My 26 Year CML Leukemia Adventure

I realized that as I was navigating the waters of the medical world, the working world, the youth sports world and the friends and family world….relationships were the veins of life. Think about it. You have to cohabitate with your coworkers many hours a day and make things work. Businesses have to run smoothly and depend on a certain amount of trust among employees that can work together to produce a quality product to sell at market. In my instance, excellent relationships between my employees and myself were the key to a successful collaboration and successful business. I strive for that. This cohesive crew, happy crew, would translate to happy clientele and fabulous business. Therefore…excellent relationships with our customers. Our relationships continue to flow happily and generously through our wholesale vendors. So important these relationships were. To bring the finest, prettiest pieces of jewelry to market, our vendors were key. Their input and various styles of jewelry and fine diamonds and gemstones were the cornerstone of my business. I dealt with many to always have a spectacular array of fine jewelry for our customers to choose from. Relationships.

Relationships with young children when teaching them skills in sports like soccer, baseball and ice hockey, especially from a young age, are so fulfilling. Watching these young athletes complete different skill levels and increase their skills week by week is especially exciting to the coach…me! Their faces smiling ear to ear , scoring goals, navigating the bases or the blue line. Fabulous! Relationships with the athletes parents. Tentative to say the least. Expecting so much of their children, and their coaches to get them there. Sometimes an impossible feat but every child got the same treatment and somewhat more attention if needed. Teaching manners, ethics and sportsmanship was paramount to the whole package. And fun. The most important aspect of your job. Work hard, play hard, have fun! Relationships with the parents were always good, bad or ugly. I always tried to keep it good.

The most satisfying relationships that I had were with the huge array of talented and compassionate medical staff who saved my life. The relationship that you have and grow with for a very long time. The doctors, the nurses, the phlebotomists, the techs, the custodial staff, the surgeons, the specialists, the kitchen staff and the administration. They have the responsibility to make you feel safe and secure, alleviate your many anxieties, take care of you pre and post surgery and counsel you when you are just feeling like hell. Kudos to them.

The most important relationship you actually have is the one gets you through it all. The one that is there for you when things get bad, get scary, get emotional and get better. The people that show you how much you are loved. That show you that anything can be beaten down…Cancer specifically. Yes…love conquers all. My wife, my boys, my parents, my siblings and friends. My Rocks. Relationships.

The relationship that I had with myself was special too. The battle was still raging. The counts were still all out of whack. The fatigue was debilitating. The relationship with myself…tiring. Mentally exhausting. With all of the relationships that I had going on in my life though? They all had my back. A village of hope and a desire of all..to help me succeed.

What more could a guy ask for!

Relationships….I had the best.

Next Up: The Next Phase- Remission

As I listen to the sounds of fireworks all around me, I remember all of the fun 4th of July’s that we had with the boys and our family. I am writing my blog tonight down at the seashore on Long Beach Island. It sounds like World War Three right now. The rockets red glare, bombs bursting in air is in full effect. A glaring difference to last year’s Covid summer. It’s so wonderful to see all of the families celebrating here, the barbecues, the walkers and bike riders, the beach goers and laughter all around. “We’re back America!”

Fade back to spring of 2001. I was beginning to feel alive again. Slowly moving forward everyday on the path of wellness and hematalogic remission. Before my body began to betray me again following my second Doner Lymphocyte Infusion a year ago, I was able to take Joseph out on the ice for his first ice skating lesson. He was three and a half years old and ever so eager to get out there. Hell, he was just in nursery school. I bought him a hockey helmet and some warm gloves and off we went. I rented him figure skates to start, just to see how it would play out. He loved it! After the usual boards grabbing, getting his legs, warm up, off he went. We had such a great time. Joe was a natural. This was the first and last time for a while though. I was going down hill very fast and the Interferon was debilitating me. You know the story.

Joe was now four and a half and raring to go. I started picking him up at his pre-k around noon every Wednesday, taking him to the Face Off Circle arena. He was totally outfitted in a complete set of Hockey equipment, hockey skates, pants, gloves, shin pads, stick, etc, with an attitude to seal the deal. The kid had mounds of confidence. Lookout big guys, here I come. I literally dropped him through the door of the boards and said good luck buddy! Baptism by fire. Get out there, stay low, don’t skate in front of or behind the net. Missiles were flying everywhere. A couple weeks in, he was participating in scrimmages with the men out there! I had his back though. He was not even five years old yet. They loved him though and took care of him too. This was the beginning of Joe’s love for the game of Hockey. And my resurgence into coaching. I had boys. All guys want boys. Especially sports guys.

