Month: April 2021

This was it. Everything we had been wishing for for the last six months was about to to come true. The call came in from Dr. Miller’s office and I would be making the trip to Baltimore in the next two weeks. The famous Johns Hopkins University Cancer Center was waiting for me with open arms. My current situation had me feeling pretty bad. My last CBC bloodwork showed that my white cell count was beyond acceptable limits and rising quickly. I was so tired. I looked like shit. My appointment couldn’t come quick enough.

We made plans to drive down to Baltimore the night prior to my appointment and stay at the Sheraton hotel near the Chesapeake Bay waterfront. My appointment was at nine am in the morning and I didn’t want to be late. My Dad would be accompanying me on the first trip. He was so worried. He had discussed with me about his concerns before I had my Bone Marrow Transplant a few years earlier. He thought that maybe I should wait to see if other opportunities would present themselves while remaining on the current therapies available like the Hydroxyurea that I was taking. Wait for a less drastic procedure. A safer option. There wasn’t time then to do that. We had to move quickly. Now, on our drive down to Hopkins he wondered if I should or could wait a little longer and let others be the Guinea pigs for a while. Lol. Again, time was of the essence. I didn’t have the luxury of another minute to wait. I needed this drug now!

I had never been to Baltimore. An old city style town where the Waterfront and the Orioles baseball stadium were the centerpieces of the city. There was one aspect of our trip that I was so really looking forward to. Our family grew up savoring Blue Claw Crabs. We loved them. Every Friday night, my Dad would pick up a few dozen Steamed Blue claws at Walt’s Bar on Oxford Circle on the Roosevelt boulevard in Northeast Philly. You could smell the Old Bay when he walked in. We always had a great time with neighbors, cousins, friends, etc. ,Whomever. It was always open house, just rsvp so there were enough Crabs to go around. Pretzels, pickles, beer and soda finished off the menu. It was good times. Baltimore was famous for the crusty crustacean. Supposedly the best on Earth! If we were going to be in Baltimore, we were gonna have crabs. What a bonus! Get to save my life and eat my favorite food! Let’s Get it!

We reached the hotel around 5 pm and grabbed a bite to eat. Our conversation during the 3 hour ride centered around the science of what was the drug STI-571 and the hopes of what the study would accomplish. Being chosen to participate in a FDA drug trial is a big thing. This was no blind study. No placebos involved. This we knew already. So many sick people. Their lives teetering on the wire, like mine. No games. It worked and you live. It doesn’t and it’s over. How comforting was that. It better work. I was pretty nervous as was my Dad so we tried to turn in early. There wasn’t going to be much sleep tonight.

Morning light finally shone through the blinds and we got ready to go. The directions had us driving through some nefarious areas. Hopkins had been there many years. We reached the hospital finally. It seemed like I couldn’t get there fast enough. We parked the car, and made our way to the Cancer Center offices. The campus was enormous. Dr. Miller greeted us and invited us into her office. The pleasantries were short as she was very busy, but she reviewed my situation, as grave as it was, and welcomed me to the trial. She was a very big fan of Dr. Dave. Apparantly everyone was. Dr. Miller explained that my car would soon know its way very well to Hopkins. I would be a very frequent visitor. Beginning with visits every two weeks for two months and then monthly visits for an additional three months. That was a minimum. Each visit would include a Bone Marrow Aspiration, extensive bloodwork and consultation. Lucky me. Those were the terms. After signing a very large amount of papers that were necessary to continue with the program, I was led to an exam room to begin the regimen. Physical exam, bloodwork, more questions, the Bone Marrow Aspiration department, yes they had a dedicated department, and my final dosage instructions. And oh yes, did I have any questions? Hell yeah! Is it going to work??? The study nurse produced a brown paper bag with a brown bottle of pills. She simply answered my question with a smile and this line…” Don’t worry bud, This is Good Shit!” What else could I ask for.

