Tag: #cmlblog

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Finishing Florida and the Call Seals the Deal.

The week in Florida wore on as the reality of the situation sat on my shoulders like the rays of the Orlando sun … Relentless. A few days by the pool just relaxing, conversing with friends and playing with Nick helped the time pass by. We enjoyed dinners out and a few more parks and sights to see, as these diversions helped to pull me away from the darkness.

At night, I entered into an alternate state of despair. With Nick tucked in and sleeping soundly, my attention and my anguish was directed towards another major facet in this fight. As my wife Lori lay beside me I would put my hand on her big belly and try to connect with the little person growing inside. With four more months to go the questions would run on in my head like a broken record. ” Will I ever get to meet my child”? Will they ever get to meet their dad? What would he or she look like? Will I ever get to hold my baby? It just wasn’t my future I was worried about. It was theirs. How would they grow up without me? How could I leave my wife so young to raise the kids on her own? We had to get home and get this show on the road. I needed more answers, more education and more time at home to be able to process this mess.

As we prepared to make our way back home, the call from Dr. Terzian came in. The Bone Marrow Aspiration confirmed the diagnoses. I Had Cancer. I asked him if this was one hundred percent certain as far as the lab testing was concerned. Was there any way that they could be wrong. A Hail Mary question I guess. He told me that I could always get another opinion but he was very certain. I would not have to see him again as he recommended me to a young Oncologist at Hanahmen Hospital in the city named Dr. David Topolsky. He would begin the process of testing myself and my family first as potential donors for a potential Bone Marrow Transplant. Dr. Dave wasn’t playin…as soon as I got home… I needed to be there. No delays.

We thanked the Selvaggios for graciously having us and helping us navigate this crazy week with what should have been a fun filled vacation and get together. Who would have known. The trek back to Pa. was on. Another two days of driving with my eyes focused more on the rear view mirror than on the road ahead of me. Staring at my beautiful baby boy. Staring at my beautiful baby boy.😔

Next: An ultrasound and I am officially a Cancer Patient.

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The Next Leg.

I was pretty tired the next morning. My right hip was aching from the Bone Marrow Aspiration that skewed me deep into my hip bone. It was not a pleasant experience. The pain when the huge needle pierces the bone and the moment the Marrow begins to be exracted by the huge syringe is awful. I grabbed the table with my fingers at the top and my toes at the bottom and held on for dear life. I’m sure others who experienced a bone marrow aspiration can fill you in. This was my first. After 6 more years I think the count topped out at more than twenty five procedures. A real “Pain in the Ass”! When I got home I took a few ibuprofin and my new drug Hydroxeurea. This drug would help reduce my CBC- White cell count, currently at 55k. Normal is 6k to 10 k. With CML Leukemia, your white cell count uncontrollablly grows into the millions rendering your immune system unable to fight infection. The multitudes of new white cells are just too immature to help you survive.

Lori, Nick and I packed up the car to finish our journey. A longer leg from Richmond to Lake Mary Florida where Aunt Michele was waiting to greet our sullen crew. Another rough trip. Tears in my eyes, trying to keep Nick in the dark and make him laugh. He had no clue. Two and a half years old, so smart,so cute, so happy. He was my world. We’re gonna have a great week for him. And hopefully, Lori and I. I figure that I’ll give this predicament a few days to sink in and then I’ll need to get over it. The battle will begin soon and there will be no way that I’m losing it! We’re here! Hi Aunt Michele and Uncle Ed! Let’s do this Disney vaca. We’re ready y’all!

Next up: Mickey and the Lion King.

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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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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