Author: Jgknjlapk

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Breaking the news

Lori went back to her office to wrap up some office issues she had left to handle before our departure to sunny Florida. I couldn’t imagine what state of mind she was in after she left the hospital. My job now was to break this fabulous news to my parents and family. It was about a half hour drive to my their home in Fort Washington, PA. This setback would, of course, delay our departure but this news was too important to tell them over the phone. This development was going to rock their world in a terrible way. We have such a great, loving family and although no family is perfect…we were pretty tight. This news would test this to the limit.

I pulled in the driveway and hesitantly exited my car and walked in the door. They were waiting for me to arrive, no idea why, since my call to them was very vague. “I have Leukemia”, I told them. As I began to explain the diagnosis and treatment options, the pain I could see in their faces was causing me to cry and they began also as the reality of the situation sank in. This was just unbelievable. I had a great business, a wonderful wife, beautiful son and now only four months until the birth our second child. Why me? Never smoked, never drank, never did drugs Just bought a new house. What the F**#k?? Why??

We cried, we hugged, we spoke positive thoughts and we vowed to do everything in our power to win this unknown battle that I was about to face. We all were about to face. Back in the car, as I pulled away, my focus needed to center on getting on the road to Richmond, VA. This was our first stopover on the way to Disney. A seven hour ride that would turn out to be the hardest ride of my life. What was supposed to be such a joyous occasion today, became a vacation that could literally turn out to be the last ever with my family.

The car was loaded…the gas tank full….the emotions were intense and with complete innocence Nick said let’s go dad! The next seven hours I drove down I95 South with tears streaming down my face. The whole time staring in the rearview mirror at my beautiful baby boy. I was contemplating the worst thing I could ever imagine. Not seeing my kids grow up. Not being there for them …as babies…as little boys.. as teenagers and young men. What I would miss. What they would miss. My wife tried to soothe me and talk positively. As worried as I knew she was, she tried her best to calm me down.

We made it to the Fairfield Inn around seven and just dropped on the bed. Nick was out quickly. I never slept, I couldn’t. My mind was racing and I couldn’t take my eyes off of Nick and Lori as they slept. How would I protect them if I wasn’t here anymore. It was 11 pm. The end of a very, very, long day.

Next Up: The Next Leg

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The Beginning of a long long day.

The twenty five minute ride to Frankford Hospital in Northeast Philadelphia seemed endless. Speculation ran rampant during my ride. How could they screw up my bloodwork? Why did I need to go directly to the hospital? Right away, with hardly an explanation? My wife would soon meet me at the hospital for the appointment.

I was to see a Hematologist/ Oncologist…Dr. Lor Terzian. My first encounter after filling out the normal mound of pre visit paperwork would be the phlebotomist who needed to take endless vials of blood…it seemed. Lori and I were introduced to Dr. Terzian and led into an examination room. The doctor asked me many questions about my extended family, my son, my history and probed my body looking for what, I did not know. We then were led to Dr. Terzians office and asked to relax until he returned.

Needless to say I was anxious and terrified at the same time. What was going on? Upon Dr. Terzians return, he sat down and said ” There is no easy way to tell you this…you have Leukemia. Specifically CML. Chronogenic Mylogenous Leukemia.” The new bloodwork reaffirmed Dr. Cieckos suspicions that there was definitely an issue. There most certainly was.

The doctor followed up his diagnosis with the fact that conventionally and with current therapies, I may only have one or two years to live. Possibly longer with a very dangerous operation called a bone marrow transplant provided a genetic match could be found to be able to do the transplant. His demeanor was somewhat somber as we asked him a few questions about a cancer diagnosis of CML. I needed so much information at this point. He asked me if I would allow him to perform a bone marrow aspiration. This was needed to evaluate my situation further. We would move forward and adjourn to another exam room.

Dr Terzian then performed the bone marrow aspiration. This extremely painful test is done to extract and assess bone marrow from an inner portion of your hip bone. After the procedure, I was bandaged up, felt like I was hit by a baseball bat and told that the results would take about ten days. The office would be in touch with me soon. Dr. Terzian gave me a drug called Hydroxyuria to be taken daily for 2 weeks, wished me well and told me to try to enjoy my vacation in Disneyland…. as best as possible.

