Month: March 2021

I knew that this appointment was going to be a doozie. I’m already wrapped like a Cobra ready to strike. So much information to take in along with the infamous bone marrow aspiration. Lost count at this point but whatever. I’m in a bad place. No sleep, horrible stress and losing hope. Get me through this day. I need a little something…a little good news.

I hit the scale…180 lbs. I sat in the blood draw chair and got the usual four to five vials of my B Positive/ 0 Positive blood drawn for my Chimersm, PCR, CBC, Etc…tests. I did the perp walk to a large exam room and assumed the position on the exam table. Now I waited. After a few minutes, a big, husky, young Persian looking Doctor came in. I’d never seen him before and after introducing himself, he let me know that he would be performing my bone marrow aspiration. Well buddy, that would be my decision. Dr. Styler was the only other doctor than Dr. Dave to attempt one before and he absolutely killed me. Dr. Terzian actually performed my very first but I didnt know what to expect at that time. So, Dr. Dave was the man, not this guy. The new doctor told me that Dr. Dave would be delayed and asked if he could begin the process. Ok then. I’ll give you a shot. One shot. I assumed my usual position, curled toes, hands wrapped around the front of the table and clenched teeth. It started out ok but went downhill very quickly. He was definitely a rookie and his inability to pierce my hip bone was getting ugly and beyond painful. I stopped him after the pain became unbearable and requested Dr. Dave immediately. The wait seemed like forever. A huge canula needle impaled halfway into my hip bone. Blood running down my ass and leg and pooling under me. It seemed like forever. He barged in, took over the situation and Dr. Dave finished the job like the pro he was. The nurses cleaned me up and prepared me for my next move to the consult room. New gameplan time.

As I waited for Dr. Dave to clean himself up and gather his thoughts, I languished in the fact that this new resident doctor had rendered me almost immobile and in some major agony that would last for hours and my long drive home. I wasn’t too happy. I was tired. The next conversation I have will determine my outcome. Will I stay or will I go now? What’s my odds Doc? Then came the usual knock on the door. “Keenan.”..

“Well, your white cell count is up to 80k. Highest ever eh”. Thanks for the NOT GREAT news Dave. What’s the plan? ” Ok, there is a new drug called STI-571 or Gleevec that just finished its initial FDA study 1 with great results.” ” Phase 2 starts in June across the country with only about 400 participants being carefully selected to be a part of the study”. “I am in contact with several programs and lead doctors holding the trials around the country trying to get you in one of the study groups”. The only caveat of this study was…that you had to have been unable to have a positive reaction to treatments after using Interferon A injections for six months straight to try to beat back the Leukemia. This meant that I would immediately have to begin injecting myself with this awful drug. Interferon had terrible side effects and only a slight chance of working. I would have to use a special needle to inject the drug into my stomach or thigh every other day. A terrible prerequisite for admission into the FDA trial. But my only chance for survival at this time. I took my first shot right there in the office. A pen like instrument that was simple to use but was still a needle. It burned going in. My six months started right now. Let’s see if we can turn this shit around. Let’s see if we can get in this new FDA program. Let’s see if I might get lucky. Really lucky. Please. I need a break.

Next Up: Interferon A

So, as I was expecting, the results of my bloodwork at the end of the three month wait period were not what we expected. This was the culmination of two Donor Lymphocyte Infusions over a seven month period. The collaboration of all to stop the proliferation of the Leukemia from aggressively attacking my body. A valiant effort that fell far short of expectations. My White Cell counts were rising… Rapidly. Ok, Dr. Dave… Now What?

This failure was very disheartening to me. We were approaching the fourth anniversary of my original diagnosis. It was panic time as far as I was concerned. How could this be possible. I had so much faith in the process, so much faith in my doctors, so much hope in my heart and my mind. There were these two beautiful little boys counting on me to pull through for them. Nicky and Joey were too young to understand the dire situation unfolding before their eyes. It was beyond my comprehension four years ago that I could possibly not see my beloved boys grow up. To be there for them. My Dad was such a positive and guiding influence in my life. He always had my back. Especially now. He always took care of me no matter what the situation. All of my siblings could count on that too. I would emulate that role model. My boys would also be able to count on me no matter what. I was so fortunate to have known this love that my current situation made it all the worse in my mind. As bad as I felt four years ago, I felt ten times worse now. I felt hopeless. I needed to live…not leave.

