Month: May 2021

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