My 26 Year CML Leukemia Adventure

Here we go again. With Thanksgiving in the rear view mirror, Black Friday too, the Christmas season was a full go. The only day off I would have until Christmas Eve would be my trip down I-95 to Baltimore for my last appointment of the year with Dr. Miller and her crew. No need to bore you with the details at this point since the trip was a rinse and repeat, going through the protocol motions. I was very happy to say though that my white cell counts were improving. This reduction in the amount of cells was very encouraging. At this point STI-571 was working! It was a miracle. A Christmas miracle. An amazing, substantial reduction in the count. My PCR results were trending in the right direction too! This was great news all around and none too soon. If the results had not improved much at this point in my treatment, I would most likely be preparing myself for a second Bone Marrow Transplant. After the usual bloodwork and another freaking bone marrow aspiration, I would be on my way back to continue the holiday grind.

Dr Miller had given me explicit instructions. I needed to gauge myself and not push too hard. I was still really tired all of the time and working so many hours was not helping my situation. My Hemoglobin count was still very low. Neutrophils too. While the drug was working so well, it was hammering my good cells, leaving me wide open to infection. Dr. Miller was worried about me contracting a bad virus or Flu since I would be around so many customers. I began wearing a mask again to help keep the germs away. Having to wear a surgical mask all of the time really sucks. Lol. If I only knew. But business was brisk. I would have to suck it up and make sure all of my customers were taken care of as they were accustomed. Like I’ve said before, we are Santa Claus. There is no…”Oops, I can’t deliver”. Never happen. I love my customers.

I couldn’t wait to get through the three weeks to Christmas Eve. This was such an emotional year for my family and the fact that I was responding well to the new drug, well, this was the best Christmas gift we could ever receive. Through it all, I found time to get out and play Santa for the boys. I loved opening their letters to Santa and deciphering the crooked, misspelled toy requests. Nicks letters were always so detailed and always included some type of charitable donation. He was so sweet. When the clock hit five on the 24th and we were all cleaned up, I locked the door, loaded up the car and headed home. So thankful that business was good, every customer was very happy and I had the strength to finish out the season. Kudos to my employees, fabulous as usual. Everyone would be waiting for me to arrive home to eat dinner. The appetizers were mostly gone by the time I got home. I was used to that. Lor always made so many great appetizers. It would be a wonderful night. A wonderful Christmas! So much hope entering the New Year. I needed rest though. I pushed it too hard. This would be evident on my next visit to Hopkins. That next appointment, was in the first week of January. So Happy New Year it is… goodbye 2000. Not sad to see you go, for the most part.

Next Up: Transfusion

Today, May, 23rd 2021, I take a break in writing about my cancer journey to acknowledge the 25th anniversary of my Leukemia diagnosis. May, 23rd 1996 was one of the worst days of my life. The day that you hear those three words, “You Have Cancer”, will be the day that defines the rest of your life. After so many years surviving the disease that is Leukemia, I look upon this adventure as more of an awakening. Having so many ups and downs over this long period of time has opened my eyes to extremes that so many may never appreciate…or would want to. Extremes of pain, endurance, sadness, happiness, accomplishment and defeat. Extremes of every imaginable physical and emotional degree. Especially, Love. You will appreciate and hold close every ounce of love you have to give and are given in return. Every kiss, every hug, every smile and every milestone is special when you are a cancer patient. Especially with your children. Silent tears triggered by almost any thought, smell, song, whatever, become the norm. It may not show a lot, but know that everyone who experiences the trauma of cancer, especially those who have fought through a difficult battle or those whom eventually succumb, cherished life’s every moment. Every moment.

I want to thank everyone. My Wife, My Boys, My Brother, My Parents, My Sisters, My Family, My Friends, My Coworkers, My Doctors, Nurses, Customers and everyone who has helped me survive and thrive along the way. I couldn’t have made it without you all. I hope that everyone who reads my blog becomes enlightened by the journey one takes when fighting Leukemia. Every cancer journey is not the same but equally important. Since beginning my blog, so many readers have opened up to me about their own diagnosis or a family members journey. My story is just one of so many. I appreciate your readership. I began writing Survivingcmlnow.com one year ago. A diversion from the horrible reality, loss and seclusion we were experiencing with Covid 19. A self induced form of therapy after so many years of keeping everything inside of me. It has been an insightful and emotional experience. I have a long way to go, a lot of story left to tell. My hopes are to be able to finish on a good note.

