they could help.  Many of them said they would love to help, but there would be a considerable fee.  I know that I could not afford to pay for the cakes myself, and I would never ask the families to pay.  They have enough on their plates as it is.  My last call was to a small bakery near my house.  Thankfully, they offered to help, free of charge.  All they of me asked was to tell my friends and family, no matter the occasion, if they need a cake, or baked goods to go to their bakery.  It was a deal!  They would have twelve 10-inch round cakes ready in two days.  They also covered them all with a thin layer of fondant in order to make them easier to decorate.

The morning of the "Cake Day" I was running on sheer adrenaline and excitement!  The bakery was on the route from my house to the hospital, so my medi-van driver agreed to swing by the store with me to pick up the cakes.  His only condition was that he got a slice of cake.  I was more than happy to oblige.  I asked the parents to bring in some decorating supplies to share with everyone.  Walt(my medi-van driver) bought some goodies to garnish the cakes with at the bakery too.  The last stop was Target to get some aprons, stickers(so we could put their names on each apron), and table cloths.  Each stop filled me with more elation.  I could not wait to surprise the kids!

Once we arrived at the hospital, I sprinted up to the children's floor community room.  Walt, a few nurses, medical assistants, and myself set up for the big reveal.  After everything was organized, I walked down to the patient rooms.  I popped my head in and said "Get ready to get messy!"  The children had no clue what was going on.  Their parents and nurses helped them out of their beds, into their slippers, and walked them down to the community room.  The minute I opened the door, the kids squealed with excitement!  I told them they each had a cake to decorate, and we were going to decorate a few others for the doctors and nurses.  The entire afternoon was filled with laughter, dancing, frosting, edible glitter, sprinkles, etc.  For those few hours I saw no pain, no sadness, no tears, and no fear.  They were all kids, just being kids.  It was the most beautiful sight.

As the children finished up their masterpieces we had the "parade of cakes".  We all walked around the room to view each cake.  The children got to explain what they made and why they decorated the cake the way they did.  We must not forget the best part...the cake tasting!  We sliced into the cakes and devoured each delicious bite.  As guaranteed, Walt got a big ole piece of his favorite double chocolate cake!  By the time the afternoon was over, we were all covered head-to-toe in frosting and other various toppings.  It was a sticky, messy, sugar-filled afternoon, but it was a blast!  

Each of the children got to keep their personalized aprons, and got to take another piece of cake back to their rooms for later.  The rest of the cake we shared with the floor doctors, nurses, and maintenance crew.  Lord knows they had quite the mess to clean up!

That day will always remind me no matter how difficult life gets, we have to keep smiling and laughing.  Live for the moment.  The rest will fall into place when the right time comes.  I live each day by following my three L's...LIVE the life you want to live, LOVE those you want to love, and LOOK the way you want to look.  Don't let anyone other than yourself dictate who you are.

The life of a 20-something cancer patient: 48

The life of a 20-something cancer patient: 48: I am used to receiving less than positive news from my doctors.  In fact, I'm much more familiar to the upsetting diagnoses than the upl...