We lived in Upper Moreland Township at the time. A big sports town. Their baseball complex was among the best you would ever see! I was fortunate to coach Nick and Joe in Soccer and Baseball for many seasons, Hockey at our local arena- The Wintersports Royals and the Upper Moreland Middle school hockey team. I enjoyed so much the relationships that I formed with all of the young boys and girls that I was so fortunate to coach. I always felt great when they called me “Coach”. I always took my job seriously and my goal was to teach sportsmanship , skills and humility. Work hard, play hard, play fair and win. Life lessons. Also had to play the politics too. They were the worst part of being a coach. I played the game though. Never a dull moment. I’ll get into some ” You won’t believe this shit” moments, later. But for now, times were great. Gleevec was doing its job. I had both of my boys on the ice. Nick was becoming a smooth skater. Joe was tearing it up. I was in my glory…. and life was getting better. Day by day.

Next up: Relationships

I was a few months into the non FDA administration of my new miracle cancer drug Gleevec. The side effects were harsh as expected but the expected outcome of success at a gradual pace made it worth the while. I was making bi- monthly treks down to the city to see Dr. Dave for bloodwork and general examination. Even though the trial was over, Gleevec patients needed to be closely monitored for any severe side effects and to make sure our responses were consistent. At last, there were no more bone marrow aspirations. Thank God. My hips were permanently scarred by so many deep intrusions into my bone. I knew that there were more to come at some point but a break from the action was well deserved, mentally and physically. Since patients in the Philadelphia area that were taking Gleevec were far and few between, remember “rare” cancer, information about other patients in the same realm was hard to share. Information about dosages, side effects, outcomes and general discussions by contemporaries were non existent.

Most Leukemia patients at the time of my diagnosis would get up to date information about their disease through a small international website called CML BY ANJANA. A young Indian woman had started this very informational chat site to learn all that she could learn about CML and ascertain information about the cancer. Anjana, herself a scientist, was having her own crisis as her husband was diagnosed with CML himself. Her site was amazing. Informative, insightful and compassionate, Anjana would answer and break down any questions for anyone who needed useful information about the disease. I myself used her site often and followed along with the chat. So much information could be found about our cancer. A collaboration of ill people seeking answers and dishing out love and well wishes along with hope and civility.

Through the website, I received an email from a gentleman named David W. He was a CML patient who lived in the Philadelphia area and was in search of other like people who were currently taking Gleevec. He had recently been diagnosed with CML and immediately began a regimen of the newly approved drug. His desire was to find a few recipients of the drug who might want to get together for dinner and discuss our similarities and exchange conversation about our experiences with CML and Gleevec. The first Philadelphia Chapter CML Club was born. Dave and I along with three other woman recently diagnosed met at an Asian Fusion style restaurant in Center City Philadelphia. The conversation was deep and very scientific. After the usual pleasantries and introductions we delved deeply into our stories, our situations, our medications, our side effects and our outcomes. I was the only person in the group to have been diagnosed pre- Gleevec and had suffered through years of medical torture, multiple aspirations and a bone marrow transplant. The main gist of our conversation was that we all were responding to the drug. We agreed to meet again after a three hour soiree and followed up at one of the women’s homes as our second spot. The meetings continued every third month and as our numbers grew, we needed to find a venue large enough to hold the many other new patients joining the club. After about eight months, the Leukemia/ Lymphoma Society of America became our new meeting place. The huge LLS building near the Philadelphia Airport would accommodate our crowd along with a Chapter nurse and LLS administrator to proctor and answer technical medical questions…. much better. My participation began to wane after a while. Being an original founder, I needed a break. I was on the road to recovery. The club had so many new members who needed a lot of care. And hope. It was dragging me down. I needed to turn the page and handle my own recovery. I wasn’t being selfish. I was just the longest diagnosed patient there. I’d been through so much more. I was still not in remission and still not seeing that light at the end of the tunnel. I left the last meeting that I would attend with only well wishes for all and never looked back. I was looking for that light and had all the information I needed. My philanthropy had not ended though. I owed much more. Much more.

