Life Interrupted (eBook)

Introduction

I was officially diagnosed with Non-Hodgkin’s lymphoma on May 17th 2002, six weeks after my thirty-first birthday. A CT scan and a biopsy in the left groin were performed in early May at the Beth Israel Medical Center (BI) in Boston. Two weeks later, my primary care physician called me to say he had some news.

My experience with cancer was split into two major episodes. The first one took place from 2002 until mid-2005, when I battled my lymphoma with various treatment regimens and medications. I came out of one treatment, only to see myself head back to a consecutive one several months later. My treatment course wasn’t concise and nor was it a straight line. It was more like a series of roller coasters—four relapses, multiple hospital admissions, and much aggravation.

The second episode began in April 2005 when I began to navigate the aftermath of an donor stem cell transplant I underwent in 2004. I inherited a new immune system to combat my resistant lymphoma, and from that point on my entire body spun out of control. It was a condition called Graft vs. Host Disease (GVHD), manifested by an immune system that launches an attack on healthy organs such as the liver, the lungs and GI to name a few. GVHD nearly killed me. I nearly died from the treatment that was supposed to save me from cancer in the first place.

My friends and family saw me high fiving after clean scans and celebrating after positive outcomes. However, those days were outnumbered by interruptions and frustrating instances when my life constantly shifted between a healthy mode and a sick one. I was diagnosed with lymphoma when I was a young single guy, living in a bustling and vibrant city, with a great job, with ample social opportunities, and on board a life path of independence and self-fulfillment. I knew how to manage and fit into my normal environments. But I wasn’t sure how to best manage my new health challenges because thirty-one year-olds don’t expect to be dealing with cancer. It was never part of the deal. On many occasions, my social and business interactions while in the land of Cancer were orchestrated on a trial by error style.

What is not an error is the capital ‘C’ I apply in this book to the word “Cancer.” You’ve probably noticed it by now. It appears like that regardless of the word’s location in a given sentence, whether it begins one or whether it sits in the middle of one. The reason behind this was that Cancer was such a mammoth and capital event in my life, it would be a disservice to spell it like other words, even though it’s grammatically incorrect. But screw that. There were a lot of incorrect things about Cancer.

To better understand the tenacity of my lymphoma and my experiences in the pages ahead, I’ve listed the chief dates and outcomes of each treatment protocol. This timeline showcases the path a cancer prognosis can become, and what it takes to treat one single patient, one disease, one at a time. For me, there were no shortcuts, nor discounts. Nevertheless, I was lucky to be offered options after each relapse, a luxury that not many cancer patients benefit from.

May 17, 2002

Diagnosed with Non-Hodgkin’s Lymphoma (NHL).

June-July 2002

Treated with a chemo regimen called CHOP, together with a drug called Rutaxin.

Fall 2002

First relapse

April 2003

Autologous stem cell transplant. They collected my own adult stem cells prior to the infusion of chemo. After high doses of chemo were administered to beat down the lymphoma, my stem cells were re-infused, and started building up my inborn immune system.

Fall 2003

Second relapse

November 2003

Infusion of Zevalin, an antibody medication in an attempt to eradicate the low-grade tumor in my groin area.

Spring 2004

Third relapse

June-July 2004

Treated with chemo before my allogeneic stem cell transplant, in which the adult stem cells were from an unrelated donor.

August 2004

Allogeneic stem cell transplant was performed. The donor stem cells created my new inherited immune system. From this point on, my inborn immune system ceased to exist. I now owned an immune system from an unrelated female bone marrow donor.

January 2005

Fourth relapse

February 2005 = DLI (Donor lymphocyte infusion). The infused just the lymphocytes (a type of white blood cell in the immune system) from the same donor, this time without chemo or hospitalization.

April 05= Acute GVHD breaks out.

July 05 - November 2011 = Chronic GVHD.

I started writing my first notes of my Cancer experiences on July 5th, 2004 in my apartment in Brookline, Massachusetts, while listening to my iPod. The songs I listened to were from my playlist called “Pacha.’ The song I kept playing was called ‘In my memory’ by Tiesto. It was purely coincidental that I worked on this memoir while listening to a tune with such a title. I simply loved the song. It powered the creative juices in me to launch and especially sustain this long writing project. It took me a while to finish the book because just like the title suggested, I couldn’t get away from the constant interruptions that threw me of course, from nasty infections to littered GVHD outbursts. When those evils hit me, I had no oomph to write anything.

Life, Interrupted not only describes the negative interruptions and continued halts to my normal life due to infections and treatments. It also depicts the positive interruptions that helped me forget about my health fiascos, and allowed me to return to my normal life. The stories and encounters paint the real picture of what those around me couldn’t always see as outsiders looking in. They say an image is worth a thousand words, but even my pale looking face, my nasty scars and general physique that suggested an unkind hospital experience didn’t tell the entire story. They didn’t depict any of the mental tribulations coming out a transplant, or the contemplations that developed immediately following a rough infection or a relapse. Yet, those were the spaces where the cores of my challenges were fought.

For example, chemo itself didn’t bug me as much as its impact on dating, seeing friends, or how to dress for work. GVHD killed my lymphoma but my quality of life was compromised more so than during chemo, and to an extent that at times I questioned the purpose of the stem cell transplant in the first place. And every relapse caused such an extended chain of events that no one but me could envision the shit I was about to face. The weight of junk my head had to deal with was enough to fill a fleet of garbage trucks. The trials and day-to-day minutiae beyond the treatments and physical endurance were undoubtedly the most distinctive problems. And that remains the prime focus of this book.

Although this story represents my own set of circumstances and encounters, it is told from the eyes and mind of a young adult Cancer patient. It includes real experiences, genuine tribulations, some grim stories, and some amusing ones that many of my fellow young Cancer patients can relate to. Some patients who have completed their Cancer battles victoriously may find commonalities in here with their past experiences. Some who are in the midst of their treatments may well encounter one day some of these descriptions and narratives. but may also experience different nuances and flavors.

Regardless of how my encounters literally stacked up to yours, the emotions, the drive and the fire that drove me to act, think, say, and react during my experience are many times a unique DNA that can only be seen from and heard by a young adult Cancer patient. It is vastly similar to a quote I once heard from my college professor who said that two twenty-one year-olds, one living in Paris and one living in L.A who have never met each other, have more in common with one another than what they each have with their own parents. This commonality outlook was also noticeable when I researched and read stories online and in chat rooms of other young Cancer patients from around the country. Their brief anecdotes were immediately relatable to me. I hope my experiences will reassure other young adult sufferers, wherever they may reside and at whatever point in time they are in the disease management process, that they are not alone in how they feel, and whatever they endure from a psychological standpoint. You are not crazy, nor mentally imbalanced to feel lonely, insecure, disconnected, afraid, or any of the emotions and thoughts that strike them during their uphill battle.

This book is primarily for young adults fighting Cancer, or those who have fought the disease as a young adult. It is also relevant for the immediate and less immediate patient’s caregivers including family, relatives, and friends. Others who may benefit from knowing what goes through a mind of a young adult with Cancer are those who treat us every day including oncologists, nurses, social workers, volunteers, and other medical specialists. Some material may not be suitable for children under the age of thirteen. Parents’ discretion is advised.

This is clearly not your politically correct Cancer book. You won’t always find the fluff and comfort that you expect to...