But numbers matter. Survival matters. 25 years managing cancer is a long time. An added lifetime for me. Lori and I will celebrate 30 years of marriage in February. I watched Nick turn 27 in March and will see Joe turn 25 in September. And myself…60 this September. Milestones I once thought, twice thought, three and four times thought, I would never see. It may be selfish to say, I am wishing for many more milestones and memories. I have lost so many family members, friends and customers to cancer. Many are fighting right now. I am blessed to have made it this far. In a fast forward, spoiler moment, yes please keep reading and “enjoying” my blog, my current situation has been again tentative to say the least. With a third relapse in 2019, new medication, new side effects and trips to the U of P Abramson Cancer Center…every three months…the battle continues. My life. You’d never know. KEEP READING! My blog continues next week!

Love to All…Jeff

Next Up: Christmas 2000

We were entering the month of November and my fourth appointment at Johns Hopkins. I was tired. Very tired. What else is new? My holiday season at the store was coming quickly and as you know, Christmas is the make it or break it time of year for Jewelers. My crew was holding the line and prepared for the holiday rush. Thank God for that. This new drug was making me sluggish. I needed some answers from Dr. Miller.

My appointment would go off as usual. My Dad will take the ride with me again and be my wing man for the day. He didn’t mind. He got to be the first one to see my newest test results and those crabs…OMG! We met with Dr. Miller first as usual and I answered her FDA standard trial questions to the best of my ability. Now, my turn. What is going on? Is this degree of fatigue normal on STI-571? Are my counts improving? Will I be able to work like I need to during the holiday rush or will the fatigue get worse as the trial moves on? Her answers were informative and compassionate. Yes, fatigue is a very normal and specific side effect of the drug. Most, if not all, patients participating in the trial experienced fatigue. Plus, water retention, achy joints and muscle cramps, upset stomach and bowel issues. Pretty much summed it up. Yes, your bloodwork and cellular studies again are trending in the right direction. White Cell count was dropping, PCR test was trending more negative and my neutrophils and Hemoglobin were crashing. Dr. Miller explained that the STI-571 was destroying the Leukemic cells which were of the majority in my marrow. As those cells were depleted, my blood became Neutropenic while new cells were growing back. Fighting infection would be a problem. In addition, the low Hemoglobin was making me very anemic. Hence, the fatigue. And maybe…her answers basically summed up the answer to the last question. It would be very difficult for me to maintain a ten hour day, twenty eight days in a row. No breaks and no mercy. We’ll see how it goes. I will see Dr. Miller one more time before the onslaught and then not again until after the New year.

With the knowledge needed to move on to the next phase of my appointment, it was off to the Phlebotomist and then the Queen of Pain…UGH. Whatever it takes…O’Bricky’s is waiting. This was a positive day. I could see some daylight. Regardless the side effects, the saying goes…”No pain, No gain”. I can only wish that the pain would end someday. That the future was mine. A proverbial light at the end of the tunnel. That the science prevails and I get to see my boys grow up. As repetitive and dramatic as I may sound, I truly hope that you never have to walk in my shoes. Just saying.

Next up: A Pause

Life is a beautiful thing. I knew this. After I was diagnosed with Leukemia, I couldn’t hurt a fly. Seriously. Literally. Life was so precious to me. Unless it was for food, my sentiments made it impossible to hurt any living creature. Flies, ants, spiders, you name it. The thought of squashing even the tiniest of bugs killed me. I couldn’t imagine hunting for sport. Sunrises, sunsets, thunder storms, snowstorms all welcomed as daily miracles. My children… well, they were the world to me. I’m sure that all of those affected by cancer can agree. Especially if you’ve experienced relapse and the constant threat of your own demise. Today would be a big day. Cancer wasn’t going to be squashing me.