Next Up: The Beginning

Before we delve into the scientific origins of and the mechanics of the drug named Gleevec, let’s review the diagnosis of CML-Chronic Mylogenous Leukemia. CML is defined as a rare, slowly progressing blood cell cancer that begins in the Bone Marrow. A genetic change in the body’s Myeloid cells caused by a mutation that forms an abnormal gene called the BCR-ABL gene begins turning cells into CML cells. Most people diagnosed with CML have an abnormal chromosome in their DNA called the Philadelphia Chromosome. With CML, the patients Leukemic cells grow and divide rapidly, building up in the Bone Marrow and spilling over into the blood. These cells are very immature and are not suitable for fighting infection. Once the population of these cells become uncontrollable, they can spill into other organs and keep other cells in the body from working properly. Without treatment a patients immune system becomes overtly compromised and eventually enters the phase called a Blast Crisis from which recovery is rare and death inevitable. This cycle untreated can last anywhere from one to four years after diagnoses before succumbing to the Cancer. Past treatments included the drugs Hydroxyurea and Interferon, Chemotherapeutic treatment and eventually a Bone Marrow Transplant. Until the early 1990’s when the Bone Marrow Transplant began to be widely used, other treatments were not curative. Still, Bone Marrow Transplants were not a slam dunk. Patients had a 50/50 chance of making it through the transplant and then a 50/50 chance of it being a cure. Until Gleevec.

In 1996, the year that I was originally diagnosed with CML, a doctor named Brian Druker partnered with the drug company Novartis to test compounds that Novartis had been creating called “Tyrosine Kinase Inhibitors”. These compounds were created to stop the uninhibited growth of the proteins that trigger the CML cells to divide uncontrollably. The proliferation of these Tyrosine kinase proteins causes the overproduction and accumulation of immature white blood cells, the hallmark of CML. After 30 years of scientific research, Dr. Druker focused on one particular compound that would eventually become STI-571. In the first targeted FDA trial of STI-571 conducted in 1999, 31 patients were enrolled and 31 out of 31 experienced complete remission. This was virtually unheard of. Being well tolerated, the drug entered a second phase that showed the same results as Phase 1. I was luckily a recipient of STI-571 in the second phase. This would save my life. As I stated in my last blog, the drug would go on to be one of the fastest drugs ever approved for general use to the public. I entered the trial in October of 2000 and the drug was approved by the FDA in April of 2001.

As far as I am concerned, Dr. Brian Drucker is deserving the title of American Hero. His dedication for so many years to the search for a cure to this devastating cancer has saved thousands of lives and relieved so many, the hardships of the devastating treatments needed to survive CML. Now, the frontline treatment for treating the disease is compromised of simply digesting one or two pills a day, side effects withstanding. The discovery of Gleevec has subsequently led to the development of additional stronger Kinase Inhibitors that are used for patients not able to achieve a lasting remission on Gleevec.

Gleevec is indeed a miracle drug. It has made me a living miracle. I owe my life to Dr. Druker and his team as well as my other Doctors, especially Dr. Dave. To this day, I can email or call Dr Druker in Portland, Oregon and he will get back to me personally and quickly. Unbelievable.

Next up: The Philadelphia Chapter of the CML Club

So I was ending the fourth month of my new treatment. The drug labeled STI-571 was working well at this point. I was laboring along with side effects that were very evident yet expected. Night sweats, upset stomach, fatigue, rash, bowel issues and bad reflux. As the drug worked its magic, systematically eliminating the production of new Leukemic cells, I gradually responded to the therapy. My White blood cell count was gradually reducing and my other counts like my Red cells, Hemoglobin and Platelets were dropping lower as well. Collateral damage Dr. Topolsky called it. My midterm appointment with Dr. Dave was so emotional and uplifting for both of us. We worked together for so long and so hard to defeat this animal. We were finally winning. He was so happy. “I told you.Keenan”..”You ain’t dying”. Bad grammer and all, he nailed it!

