Why I Ride ...
Dear Family and Friends,
It's that time of year again; The Pan Massachusetts Challenge is fast approaching. The first weekend of August, we will again ride the 192 miles from Sturbridge to Provincetown. The PMC is the largest contributor to the Jimmy Fund at Dana-Farber Cancer Institute. My name is Rich Boyajian, I live in Winthrop MA with my wife Pauline Boyajian, Grandfather Joe Conley and two daughters Krystle and Shealagh. I am a nurse practitioner and the clinical director of the adult survivorship program at Dana Farber Cancer Institute in Boston. So yes I am riding to raise money for the clinic I work in but that is not the whole story.
The real reason is I am also a cancer survivor myself. In 1995 I married my college sweetheart Pauline 6 weeks after my father passed away on fathers day from metastatic lung cancer. On August 2, 1996, while we were still newlyweds, I was diagnosed with leukemia. My wife certainly believed in the part of the wedding vows about sickness and in health. I will never forget that day.
I was 28 yo and went to my brand new PCP that morning because I knew something was not right. I was very fatigued, falling asleep after work exhausted. I had had night sweats for a period of time but they went away. I was only able to eat small portions because I became full so quickly and my abdomen was mildly distended. I thought because of my college days my LIVER was the issue, it turns out my spleen was so large it crossed my abdomen. On the outside I looked pretty good, fatigue but worked long hours, recently turned my nursing director in for medicare fraud and was getting death threats, so stress was pretty high also. Like any good nurse I rationalized away my symptoms until I could not ignore them. fatigue, small amount of weight loss, increase urination, thirst, decreased appetite and GERD. So I show up to see my poor new PCP Dr Jeffrey Wu. I looked ok, but he wanted to run additional testing and drew a complete blood count and was scheduling me for an upper endoscopy.
So I had the blood drawn and went to work as a visiting nurse. My first patient was a quadriplegic and I needed to do his morning care. So about midway through his care I received a page to a number I had never seen before. I called it and said I was returning this page and the phone line went silent for a few seconds (seemed like forever). What follows is what I remembered:
The quite voice said "oh Dr Wu needs to speak with you". With all my years of training as a nurse I knew it was not good to be paged by your new PCP right after an office visit. Just kidding, I did not need to be a nurse to have my heart sink into my stomach.
Dr Wu (I still feel bad to this day for him) got on the phone and in a soothing fatherly tone said, Richard normally I do not do this over the phone but I need you to go to the Brigham and Women's emergency room. he paused and I asked "why", because your white blood cell count is elevated to which I replied "how High".
Dr Wu then said "439,000", to which I responded, "so I have leukemia". Dr Wu said yes and you need to go to the Brigham and Women's emergency room, a hematologist will meet you there. I told him you really feel ok and look very good but he insisted you go ASAP because of the amount of blood cells, you are in danger of having a stroke"
So with all that news in hand, I now had to finish my quadriplegic patient's care. I composed myself and called into the office with perhaps the best excuse to not finish my visits that day. Once I choked back the tears telling them I had leukemia, I returned to the bedroom and completed his care, never saying a word. To this day the poor man has no idea why I was so silent and teary eyed.
So I proceeded to the ER all the while hoping I would not die of a stroke on the way.
My next entry will be about the ER visit, all from my wife's recall because I have blocked it from my memory probably because of the initial conversation.
Title: Certain Death 8-2-1996
I left off at my ER visit, most of which I have blocked from my memory.
I arrived at the ER worried about the possible stroke on top of having leukemia. I checked in at the desk and then had a seat. This was stressful. I got up and used the payphone (yes a pay phone) and called my wife. I was about to leave a message when she picked up have just gotten home from work as a special education teacher in Milton, MA. I told her I was at the BWH ER and I had leukemia. She told me to knock it off, stop joking around but she heard me choking back the tears as I said "I am not joking!" She was on her way when I called my Uncle Richie and then my Nana. Nana could not stay on the phone she was so upset so she gave me to pa (whose brother died from leukemia years ago). I asked Pa to tell my Mother and Brother because I did not want to make any other calls about it. Pauline arrived before I was taken for evaluation. I kind of freaked out asking the poor front desk person if they were waiting for me to have that stroke. Telling Nana and Pa was harder than telling my wife, these were the two people I owed everything too. they took me in and raised me from when I was in Jr High. It was this couple and my Uncle Richie who showed me how to grow up and to be a man.