Lori would be accompanying me for the first time to JHU and we decided to drive down to Baltimore the night before my third appointment. I hadn’t received any call over the last two weeks about my results from the last appointment. I was so looking forward to those results. Hoping for something positive. We got a needed alone break for a night and Lor got a day off from work. The day would mirror the same as the last two trips to JHU, visit with Dr. Miller, bloodwork, bone marrow aspiration and lunch at O’Bricky’s. We just need some good results.

The moment that I had been waiting for was here. After arriving for my appointment around 10 am., Lori and I were escorted to Dr. Miller’s office for our bi-weekly consult. It went well. My WBC count came down a little bit, my cytogenics showed a little improvement and my PCR results were trending somewhat positive. Hallelujah! Was I out of the woods yet? By no means, but Dr. Miller was excited. These results were on par with other patients that had been in the first trial or currently were in the 2nd phase trial of STI-571. Encouraging news was everything that I needed to hear at this point. I was so drained. Dr. Miller explained that the drug started to eliminate the Leukemic cells in my marrow. Since the bad cells were overwhelmeing the good cells in my marrow at this point, killing them off would leave me neutropenic or unable to fight infection until the trend reversed itself. My Hemoglobin and Platelets would also trend very low as the drug did its job. We would have to monitor these anomalies very carefully and react as needed. Isolation, infusions of blood and platelets, special drugs to build up my Lymphocytes and antibiotics. Just more fun, fun ,fun!

Our meeting went well and I was off to the torture chambers. Today would be different though. Lori was invited into the Bone Aspiration Unit to accompany me during the process. Never before in the last four years has anyone in my family ever witnessed the doctors performing the procedure on me. She accepted the invite and we waited in the office waiting room for my turn. It went all downhill from there. Two young ladies were escorted into each of the two rooms to have their first time Aspirations done for whatever diagnosis afflicting them. A very slight Asian woman and a younger teen were up to bat. It started out quietly as the crescendo built up loudly and rapidly. The screams from both rooms were loud and blood curdling. A very disconcerting symphony. It was bad. My wife was having second thoughts about joining me when it was my turn. We were asked by the techs to grab a cup of coffee or something. My procedure would be delayed as they would need to sedate these patients and it would be a while before my turn. I understood. I felt bad. The first time, hell anytime, was terrible as far as this thing was concerned. The phrase ” this sucks” always prefaced every time that I laid on that table awaiting my fate and that humongous needle. We adjourned to the Cafe to wait on our call to join in the festivities. I wish that I could be sedated when it was my turn. No such luck. I’m a tough guy.

When the time had come to hit the table Lor was given a chair to sit on near the top of the gurney next to my head. I personally had never witnessed the procedure since I was always positioned in a way such that watching the process was not possible. Lori had a front row view. The Platinum blond tech, my favorite, explained the procedure to Lori and walked her through it step by step. First the small novacaine injection to numb the surface area. Then the long Lidocaine needles that numbed the surface of the bone. I could see Lors face the entire time. Slight discomfort during the second needles as the tech gently tapped on the end of the needle to help penetrate the bone. Now the diamond tipped awl. As the awl penetrates the skin, the large hole it creates, causes a large amount of blood to begin running down your back and leg. It’s always cool and wet. Lors discomfort began escalating quickly as the faces that she made were very telling. It was almost fun watching. As the tech bore down harder and harder on my hip, twisting and turning the needle, her grimaces became more intense. Hey, I wasn’t having the greatest of time either! POP!! She pierced the bone. Now we draw the marrow out. Like sucking thick bloody mucus through a tiny straw. And the pain. Oh, the pain. No anesthetic there. Lori’s face was contorted at this point and she finally turned away. I think I noticed a tear running down her cheek. It had to be hard to watch. We finished up. I got cleaned up, bandaged, dressed and was given a few minutes to collect myself. I could tell that Lori felt my pain. She said that she just felt so bad, not realizing how traumatic the experience actually was. How painful it actually was. I could tell her time after time about that pain but unless you actually witness it, you can’t imagine. I would always tell all of the student docs monitoring the procedure that they really needed to experience an Aspiration on themselves. To feel for the patients that they will treat. No one ever obliged. They looked at me like I was crazy!

