Tag: #leukemiasurvivor

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The Results

It had been about a month since my CML diagnosis and almost two weeks since my siblings were blood tested for their DNA markers to see if they would be a match to mine. A six out of six marker match would be the ideal outcome and provide the best situation for success. It felt like forever but Dr. Topolsky said it would take around two weeks for the results.

There was a lot of speculation as to which one of my siblings would be a match, if any of them. It was very possible that none of them would be. This was quite normal as my research into the percentage of success showed that possibility. I read about many bone marrow transplant patients that had to rely on the National Bone Marrow Registry for their donor or have a transplant using their own marrow which was radiated to remove the cells that would cause the CML. This type of transplant was not very effective.

The competitive nature of our family made the wait somewhat interesting. Bets were being thrown out there and odds laid out. My brother Glenn was 14 months younger than me. He had blond hair and blue eyes. I had brown hair and brown eyes. He was a clean freak, honor student and a soccer player. I was kind of a slob, attended school and an Ice hockey player. His odds seemed low. Plus I was much better looking. My sister Donna was six years younger, also had blond hair and blue eyes, also an honor student, a lot like Glenn. So far not looking good. Then there was Lisa. She was twelve years younger than me, an oops baby, lol, but had brown hair and brown eyes. She looked a lot like me, was a good student and although she was much younger than me seemed like the frontrunner. Genetically, it made sense.

So Lisa…Glenn…Donna. Thats where I had it. When the phone finally rang with Dr. T on the line, I hoped that a winner would be revealed. He was very excited and the news was terrific. A perfect six for six match on the DNA! On the first shot we nailed it! Genetics are very interesting we found out. My six for six identical match had blond hair, blue eyes and a different blood type than I. Dr. Topolsky explained to me that our winner, Glenn, was conceived in such a short amount of time after me that it may have played a large part in the result.

Needless to say, Donna and Lisa were disappointed but nevertheless overjoyed by the outcome. I had a match and was again moving forward. The transplant coordinator would be in touch very soon to set up my appointments for the next two weeks and set the date that I would be admitted to begin the transplant. So much to take in and prepare for. As happy as we all were, I know that Glenn was probably the happiest of us all. He would have the chance to save my life.

Next up: When Your Child Has Cancer.

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Officially a Cancer Patient and a special Ultrasound

It felt good to be home. So thankful for my employees who were taking care of my business. I had no time at this point to focus on anything but the immediate future and what would soon transpire. The business was running well and I had faith in my people.

I called Dr. Topolsky’s office and scheduled my first appointment right away as instructed and would be seen in a few days. The office in Hanahmen Hospital was that of Dr. I Brodsky and Associates and named for Philadelphia Flyer Barry Ashbee who passed from Leukemia during his career. Specifically the ” Philadelphia Flyers Fight For Lives” cancer center. It would become my main health hub for the next 22 years. Hated the traffic though.

The next few days were just a whirlwind of phone calls to and from family, friends, business associates. Insurance companies…you name it. There was no time to pity myself anymore, although the “Why me?” mantra had settled in quite well. “Why me ?”…who knows. Since I was the only one of my lifelong friends who never drank, never smoked, never did drugs, etc,etc. They all vowed to continue with their vices since, well, maybe I hadn’t poisoned my body enough! Thanks!

The waiting room at I. Brodsky on the 15th floor was bustling. Apparently, cancer was a big business. Lori had escorted me on the appointment and we signed in and began filling out mounds of paperwork. After a while I was called back by a nurse to start the process of my first appointment as a cancer patient. First stop the scale…ugh. 185 ok. Next the blood draw seat…Across from the scale. 10 vials of blood later, I’m off to an exam room and a 25 minute wait. Every appointment started with an exam by an Oncology resident and some questions…the same for over twenty years. But this was different. This was my first appointment.

Dr. Dave Topolsky, nice to meet you Mr. Keenan as he shook my hand.. That would change quickly to Dr. Dave or just Dave and of course Jeff or KEEENNANN! He was a phenomenal guy. He was different. Avid rock climber and outdoorsman. Long curly black hair and beard…grateful dead esque. From Northeast Philly. Gave it to you straight. Always..well almost always..upbeat. He laid it out to me quickly. Lots of bloodwork to come.. Your siblings, your parents and anyone else after that if needed. Needed to find a matching donor. ASAP! Dave explained that it was important to move quickly before the disease could advance to the Blast Crisis phase. There was no cure for that. The bone marrow transplant was my only choice to survive. Or not. The transplant had a 50/50 chance of survival during the procedure and a 50/50 chance after. After a long question and answer session,there was the obligatory bone marrow Aspiration. Here we go again. Grab the top of the table as tight as possible, curl your toes at the end of the table…you know the drill. And here it comes…Motherf$@%#@!

That was enough for the first trip. Set up the next appointment, down the elevator. When we made it to the car, I looked at Lors bulging baby bump and I said to my wife that we needed to have an ultrasound done. I needed to find out what was cooking in there so we could unofficially meet and give a name to this child whom I might never get to meet. She agreed to set it up. Another exhausting day. Time to get home and squeeze my sonny boy Nick. Much needed therapy.

Next up: His name is Joseph

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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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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