So, I was taken to a room where I meet a wonderful man Dr Marcus Butler. He was the Hem/Onc fellow on call that day, lucky for me. Initially because my WBC was over 400,000, hematocrit was 25, and platelets were 969,000, it was felt I was probably in "blast crisis phase of CHRONIC MYELOGENOUS LEUKEMIA. So the discussion went something like "There is nothing they could do but that they would keep me comfortable. Since that day I have given that very same "Hospice" talk to many cancer patients. Dr Butler said they needed to do a bone marrow biopsy to confirm the diagnosis. Those of you who have had one know a BM biopsy hurts and I have done many of these to my fellow survivors over the years. Thankfully I do not remember having it. Thank God for the biopsy, it showed I had stable phase with just "bleep loads" of blood cells in my blood.
So my life went from certain death to they had a potentially life saving treatment. A bone marrow transplant from a matched donor. One good thing did come of the diagnosis, the death treats from my former nursing director Helen stopped.
So now at 28 years old I was admitted to the oncology floor at the Brigham to get lots of fluids, allopurinol and hydrea. The hydrea would destroy all the blood cell to lower my counts to a reasonable number but by doing so all the cellular destruction causes toxins. The fluids and allopurinol help to process the toxins so I did not have organ failure due to the amount of cellular destruction. So I was comfortable in a hospital bed with my life on hold with the future unknown and a difficult decision ahead. This sucked but I put on a brave face. My Wife thank god was a rock from the beginning. She is a small quite lady but a "Rock" tougher than anybody I have ever met to endure what she did. It is because of this life changing experince that my wife does not tolerate fools (although she does tolerate me) and has no room for BS. So while the medical stuff was playing out, the social situation was just beginning.
Title: Family, friends and acquaintances.
So sitting the Brigham and Women's Hospital room: My family soon showed up. Pauline (Chickie) was at my side and my in laws Pauline and Dennis arrived with Chickie's Aunt JoJo and Uncle Bubba. My mother arrived a little later. She was having a very tough time with her oldest son being diagnosed with leukemia. She had her two best friends Susan and Sandy by her side and at times they were helping support her physically because she was so stressed she almost fainted. My brother mark came in with his soon to be wife Alissa. I just remember being the center of unwanted attention. Everyone is looking at you lovingly but no one knows what to say and I felt bad for them. That is when I first realized how difficult is for loved ones to watch someone go through this cancer stuff. I thought back to my dad Harold "Nish" Boyajian's passing. He had been diagnosed with Stage IV lung cancer in 1994, based on my knowledge of lung cancer staging. It had spread to his bones by the time he was diagnosed. I remember being in the room when the Mount Auburn doctor told him and my step mom Debbie. My dad asked him what would he do if it was him. The doctor said he would go on a vacation to the tropics and enjoy the time he had left. Well we were all shocked but knowing then what I know now, I appreciate his honesty. Through great friends, Joe and Roseanne DiTomaso, I discovered an Oncologist in Philadelphia that for lack of better words had some success treating hopeless cases. My Dad and Debbie went down and began treatment. I held out hope being very unaware of the cancer trajectory at the time. He began to lose weight with little appetite and was very week. He left Boston for treatment in June 1995, it was close to father's day so my Uncle Richie and I were going down to see him because he was doing poorly and well we knew. I was hoping he would last until my wedding on August 12 but it was not to be. From what I remember he was a DNR and he had respiratory/cardiac arrest before we arrived. So this is all going through my head and all I could think was I hope I do not end up like my dad.
Go to OTHER LINKS this will pull up my story as a short video clip on YOUTUBE, it explains everything