We got the hell out of there. Two more weeks we’ll be back though. Now off to O’Bricky’s! It was Lors turn to be in discomfort now. I married a butchers daughter. Seafood rarely graced the table of the New York Peduzzi household. The meats were glorious…. but seafood?? Rarely. She found something to eat though. Her go to shrimp po boy. Usually the extent of her seafood palate. I watched as the half dozen hardshells dropped in front of me steaming away while the old bay gave off that familiar sweet and spicy aroma. With the sores in my mouth improving every week, the taste of the crabs were even more glorious. I’ll see you in two more weeks Baltimore. Can’t wait!

Next up: Is Fatigue a Side Effect?

The trial nurse at John’s Hopkins told me to keep my STI-571 pills in the refrigerator. Interesting I thought, but whatever means necessary. Who was I to question her. Cold pills it is. Also, I would take one 400 mg. pill everyday. My choice would be to take it before bedtime. At this point, because I was enrolled in the FDA trial, the drug would be given to me at no cost. This would last for the term of the trial. The regular price of STI-571 would be approximately ten thousand dollars per month when and if approved for regular use. A tremendous amount of money. The cost of saving lives I guess.

I began taking the drug as prescribed and hoped for the best. I knew that the effects on my Leukemia would not be immediate. I was beginning to feel some relief after discontinuing the Interferon injections. The side effects so severe that they had basically crippled me and severely affected my quality of life. The change from injections to pills was so sweet. After two weeks, I will be heading down I95 to Baltimore for my second appointment. Will there be any significant change in my blood? Let’s hope so.

We scheduled my appointment for a little later in the morning at JHU hospital so an overnight stay wouldn’t be necessary. My dad picked me up in the morning and we headed south for what I hoped would be a positive experience. Other than the fact that I would be receiving another Bone Marrow aspiration today, a reduction even ever so slightly in my WBC count would be so encouraging. If not, well, that would really suck. The traffic was heavy as usual along the 95 corridor but we made my appointment without any issue. Dr. Miller met with us first and we discussed any issues that I might be having with the drug. So far, so good. The residual effects of the Interferon were still present so there was no real difference in how I had been feeling. She also was welcoming any change in my status that was positive after our last meeting. She said that the bloodwork and aspiration results taken during my first visit confirmed that my Leukemia was progressing rapidly. She was anxious to complete the same studies again. So was I. Imagine, I actually was looking forward to another Bone Marrow aspiration. Mmm… not really. Let’s go.

JHU hospital had their own department for Bone Marrow Aspiration procedures. They did so many, I assumed, that it was necessary to facilitate the patients with this luxury. And relieve the doctors from having to perform them. After a quick trip to the phlebotomist chair, we made our way to the Aspiration department. The tech that was to perform my aspiration was a very tall woman with short platinum Grey colored hair. Although I don’t remember her name, we became well acquainted after the many times that I laid on her table. I always thought about how she felt just constantly inflicting pain on people everyday. What a job! She was good though. A real professional. Her experience made it somewhat easier, knowing that she really knew her stuff. Compassionate also. Here we go again. You know the routine. It never changes.

After a couple of hours, my visit was complete and the anxious period would begin. Now we would wait for the call from Dr. Miller for the results. Usually about ten days. Just before we would be heading back down again to repeat the process. Limping to the car, I knew that the pain in my back would be an afterthought. The pain in my mouth would be taking over as soon as I began consuming the Old Bay smothered crabs that were waiting for me at O’Bricky’s. The sores, still in my mouth from the Interferon, were no match for the taste of those delectable crustaceans. The taste was worth the pain. Just like the Aspiration today. You weigh the good with the bad. Crabs are good. Leukemia bad. Just get me the results…Please.

Next up: Results, Crabs and Lor’s Turn

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