Chapter Twenty-Five: A Slant of Light

Every morning when I unlocked the door to the chemotherapy suite at the cancer hospital’s regional site that I worked at and lived only minutes away from, the first thing I glimpsed was the fish tank. The large, rectangular, and shallow fish tank that was filled with mounds of sand, swaying fake plants, and three saltwater fish that swam and swished their tails and fins freely in their bubbled and watery home. There was the giant golden puffer fish with his textured soft golden hues, sharp teeth, and odd eyes that protruded from their sockets to stare at everyone. There was the flattened and powdered blue-bullied tang fish with neon fins that chased after the golden puffer to show it who was boss. There was the orange and black clown fish that everyone called “Nemo” that played in the sand and kept to itself.

Working at a cancer hospital quickly taught me that cancer or any kind of illness was not racist or prejudiced. Naturally, I knew this from my own health experiences, but working day in and day out with patients truly opened my eyes at a world of the sick who sought out hope, happiness, and, most of all, good health and a cure. Cancer or any kind of illness attacked anyone it pleased.  I encountered and worked with patients of all ages, races, and beliefs suffering from all cancers. These patients touched my lives and it was my goal right from the moment I stepped into my role as the main chemotherapy scheduler that I touch their lives in the best of ways.

As the main chemotherapy scheduler that sat facing the entrance of the suite, I was the first face that chemotherapy patients saw in order for me to check-in that the patient had arrived. Once I clicked on the button that a patient had arrived, I strode to the pharmacy and then to the nurses’ station to inform them that a particular patient had arrived. Returning back to my frontline desk area, our waiting area slowly filled up with patient after patient that was not there because they wanted to, but because they had to save their life with this chemotherapy drug that their medical oncologist had deemed appropriate and capable to kill the cancer cells.

As patients waited to be called in by a nurse that a chair was ready for them and that their chemotherapy drug was prepared to flow in their curved blue veins, they either sat or stood upright in the waiting area to watch the fish. These patients splayed their thin, cracked, and bony fingers on the fish tank with sad and soft smiles on their faces as they followed these fish fluid motions with their eyes or fingertips. The patients giggled with childish delight and said to me with sparkled and sunken eyes: “These fish actually follow you! They are amazing! How do they do that?!”

Just about all the patients were infatuated and curious about this fish tank and these fish, but when they were not gazing at the fish, they were held by a loved one in the waiting area as they awaited their time with chemotherapy, chatted with their loved ones, read a book, sipped on hot and steaming complimentary coffee that was offered in the corner area of our suite, knitted, or just stared into space with their weaved hands in their laps and thoughts that whirred in their minds. The moments I treasured the most was when the patients gave me a glimpse into their life separate of their illness, because it somehow gave me an unspoken comfort that I was also not alone with trying to define my own life outside of my own chronic illness and string of health problems. They showed me pictures of their family and friends on sandy beaches with radiant smiles and bright bathing suits. They shared books with me that they were reading and even gave me their creased or hardcover books that they wanted me to read to join in their love of getting lost into the world that the written words painted. They showered our chemotherapy nurses and my direct chemotherapy co-worker and I with stories and endless food as a way of thanking us for giving our all as they endured their regular chemotherapy treatments and visits: chocolates that melted on our tongues, candies that made our faces pucker with soured deliciousness, and fresh baked goods out of the oven that warmed our tummies and spirit.

When patients were finally called in that their cocktail chemotherapy drug and a chair was ready for them to lay back in and let the drug drip into them, their faces ranged from relief at modern science chemotherapy capability of killing those bad cancer cells, dread at modern science chemotherapy capability of also killing the good cells that we needed, and fear that the cancer had already spread too far and too fast only to result in death.

In the back area of the chemotherapy suite were nine cushioned chemotherapy chairs that overlooked the midnight blue ripples of the Hudson River and Mother Nature in all her unique glory. In the summers, the warmth of the sun shone on to our patients’ faces, giving their gaunt and tired faces a tinted glow of peace and comfort. Sometimes, when I walked to this back area to report to a patient about a chemotherapy appointment or radiology appointment that I was working on to accommodate him or her, the sun seemed to bathe all of these patients’ faces with a slant of light that could only be known as hope. It was always at the back of my mind as to how blessed I was that I was given two chances at life with two life-saving kidney transplants, but it was when I finally began to work at this cancer hospital and directly with patients that this feeling of how life was such a gift was at the forefront of my mind. Sometimes, I stopped and caught myself as an outsider looking in that had come this far since my second kidney transplant with finishing up high school, university, and then working full-time and spending these precious times with my family members and friends that I thought I would lose when I was a pre-teenager. After all these years, I was healthy enough to fulfill my desire to work with and help patients directly and just simply live life.