Dr. Dave had his office call me to set up an appointment for the second week of May. He would need to perform another Bone Marrow aspiration to get a better in depth scenario of the extent of my disease. He also wanted to discuss information he had received about a new drug that was in its first FDA trial. A drug that was showing promising results. A drug that could possibly save my life. At this point, I was up for anything. The window on my world was closing quickly. Aside from this new miracle drug, the only other option to treat me at this point was another Bone Marrow Transplant. I wouldn’t survive a second one. That I knew.

Next Up: The Appointment from Hell

It was now the end of March 2000. I had just reached the end of my second month post my second DLI procedure. The blood and PCR results that were coming in were not very encouraging. This was getting really scary. There were no great answers for the lack of progress. The bottom line was that the standard three month waiting period for a positive reaction for the DLI procedure was only four weeks away and we were going backwards.

Lori and I were planning a vacation to Disney World for August. A chance to get in some away time and since Joey was now going to turn four, he would get his first chance to meet Mickey. This would be my next goal. A family vacation to ease the stress of our current situation. The boys were so excited. This trip to Disney would hopefully be much lighter and happier than the last and we would be staying inside the park. The planning was complete and all that was needed was to get this transplant reignited and my health back on track again.

Dr. Dave was of the opinion that my body needed that one more month, the extra thirty days, to get the full effects of the Donor Lymphocyte Infusion. My marrow would hopefully come around and bounce back. He was holding off on completing the last Chimerism until the full three months had passed. The test that would see if my brothers DNA in my marrow had taken full control of the relapse situation and we were back on track to a full state of remission. The ultimate and most important goal in our plan. I was of the opinion that I was screwed. Everyone around me, my full support system, were holding out hopes for the best for me. I appreciated the support so much. My journey was going on four years now and I was getting very well versed on the results of the various tests that predict the outcome of my treatment. I knew that Dr. Dave was always the optimist. I also know how I felt. How my body was reacting to the procedure or not. I knew in my heart that the next thirty days were going to result in a huge disappointment. The wait would be agonizing. Mentally exhausting. We’ll have to keep the faith though. My beautiful babies need a break. They need their Daddy. Mommy needs a break too. Seriously.

One more thing to do now. Nick loved the boy band N’sync! I was driving down I 95 on a Thursday headed to Sansom street for my weekly jewelry run and LAAA! A billboard showing that the band N’Sync were going to be playing at the Spectrum in South Philadelphia! On Nick’s 6th birthday! March 26th! I called Lor for the ok and then Ticketmaster for two fabulous tickets, center stage! Here we go buddy!

We got dressed up nice and sharp for the show and Nick was lookin good! What an energized crowed of 50,000 insane five year old to fifty year old women and girls we were surrounded by! We were like the only guys around for miles! The concert started with a relatively unknown performer named Pink…yes PINK! SHE WAS AWESOME! Nick was a little uncomfortable with the loud music but hung in there through Pink’s set. It went all downhill from there. N’SYNC hit the stage at a billion decibels. Nick freaked out! I covered his ears with muffs I had brought but that only helped little. He screamed and cried to go home, but for $200 bucks a ticket, that wasn’t happening. After surviving “Bye,bye,bye”, “”It’s gonna be me” and “I want you back”…Justin Timberlake and his crew broke out the tear jerker “This I promise you”. The crowd mellowed and Nick calmed down as the words softly echoed through the crowd.”And I will take you in my arms , and hold you right where you belong, til the day my life is through, this I promise you, this I promise you.” I held him tight to my side as the tears flowed down my face. “Daddy, why are you crying” he said. “I just love you buddy”… I told him and hugged him even tighter. These were the best of times, these were the worst of times. I had a night that would be forever cemented in my heart. And hopefully his too. Happy Birthday Buddy.

Next up: Now What?