My next stop that week was JHUH. Dr. Miller was very upbeat and happy to see me. “Jeff, your counts are great!”. This “shit” WAS really good! After drawing blood and hitting the Aspiration table for another round of Shish Kabob by the death princess, I would again receive a transfusion of Platelets and Hemoglobin. Just a pump me up for the week to come. Dr. Miller said that hopefully this would be the last time that I would need them. Hopefully. I would now only have to come once a month to Baltimore to see her but in between a visit for a regular blood draw at Hahnemann. There’s that light!…at the end of the tunnel. Such a long freaking tunnel it was.

The next two months went off without a hitch. The spring of 2001 was here and the prospect for a great year was wide open. We repeated the appointments and the protocol as warranted by the FDA and presented my data religiously. As we entered April, I received a call from Dr’s Topolsky and Miller. “Must be big” , I said. The STI-571 drug trial was over! The second trial was halted due to the drug being declared as an emergency use trial drug with immediate distribution to all patients suffering from CML. The drug was working so well that the FDA felt that it had to be approved for general and international use right now. The fastest drug ever approved for general use to the public. One year from the first trial of approximately 65 people and only 8 months into the second trial of approximately 450 patients with CML. The trials were finished. The drug would be available in our Pharmacies within two weeks. The trial nurse gave me just enough drug to hold me over until.i could fill my first prescription. Thirty brown oval pills. 400 mg once a day, every day, at night as usual at the fabulous price of only Ten Thousand Dollars…a month. Yep, that’s only $330.00 per pill. Thank God for insurance!! It would be called “Gleevec”. Yes…”Gleevec”. I’m gonna miss those crabs though!

Next up: So What is Gleevec?

Luckily, the fiscal year at Belaggio Jewelers ended on a great note. The store was up in revenue about ten percent higher than 1999 and xmas returns were far and few between. Always a great relief….returns suck. I did have some time to rest after Christmas between the 25th and the New Years holiday. Well earned days off by all. As far as I was concerned, I was feeling really low. Soooo tired. My visits to Hopkins were now being stretched to monthly visits. The first week in January we would be heading down to JHU hospital, right after new years. The trek began early in January. The weather down in Maryland in January was just so- so and the trek much more treacherous the day we drove down. My Dad and I weathered the storm and frigid cold ready for another round of the STI-571 protocol. We arrived on time and readied to meet with Dr. Miller. She looked at me and immediately took me by herself directly to the Phlebotomist. She knew that I was not well. Blood drawn, we would need a quick response.

The results came back soon and let Dr Miller know that her suspicions were correct. My Hemoglobin result came in very low. The average male has a correct Hemoglobin count of between 14k and 16k. This is the average count I would be shooting for. Not this day. My Hemoglobin count was literally 3k. Extremely low. Susceptible to disease of all kinds and passing out. Hemoglobin oxygenates your blood. It is necessary to maintain normal cell levels for a healthy life. Dr. Miller told my father and I that I would need to stay in the hospital and receive one, maybe two, units of Hemoglobin blood products before I could leave. This is why I was dragging so bad. No energy. Always trying to nap. Hopkins had special units for transfusions. Basically a gurney that you laid on while a thick IV style needle was placed in your arm to receive the blood products. It took about two hours to complete the process. Receive one unit, test the blood, receive the second unit, test the blood. When it was over, the transfusion blood oxyginated my blood to an acceptable level of around 7.5k.

After a short resting period to allow me to get my faculties in order, I was given a reprieve on the scheduled bone marrow aspiration. What a relief! The Phlebotomist had also taken all of the blood needed for my new study and my CBC results were great. WBC count still reducing, red cells a little too low but Hemoglobin acceptable enough to go home. Dr. Miller would need to see me in two weeks again. Sooner than I had hoped. I was told that Dr. Topolsky wanted see me too. I was exhausted but needed a quick stop at O’Bricky’s for some crabs and a Coke. Always makes the trip a little better. There are always ups and downs when being treated for cancer…for Leukemia. There was no choice. Roll with the punches and hope for the best. And sleep. I needed sleep. My Dad would drive me home and after a quick rundown for Lor, I would be hitting my pillow. Better days ahead. They’re definitely coming…Yep.

Next up: Gleevec… the Miracle Drug

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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?