It was a gift to work full-time and to know that I was learning so much every single day about chemotherapy drugs and treatments and doing so much by helping to accommodate these patients who made sure that their personal lives were not swallowed whole by cancer. However, as much as a gift as it was for me to work full-time, it was also a curse to be reminded day in and day out how fast this gift of life could come to an end and how we took so much for granted. During the time I worked in chemotherapy, I dealt with a multitude of emergencies that I never even believed that I could handle because they hit too close to home with flashes of my childhood: a patient having a heart attack in front of me, a patient falling and breaking her nose with her blood flowing everywhere, a patient that stopped breathing and a crash cart and emergency response team ripping at lightening speed from a code that my co-worker and I had to call in, and, most of all, adverse chemotherapy reactions, resulting in the medical oncologists stampeding at warped velocity to rush to the chemotherapy suite. Death was so close, but life and living it was closer.

There were times of sadness and anguish. Patients and their family members cried and reached out for an embrace as their lifesaver when none of the chemotherapy treatments worked to kill cancer cells faster than they spread. We received death notices periodically that another patient had succumbed to cancer. Every single person released a sigh of sadness. It was also my own curse to remember and know all these patients by their names, their lives, and their appointment preferences, because, as usual and unsurprisingly, I struggled and gave my all to make whatever times or whatever they needed to happen. Logistically, I was a receptionist that scheduled chemotherapy appointments and treatments, but there were so many daily challenges that made scheduling a tiresome and often frustrating ordeal. The ratio of the large amount of patients with various chemotherapy drugs to the nine chemotherapy chairs was unbalanced and left me to constantly rearrange and reschedule patients around in order to schedule a necessary chemotherapy treatment for one patient. The constant needs and demands of the doctors and nurses often made me internally scream and brought back a box full of unpleasant memories of my times of doctor shopping and insurance headaches. The politics of how to make nice with my co-workers on the surface and hide my health came up again for me when the moral majority of my co-workers were female and around my age in number, but not in life when they talked about manicures, reality television shows, purses, clothes, while I was a homebody that preferred to read, write, cook/bake, and began to deal with ghosts of my childhood problems with my left hip.

I had not always worked at the regional site only minutes away from me in Westchester County. Back in October 2006 was when I became an official employee for this cancer hospital that was so well renowned and just about a brand name in the cancer services world. I was actually assigned to work on the surgical floor at an outpatient site on 53rd Street. The main cancer hospital was located in the upper east side of New York City, but there were also many other sites in New Jersey, Long Island, Westchester County, Brooklyn, and dotted all over Manhattan in order to accommodate patients who had to endure frequent chemotherapy treatment appointments. To work on the surgical floor meant that the cancer still had a chance of removal and lives were saved. I heard of sad and heartbreaking stories of patients who died after an ongoing battle against the metastasized cancer on the chemotherapy floors, while death was unheard of on the surgery floor that I worked on. I worked on the surgical floor for a year, but then purposefully chose to work close to home in quiet and relatively simple suburbia life as my hip condition began to inflict sporadic muscle spasms and pain. The three-hour, round-trip, and door-to-door commute via train as well as late and unpredictable hours of the inability to leave work until the last patient finished with the doctor made me feel exhausted and my hip ache to no end. Though I had not yet met with an orthopedic surgeon as **Dr. Friedman had advised out of fear of hearing what was to truly come next, I sensed that I had to preserve my time, energy, and money to prepare for what was about to happen with my hip and that working close to home was the first big step to preservation.

With steady and predictable work hours at the regional site and more free time than ever because I no longer endured such a long commute to and from Manhattan, I began my personal project of trying to find other organ transplant candidates and recipients just like me. The very first organization that I stumbled upon thanks to the World Wide Web was the National Kidney Foundation based in New York City and only minutes away from the Empire State Building. The National Kidney Foundation’s website was a blend of oranges and golds that hypnotized me as I dived into information page after information page about kidneys and their function, dialysis, transplantation, living organ donors, message boards of invisible voices of people who were either a transplant candidate or recipient, and more. The page that appealed most to me was “The TransAction Council,” which was a group of long-time transplant recipients who held a deep-seeded passion to help educate the public by sharing their personal transplant story as well as inform and inspire other transplant candidates and recipients through ongoing resources and advocacy work. It did not take me long to draft a heartfelt letter to the National Kidney Foundation president that I wished to get involved somehow. I expressed how I grew up feeling so alone and isolated from my age-appropriate peers from my personal health challenges and how I was on the search for other transplant recipients and candidates that I could connect to by experience AND age. Now that I was healthy (knock on wood) and had reaped the benefits of helping others with my jobs as an activity leader, then as a case manager, and now as a receptionist at a cancer hospital, I just wanted to keep giving and gain by giving.