I limped out of the hospital while my dad got the car. It was just after lunch time and I knew our next destination. A tiny street near the hospital where a highly recommended crab restaurant named O’Bricky’s resided. A small door in a brick row style building and a small sign hanging over it. The smell was glorious. The tables covered with brown paper and wooden mallets. The crabs were served Dirty, covered in Old Bay and waiting to be devoured. As we dug in my dad asked me how they tasted. My answer…” This is good shit”. A fitting answer and end to a crazy, painful, hopeful and blessed day. We hit the road with my bag of gold. Those pills were my hope for the future. The hope for A future. I would take my first dose that evening. Then kiss my boys and my wife. And wait. Wait for a miracle. I needed a miracle.

Next up: So Here We Go!

August ended with no relief in sight. The constant thought in my mind was that my birthday in the beginning of September may be my last. I would be thirty nine years old. We usually would spend my birthday celebrating with family down at the Jersey shore. It usually fell on Labor day weekend or the first day of school every year. Not the happiest of Birthdays, I really don’t remember much of the day, I’m sure everyone did their best to make it special, but deep inside, I wasn’t much for celebrating. Yes, emotionally, I was a wreck and preparing for the worst. Dr. Dave told me at my last appointment, a few days prior, that if there was no answer soon on the FDA study that we would be having to attempt another Bone Marrow Transplant. Most likely by the end of October. My Leukemia was progressing rapidly and things were getting desperate. I couldn’t take the Interferon injections much more. My quality of life on the drug was just not worth it anymore. It was doing nothing for me. Dr Dave knew this all too well.

I knew the impact of my condition was weighing on my family heavily. Anticipating the possibility, no, the reality, of my demise. My boys couldn’t help but see how I was failing. They were so great though. They kept me going through it all. The antics and actions of two little boys I loved so much helped me smile through the pain. So innocent. They were my best medicine. Lori kept fighting through it all. Immersed in handling everything the best she could. My Dad kept up the calls and letters push to anyone and everyone he thought might give me an edge to entry into the study. My Mom had a different angle. She went with her heart and her gut. She had fought her own cancer battle. She knew the deal. She had faith in the process and knew that I would be ok. She would reiterate that faith to my father and to me and to our family. Consistently. Dr. Dave…he knew it too. Remember… he told me so.

By mid September, I was taken off of the Interferon. Dr. Dave saw no benefit anymore, just agony. The prerequisites for admission into the study were that a candidate would have received Interferon for six months without any response or reduction in their Leukemia. I only lasted less than five months before I couldn’t take it anymore. This worried me so much. Would I be ineligible now? No matter. The call came in a few days later. Dr. Dave received word from his long time colleague, Dr. Carol Miller. Dave had been blowing up Dr. Miller’s phone for months. Constantly contacting her with pleas for my entry into her group. His last plea worked. He told her that she was my last hope. That the Interferon was useless and harming me too much. That I had two little boys that were going to lose their Dad. That I had suffered too much and he really needed a favor here. I guess she caved. She only had so many spots available. So many requests. I would be receiving a call from Johns Hopkins University Cancer Center in Baltimore shortly. My Mom was right. Keep the faith. I was in. The Miracle drug was in reach. I just hugged my wife and my boys. And yep, I cried. A lot.

Next up: This is Good Shit

When we returned from Disney and the horrible heat, we needed a vacation from our vacation! I was so happy though that the boys had a great time. For their ages, six and four, they were pretty wise to the situation at hand. Wise beyond their years from watching their Daddy go through so much pain and trips to the hospital, emergency rooms, etc. Sad to say, but they were used to it.

I knew it wouldn’t be long until I would need to be back in the ER or an extended hospital stay. I was losing so much weight because of the awful sores that were overwhelming the insides of my mouth. Every piece of food felt like sharp shards of glass eviscerating the linings of my cheeks. Pusy, bloody, beyond painful, the mouth washes and antidotes meant to ease the pain were useless. Even drinking fluids was a nightmare. I was dehydrated, sullen and falling apart. My body was in a state of perpetual Interferon flu. Headaches, stomach upset, hair falling out and terrible diarrhea. I lasted about three more days until I actually collapsed and was rushed to the ER in a state of delirium and intense pain. I needed IV fluids right away along with painkillers for my mouth and head. After I was stabilized they had to transfer me from Abington hospital to my homebase Hanahmen. Dr. Dave couldn’t wait to see me. I was a freaking mess.