48

I am used to receiving less than positive news from my doctors.  In fact, I'm much more familiar to the upsetting diagnoses than the uplifting reports from my oncology team.  A few weeks ago, I was called into my general oncologist's office.  I wasn't nervous, or anxious because I'm in his office more than I am in my own home.  At least it feels that way.  I assumed he wanted to go over my recent scan, my treatment plan, or simply discuss how I am feeling.  The minute I walked through the door, I could feel the tension and the mood shift.  I usually barge right into his ridiculously large office and crack a joke about how the room is bigger than my entire house, or ask him if he needs an interior designer.  I often tell him I'll work for free if he can knock a few thousand off of my medical bills.  We laugh and then get down to business.  The vibe was much different on this particular day.  I could see it in his eyes.  I could feel the sense of sorrow he was feeling.  My carefree, jovial attitude quickly switched gears into a state fear and concern.  I sat down in the chair across the desk from him.  He looked up at me.  Our eyes locked, and for some reason my tears began to well up.  I felt a cold sweat take over my body.  I could feel my face turn a flushed pink color.  My hands and legs began to fidget as I prepared myself for the heartbreaking news.  I could tell that my doctor was searching for the right words to convey the news, and soften the blow.  I looked directly at him and said, "give it to me straight doc.  I can take it."  He said "I know you can handle it.  You are so strong."  I just don't want to utter these words to you."  I could feel my heart racing.  He had never said anything like that to me.  I felt his pain, and he felt mine.  Then, all in one breath, he revealed that my last scan showed that 48% of my body has been taken over by tumors.  Three different types of tumors to be exact.  It's very unusual to have multiple types of tumors, but I have adjusted to being a medical anomaly over the past five years.  However, this information was gut-wrentching.  I placed my glasses on my oncologist's desk, laid my head in my hands and began to cry.  I didn't know what else to do.  I sat there for a minute before my doctor came around his desk, he took my hands and wrapped them around his neck.  He let me stand there as long as I needed to.  I sobbed into his chest and repeatedly asked why?  Why me?  Why am I not getting better?  I could hear his voice crack as he told me he didn't have the answer to that question.  He wiped a tear from his eye, embraced my shoulders and said that he will never give up, or stop fighting as long as I make the same promise to him.  He pulled me back into his arms and continued to comfort my broken spirit.  As I walked out of his office, he cleared his throat and told me, "If anyone can beat this, it's going to be you.  Now go home and get some rest.  I'll see you in the morning."  I gave him a wink and a smile as I entered the hallway.  I was in a fog as I walked down the hallway and made my way to the medi-van pick-up area.  Just then I saw Rodney(one of my favorite drivers) pull up.  He jumped out of the drivers seat, walked to the other side of the van and opened the door for me.  I smiled and thanked him, as usual.  He closed the door and hopped back in the drivers seat.  Before he pulled out onto the road, he looked back at me and said "You know sugar, I look forward to seeing your sparkling smile each day I drive this van.  Your smile could brighten even the gloomiest of days."  In that single moment, I knew I had to keep fighting this fight.  No matter how difficult treatments are, how awful the side effects of those treatments, and life in general gets, I will never give up because so many wonderful people believe in me.

I continue to aggressively battle my cancer.  I have learned to take my treatment day-by-day, hour-by-hour, or minute-by-minute if I have to.  I have always taken my cancer head-on and with complete honesty.  I have never been afraid of dying.  My greatest fear is leaving behind the ones I love.  My beautiful family and my incredible friends.  I often wonder if I die young, who will I miss out on meeting?  I'm not ready to leave this life, but while I am alive I will enjoy every minute of it.

Speaking of death and dying.  Last night I had a dream that both scared the crap out of me and filled me with serenity.  My dream started by a tall man in a black suit knocking at my door.  He asked me if I was ready.  I was confused.  Ready for what?  He pointed over to a black town car.  He told me he was there to drive me to a very special place.  I shrugged my shoulders and said that I guess I was ready to go.  He walked me to the car, got me all settled in with a glass of champagne, and took off down the road.  He couldn't tell me where we were going.  He kept repeating that I would be happy with the destination.  I decided to relax, put my feet up, and sip my glass of bubbly.  We pulled up to this run-down, dilapidated looking motel.  He opened the door for me and said we had arrived.  I looked at the dump and thought to myself, "Why the hell did he bring me to this shit-hole?"  He helped me out of the car and walked me to the door I was summoned to.  He told me to go in whenever I was ready.  The door was unlocked.  I watched him saunter away.  I was confused and nervous.  I reached out for the doorknob and noticed the markings on the door.  The writing was not normal hotel numbers.  This particular door read February 18, 1985(my birthdate), and below it read October 23, 2014(the day I died apparently).  I was terrified to open the door, but I knew I had to.  Where else was I supposed to go?  I had no idea where I was and the driver was long gone.  I slowly turned the knob and opened the door.  The first person I saw was my Grandmother Alice.  She looked absolutely gorgeous!  She was youthful, smiling ear-to-ear, and had an angelic glow about her.  She walked over to me and gave me a huge hug.  As we embraced, she whispered in my ear, I never thought I would see you here so soon, but I'm glad I get to hold you again.  After a long embrace, she took my hand and walked me through a mob of people.  They were all family members and friends who had passed away years before.  They all looked so lovely and luminous.  I realized that I was no longer alive.  I'm not sure if I was in heaven.  I couldn't tell you.  I only remember feeling an overwhelming sense of love and happiness.  The best part was, for the first time in a long time, I was pain free.  As we were celebrating and catching up, I would get these flashes of my family and friend that are still living.  I was being sent glimpses of their lives.  Moments in which they wanted me, or needed me with them.  Even though I wasn't physically with them, I was there.  I was witnessing it all.  I felt their joy, their pain, their elation, and their sorrow.  I was able to help them through their challenges, and revere in their happiness.

I cannot say with complete positivity that I will die at a young age, but a large part of me believes I don't have many more years on this Earth.  My dream, although very morbid, calmed my anxieties somewhat.  Even after I pass, I will be with you all.