It took an even shorter amount of time to receive a response from the National Kidney Foundation president who had forwarded my letter to **Catilyn, the social worker and coordinator of “The TransAction Council.” Catilyn called me only days after I received the letter from the president. She said she wished to meet with me to discuss National Kidney Foundation and me possibly joining the next two-year term as a TransAction Council Board Member from 2006-2008. The National Kidney Foundation had an entire floor in one of the massive skyscrapers that New York City was famous for. I was welcomed into her cluttered office with papers and books strewn everywhere. I smiled tentatively. Caitlyn was probably in her late 40’s or early 50’s with a beaming smile and light brown ringlets that encircled her small oval face. She was practically bursting and bubbled over with excitement when I first met her. I was stunned and speechless when she grabbed and held my hands, wrapped me in a hug, and said: “You can’t know how honored and happy I am to meet you, Mary.”

I stared at her, dumbfounded and with suspiciousness swimming in me. Why was she treating me like I was a celebrity? She gestured for me to sit down right next to her and explained, “The young population of transplant recipients and candidates are a group that we want to focus on and help, and I think that you would be such a great asset to reach out to this population. Look at you with doing so much now with working full-time and trying to help people out. You would be awesome and awe-inspiring for the TransAction Council!”

Hmm, I thought, so she really had read my letter to the President of National Kidney Foundation. I reiterated vocally to her what I had written in the letter the President of the National Kidney Foundation, “I do not know any young transplant recipients. I just want to connect with other people who have been through what I’ve been through and know that they are not alone and that I’m not alone.”

“Believe me, Mary, you are not alone. There are many other transplant recipients and candidates all over this country alone, and you will really see that when you join the TransAction Council group. I know you will make such a great difference with the council, but I also think that all the other members of the council you will meet will also help you. Just think about it and let me know. In the meantime, I wanted you to have these.”

She handed me a couple books that seemed to be catered to young transplant recipients. I hugged the books close to me and we continued to chat for a little while longer about the National Kidney Foundation. There was this voice in my head that said to tell Caitlyn before I left that she should count me in as one of the board members for the TransAction Council, but there was something stopping me. My acceptance would confirm and show all my health challenges and even weaknesses that I had been so accustomed to hiding from people for so many years and especially since I began working. I had this eerie feeling that once I said that I would join that a whole, new, and unfamiliar world would open for me and rather than embrace, I hesitated and felt prickling sensations of fear probe at and in me. I reluctantly shared with my Dad about my new search of finding other transplant recipients and candidates and how I was offered this opportunity as a TransAction Council Member for the National Kidney Foundation. I waited for my Dad to cringe and caution about keeping to myself, but he surprised me by lighting up like a Christmas tree and saying: “That is great news!! When do you start?”

“Well, I’m not sure if I should do it, because I thought you always said that I should hide my health stuff..?”

My Dad shook his head and explained: “No, I said for you to hide your health stuff in the work setting, but not in your personal life. It is great for you to meet other people just like you and making this difference that you say you want to make, and I know you can make.”

Even at 24-years-old, I needed confirmation from my Dad who had been the solid rock of reason and solace through all these years that revolved around my health.  I felt myself tearing up with sentimentality.  My Dad really believed that I could make a difference.  It was just a matter of believing in myself and now doing it, rather than just saying it.  It became clear to me after all these years that the greatest challenge was not only all these health obstacles that my family and I had faced and would continue to face, but making the choice of how to deal with them and that I now faced the choice to reveal and share with others just like me and even beyond in order to help others and help and heal myself and all the internal scars that could not be seen compared to all the physical and surgical scars that were engraved on my belly.  I flashbacked to my time when I was in the hospital after overcoming my kidney rejection and then to the most recent muscle spasm that occurred post-alcoholic and holiday frenzied fun and remembered my promise to God.  I could not break my promise.  It was time for me to become that slant of light to others by finally showing, telling, finding others, and especially me in the process. 

**denotes fake name to protect privacy of individual


Jennifer said...

Great write up Mary and as usual looking forward to the next chapter!

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