It was time for a very serious conversation. The Interferon was not working for me. Rather than help me it was hurting me. There was no sign of change in my disease status and my white cell counts were out of control. Approaching 200k the CBC hit a new record for me. Another Bone Marrow aspiration was scheduled immediately to check the Blast situation. We were getting so close to the end of the line. I asked Dr. Dave in a very emotional state,”Am I going to Die?” He looked at me, staring at me and processing my question. He put his hands on my shoulders, looked me in the eye, and said..”I Promise, I Am Not Going To Let You Die…You Have My Word”. This was some serious shit. No big smile, no uppity attitude and no bullshit. Serious, sincere and heart felt. It was really what I needed to hear. He gave me some strong stuff so I could sleep. Tomorrow was a big day.

I was being fed through a tube at this point while loads of antibiotics were being administered to fight the Thrush and sores in my mouth and get me stronger. My morning doctor visit was amazing! Nick and Joe came in dressed in caps, gowns and masks, announcing themselves as my doctors for the day. I really needed that. I hated for them to see me like the state I was in but sadly they were used to it. They were there to make me better. They did a wonderful job. It took me over a week to get myself in shape to go home. Still injecting Interferon, still waiting for the Golden Ticket, still full of hope. I knew how bad the situation was. I’d seen the downward spiral of Leukemia patients in their last few months. It was a horrible scene. Would this new drug save me? Please, please, please… I can’t take much more.

Next Up: Great News!

Everyone who has ever been to Florida in July and August knows how oppressive the heat there can be. Everyday, up to 100 degrees and humid. The afternoon thunderstorms last generally a few minutes and cool things down a bit. Just a bit. Our second trip planned to visit Mickey was the first week of August, 2000. When we planned the trip about six months earlier, we hadn’t any idea of what condition I would be in. Hopefully, the DLI treatment would have worked and the trip would be a welcome celebration of good health and happiness. This wasn’t the case though, as you know, and it would be a rough go for me. We needed this trip and my boys needed a break. It was on.

We would be flying into Orlando and staying in Disney at the Grand Floridian hotel for four days and finishing the last three at Aunt Michele’s for a visit. The boys would be flying for the first time and were so excited to see Mickey and Company. Our last trip, if you remember, was so hard. Joey was still in womb and Nick just 2. My diagnoses of Leukemia the day we left put a huge damper on the whole trip. Here we were again. Four years in the future and back in the same boat. And I was sick. Really sick.

The flight was uneventful other than the boys really enjoying the experience. They thought it was so cool. We had a shuttle to the hotel and got to our rooms a tired bunch but ready for fun. It would be a great week! The first day out we enjoyed breakfast with the characters. Nick and Joe loved it. Mickey Mouse pancakes and Whipped cream! Mmm! It was off then to see the sights and ride the rides. After about an hour, the heat started to drain me. I was having fevers daily for a while now and the heat was not helping the situation. I still was having a tough time eating with the awful sores inside my mouth. I had lost a lot of weight too, the Interferon was taking a huge toll on my body. I toughed it out for about three or four hours before we had to go back to the room so I could rest. Dinner would be in another themed restaurant where Joey met his match…the Queen of Hearts! She scared the hell out of him! Pretty funny. We took some family photos and retired early. The next day was like 1000 degrees! The heat and humidity were just too much for me. My memory of that day was of leaning on the double stroller we had rented to help us navigate the boys around the park. The rental stroller was wide, sat two, and luckily, strong enough to carry my body weight. I was thinking, “Please just let me get through this day for my boys”. I was literally passing out behind the stroller. Hanging on for dear life. I couldn’t make it anymore. Lor alerted the Park security who got me to the Disney Park Infirmary as quickly as possible. What else could go wrong. I was dehydrated and weak from the heat and really not up to the task. My condition was deteriorating day by day. They gave me fluids and contacted my doctors in Philly to coordinate and be aware of the situation at hand. This process played out for the next three days. Get up, breakfast, hit the park, do rides, see the sights, hang in as long as possible and head back to the Infirmary for more fluids and medication. Lor and the boys were wonderful. We did our best to have a great time. I felt so bad inside, my grief was well hidden yet overwhelming. I couldn’t stop thinking that this could be our last vacation together. I knew my blood counts were out of control. I knew that the Interferon was just a temporary fix and was not working at all. I had to keep going and give my boys a time with me that they would always remember. “Alright guys…Let’s go have Dinner with Goofy and Pluto”!