I walked Lori to her car…hugged her and told her we would be OK. We would meet back at our house after I took a ride to my parents house. I went back to my car, watched my wife drive away…then broke down and cried.

It was 10:30 am. The day was just beginning. There was a long way to go…starting with hugging my son and not letting go…ever.

Next up: Breaking it to the family and driving to Richmond, Va.

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The Phone Call

May, 23rd 1996

Preparations for our trip were going well. The car was packed the night before and the excitement was evident as it was hard to fall asleep that night. Our first family vacation together, we couldnt wait to get going. Nick was going to see Mickey Mouse for the first time and my beautiful wife Lori would be making the trip 5 months pregnant with our second child tagging along for the ride. We decided to be surprised again, boy or girl, like when Nick was born, so no name yet for baby number two. Great things were happening for us! Departure time was approximately 11 am and we were set to go!

The next morning as we were making our final preparations for our departure, the phone rang. Quite early though, around 8 am. My wife answered the phone and told me that it was Dr. Ciecko. He needed to speak with me. Hmm. Mr. Keenan, he said with his quiet voice, we would like for you to come in this morning to Aria hospital to recheck your bloodwork. That there were some inconsistencies in the blood sample and they wanted to repeat them. Of course, I asked if we could wait until we returned from our trip. We were ready to leave shortly and it would be inconvenient to go there at this time. Sternly and direct Dr. Ciecko told me that the appointment was already set for nine am and I needed to be there. This was very disconcerting and needless to say very upsetting. Lori and I asked our neighbors to watch Nick for us since she already had plans to stop by her work for a couple minutes and I needed to head to the hospital. What could be so urgent? Something is not good, I thought. My mind was going a mile a minute. This day was not be starting out the way we thought it would be. Lori would meet me at Frankford Torresdale Hospital.

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Just Rolling

May 21st 1996

Life was good. Business was good. I had just a bit of a cold that wouldn’t leave me alone. Nick, my son was 2 1/2 years old. A happy, healthy young boy who couldn’t wait to leave for our trip to Disney World in a couple of days. We were driving down to Florida and staying with great friends near Orlando for ten days. A much needed vacation we were really looking forward to.

But first, a quick trip to the doctor. The first time in many years that I had been to a doctor. I needed to get something for this nagging cough before we left. I set up an appointment with a nearby office and was to see a brand new physician that was new to the practice, Dr. Ciecko. A nice, soft spoken man, Dr. Ciecko examined me and prescribed an antibiotic for my condition. We spoke about a few health related tests that I should be thinking about. I was 35 years old and told the doctor that I had a family history of colon cancer. Dr. Ciecko thought it might be wise to draw some bloodwork in case I wanted to have a colonoscopy done in the future. A quick trip to the lab and I was done with my visit. Thanks, Dr. Ciecko.

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Surviving CML- LEUKEMIA

I’ve been told that I should write a book. My Doctors have told me that I am one of the longest living survivors of this insidious disease that for so long was a death sentence.

I decided to initiate a blog to tell my story and maybe bring hope and health to those newly diagnosed with CML or one of the varieties of Leukemia or commiserate with those who are currently living with the disease for the short and long term.

My name is Jeff Keenan and I have been dealing with CML for 27 years. My blog will tell you my story of this roller coaster ride of emotional and physical ups and downs, scares and suffering, triumphs and elation, tears and joy.

I hope that my experiences and their outcomes will help those in need of answers to the long term management and life living with this disease.

I will chronicle my journey in great detail through my blog from beginning to my current situation…27 years as of May, 23rd 1996. You never forget the day when an Oncologist tells you that you may only have one to two years to live.

I am new to blogging and hope to master the concept as well as be able to discuss and give helpful advice, good vibes, and pertinent info to all.

Jeff

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Hello world!

My CML Adventure…27 Years of living with cancer.

May, 23rd 1996 the beginning… to the present. Been a long journey. Here’s my story.

I’ll be posting two or three times per month. Please join in and enjoy.