Well, all the hopes and prayers and wishing and hoping were for naught. The Donor Lymphocyte Infusion had run it’s course and the Leukemia was running amok throughout my body. January saw weekly trips to the hospital for constant bloodwork and consultation about the next course of treatment. We needed to keep a close watch on how rapidly my white cell count was accelerating. The major issue with CML is that at any instant the disease can progress to what is a called a Blast Crisis. When this occurs, the bone marrow begins to turn out lymphocytes so fast that the immature cells are useless in fighting infection and begin to overwhelm the marrow. Coming back from this situation is rare and ultimately occurs in death. Dr. Dave knew this all too well and planned our next move.

The first week of February, we would return to repeat the DLI. Another full day of my brother Glenn having to go through Pheresis on the machine that would again have to harvest the white cancer free cells from his blood. Kind of rinse and repeat. After the cells were processed, I would be waiting in another room to receive the hopefully life saving infusion. Everything went as planned. It was old hat by now. I felt bad, as usual, for Glenn. It was really uncomfortable for the donor during the procedure and there was always some recuperation needed afterwards. Same for me. This was it though. If this DLI doesn’t work there will not be another. Back to the playbook. Back to the desperation that is fighting cancer and realizing that you might be losing your battle. It really fu@%#ks with your mind. This was a very difficult period for me. I could only try to keep my composure around my family and co-workers and battle on. DLI number two was in the books.

A week had passed since the Infusion and I felt pretty normal. No side effects were evident and my bloodwork results were trending positively. Dr. Dave was somewhat pleased with my first visit back. He was very positive as usual. He always was very positive. His job had to be so stressful. So many souls depending on his every move. The waiting room was always full of patients in various stages of distress. You could classify them by their appearance. You get the picture. The office staff were also very accommodating and compassionate. Their job wasn’t easy either. Dr. Dave gave hope to one and all. Until he couldn’t. For all of the patients he saved there were many he could not. The cycle of life. Here I was again. Depending on his every move, depending on his expertise and depending on him.

Weekly appointments would be my life now for the next two months. There wasn’t much to do but wait and hope for the best. Everything would play out in that time and we will see whether the second time is the charm or we’ll be back to the drawing board. I have to remain positive. Right?

Next up: March On

Married with young kids…New Years festivities were never that crazy given the circumstances. We still had to finish out the Christmas season through New Years Eve. Luckily, our gift returns were always minimal. Sometimes our after holiday sales were great too!

The call came during the middle of the week right before New Years. It wasn’t good news. Dr. Dave seemed sullen as he very technically described the ins and outs of DLI failure. My bloodwork was not great. White cells had climbed at a faster pace and additional Leukemia markers were becoming more agregious. In other words, we had a failure to communicate in the marrow and the cancer was coming back strong again. This New Years will suck. I can’t get a break. I would begin taking the Hydroxyurea again to try to control the white cell count and break the news to everyone that the DLI was a failure. Step up to plan B. Plan B was Plan A all over again. Starting mid January, Glenn and I would repeat the same process step by step. Deja vu. He’s going to be so happy! Not.

So here we were. Celebrating another year. Up until July, I was on top of the world. No worries…all good. Now, back to the grind. I’m going to have to come up with a great resolution this year. How about… I’ll do whatever it takes to stay alive and find that cancer free spot in my life again. That would be good. That’s my resolution. As the ball dropped and the countdown commenced, I hugged my wife and boys tight and gave them big kisses when the clock struck twelve. Some tears fell for sure but our thoughts were always positive.

Our ninth wedding anniversary was coming up on the 29th of February…a leap day wedding. At that point we would be into the second DLI procedure hoping for good news. Fingers crossed!

As I write today, the 28th of February 2021, Lori and I celebrated or 29th wedding anniversary. We dined in covid style and I cooked her Steamed Lobster and grilled Asparagus. Finished with assd cheesecake slices and some hot tea. I hope for our 30th we can celebrate eating Pasta Carbonara in a quaint Italian city near Bologna or Belaggio. She deserves it. Happy Anniversary Honey…Love You.

Next up: Round 2…Lets Go