Uncle Ed and Aunt Michele picked us up on Thursday morning to head over to Lake Mary to spend the weekend by the pool and let the boys relax with their boys Aj and Max. I would get some much needed rest and a respite from the heat. Lori would get time to hang out with her friends and enjoy a few days of normalcy. She needed that badly. Poor Michele and Ed had to entertain us while we were in a worse situation than the last time we visited. We all made the best of “It is what it is” and enjoyed our time together as did our boys.

It was time to head back. The week went so fast considering all of my issues but I needed to get back home. I had follow up bloodwork that needed to be done and the side effects of the Interferon were getting unbearable. We made the trek back home and I felt so fortunate to have made the trip with my family. Memories that I hope my boys would cherish forever. I still had a ton of fight in me though. It was the fourth month of being on Interferon injections. Two more months to go after August to be eligible for the new drug study. Still no acceptance yet. I’m so scared.

Next Up: Collapse

So my wife mentioned to me that my last few posts have been repetitive. I agree. The period between July of 1999 throughout 2000 had to be one of the most gut wrenching, mentally and physically demanding and heart breaking time of my life. Again. I’m sorry if it just seems like bummer after bummer. It was. Especially after I began injecting the drug Interferon.

Interferon Alpha was the standard treatment for CML, sans a bone marrow transplant, from 1980 to 2000. It was the only drug at the time that had a somewhat positive reaction towards suppressing the cancer. It was no cure for sure but bought precious time for those who would eventually succumb. To be able to become a candidate for the new drug STI- 571-FDA trial in its second phase, you had to have tried the drug Interferon for at least six months with no positive change in the status of your CML.

Dr. Dave was feverishly trying to get me on the list for admittance to the trial. Many others too. My Dad was petitioning business execs, State Senators, you name it to jump on board and make a case for me. Many letters were written and phone calls made. This was crunch time. The hospitals included in the study that was to begin soon were in New York, Houston, Chicago, Baltimore, Seattle, Los Angeles and Boston. Not Philadelphia. It was a mad scramble for life. The last miracle for so many. Including me. But first, before anything, the Interferon injections had to begin. In my last post, my last appointment, I was taught how to use the injection pen. The fat of my stomach or my thigh was the best site to start. Every other day. I quickly became compassionate to the Diabetics of the world. This really sucked. Not only did it really suck to inject yourself, as time went on so did the side effects.

Meanwhile, the results of my bone marrow aspiration, Chimersm and PCR tests were in. The Chimerism showed that my DNA was becoming dominant again over my brothers. This was bad. A full takeover of my own marrow over my donor transplant would accelerate the cancer into what is known as a Blast Crisis. At that point there was no coming back. No cure. No chance. My PCR results were equivalent as well as my marrow biopsy. No good. Disheartening to say the least, this point in my journey was one of the worst. But wait…it just keeps getting worse! The side effects of this drug were awful! I mean terrible! It started with the Nausea. Then the chills. Then the fevers, the mouth sores, the rash, the extreme fatigue and the diarrhea. Relentless.

Month after month through the spring and summer, one month, two months, three months….it didn’t get any better. I was losing weight, strength, hair and hope. And my blood counts? Well, they were climbing at a frenetic pace. 90k…100k…150k. My work. What was that? I could barely get up everyday. I struggled to go into my business every day. I had to be careful of infection too. What was the point of this suffering? Why couldn’t they just let me in the study? I was mentally and physically exhausted beyond the point of all else. You know what though? I was approaching my fourth month…August. Do you think this would stop me from our planned trip to Disney! No Way! Never happen! Nothing was going to stop me from this precious trip with my boys. Especially Interferon.

Next Up: Florida in August