Month: August 2020

The phone on the table next to my bed was very busy every day. Occasional calls from friends and family would keep my mind occupied and entertained. There were many days when I really couldn’t talk and wish the phone wouldn’t ring. But it did.

Owning your own business is a very time consuming, laborious, financially intensive endeavor. Especially a fine jewelry store. I usually worked 70 hours plus a week, seven days at the time. Business was good. I had finally worked my way up from very humble beginnings. My first tiny store, just a front door, no window or bathroom, a virtual shoebox. Broad St. North Philadelphia. It was what I could afford. The rent was cheap. It was my start. It took about four years and another move to N. 5th st. in between for me to make it to the promise land. The Roosevelt Mall ! Starting small again, the rent was much higher than what I was used to, I went all in. Thats what you had to do in business. Again, we outgrew our digs and moved to a larger space after our first year in the mall. Constantly building new stores is a real cash drain but necessary for growth. So was the need for more and more expensive and expansive inventory. That’s the problem in our industry. Keeping the cases full.

It was now my eighth year in business. 1996 was moving in the right direction. Sales were good, my employees were becoming seasoned and gaining experience in a very difficult field. I would tell them that every piece of jewelry was unique. Every piece… a snowflake. Diamonds, gemstones, different metals, tolerances, timepieces, etc. All unique. That it would literally take 50 plus years to even begin to have a small understanding of every facet of our business. The most important thing that I taught my employees was that, above all, every person, every customer, that walked through our door, was your number one priority. To acknowledge the customer immediately and treat them with utmost respect. Integrity, trust, great prices and beautiful inventory built the business. One on one relationships with my customers was so important. We deal with Engagements, Weddings, Birthdays, Anniversaries, New births, Milestones, Graduations….you name it. Generations of families at this point. It’s a special thing. A labor of love.

Behind the scenes it’s crazy. Making sure all of the repairs are perfect and on time. Dealing with multiple lines and vendors. Craftsman and specialty jewelers. Churning out custom engagement rings and bridal jewelry. And especially making sure that that perfect holiday gift was always ready. There was no…”Sorry but Santa couldn’t make it on time!” Never! They say ” No Pressure, No Diamonds”.

“Mr. K…there is no easy way to tell you this…you have Leukemia”. Screw me. My phone rang all day in my bubble. My employees. Questions. All day everyday. I handled what I could. They understood. So did my customers. It was very frustrating for me. It would be a long time before things would be the same. A long time until I would be able to recuperate and assume my full duties. Without the hard work and perseverance of my employees, the financial assistance of my Dad and the dedication of my wife on top of everything else going on, I doubt that Belaggio Jewelers would still be here after 31 years. Thank you all. This was not the end of the story though. Leukemia is not your friend. It’s Relentless.

Next up: Time to Go Home

It had now been five weeks since my admission into the Bone Marrow Unit here at Hahnemann Hospital. It seemed like forever. The freedom to be able to take a shower now was just amazing. I hardly had the strength to get there but with the nurses assistance and a shower seat, it was heaven. Like the one hour out of twenty-four a solitary confinement prisoner gets to exercise. The short walk to the hall shower was very taxing. The biggest issue I had though was getting my gown off and on. The Hickman Catheter and IV tubes were a real pain in the ass! I always spent as much time allowed away from the bubble.

The big blackboard in front of my bed was changing everyday. The positive updates of all of my blood counts incrementally rising was music to my eyes, so they say? Dr. Dave came by as usual and recited the statistics for me with his positive “We’re getting there!” He listened to my lungs, my heart and gave me a visual inspection on his daily rounds. There was the usual army of med students and Oncology residents with him with their questions and remarks. I felt like a test dummy all of the time. Everything was about the stats though. The stats let me know the condition of my marrow and how the DNA was morphing into that of my brother. The stats let me know that sometime soon the blood and platelet transfusions would begin to slow down. The stats would let me know when I would be well enough to be cut loose and be able to go home. The stats were key. The stats enveloped my life at the moment.

So… the day to day continued. Wake up, check out the time on the Inquirer clock tower, watch tv, field the phone calls, try to eat, more bloodwork, try to rest, see Lor, talk to Nicky and oh yeah….get my eyeful of those Baby Back- Baby Back Ribs on the tube! It just doesn’t stop!

Next Up: The Business

September 5th. Sometimes, it’s Labor Day. Sometimes, the first day back to school after summer break. It’s always my birthday. This time it was labor day weekend and my birthday. Thirty five days in the bubble. I have to say that things were finally getting better. I could stomach certain foods like watermelon, honeydoo melon, goldfish crackers and pudding. They didn’t hurt my ulcered mouth or make me overly nauseous. Some good nutrients and fiber for my diet. This was my daily regimen.

This Holiday weekend I learned a lot about the 15th floor nursing staff. I learned to really appreciate their skills, their compassion, their love and their ability to lift up their patients hearts and alleviate their fears. Its a tough job all around. They see suffering and pain and death. They are tougher for it yet treat everyone equally and beautifully. Unless…unless its a holiday weekend.

When you lay in bed for thirty days with contraptions all around you and tubes from IV’s all hooked up to you, you become aware. Aware of everything going in and out of your body. Frequency of drugs. Color of bags, styles of needles and methods and talent. Well…during holiday weekends, your high intensity personnel become ghosts. Its their turn to take a break. Enjoy the beach, their kids, their hobbies, etc., forget all about their poor transplant victims. So what happens to the poor bedridden souls? The trapped in bubbles Leukemia patients? The lost kids?

Well…we get Temps. Temporary nurses. Fillins for a couple of days. Unfamiliar faces taking care of all the menagerie. It’s freaking scary! These nurses are not seasoned Oncology fellows. They are inexperienced grifters. At 2 am the first night a temp entered my bubble. She was carrying like four bags of fluids and rifling through all of my IV lines trying to decide what goes where. With one eye open, I watched in horror as she began to do exactly what she was not supposed to do. I immediately stopped her and asked to speak with the head nurse. The charge nurse came in and chased her out. It could have been ugly. I never slept after that night until Tuesday when the pros came back. And I let them have it.

When Monday came it was Labor day and my birthday. 35 years old. I laid there and wondered if I would make 36? My wife and parents came down along with some friends that came buy. My best two presents were…a beautiful photo of my Nicky. He was holding up a sign, a big smile on his face, that said “Happy Birthday Daddy- I Love You!” Best present ever!!! I also got a great present from Dr. Dave. A shower! The nurses were going to wheelchair me to a seated special shower with an alarm inside in case of emergency. I must have sat in that shower for 4 hours. Absolute heaven. They had to drag me out. I was moving along. I was feeling hopeful. The light was growing brighter. Dont let me fool you though, when it got dark, and it got late and it got lonely…the tears would flow. A lot to handle, too much sometimes.

Next up: The Stats

Last week my father mentioned to me about the excerpt I wrote on platelet and blood donations. He said that he would show me a file that he had kept from the duration of my hospital stay and beyond. I received that file today(08/17/2020) and was amazed at the outpouring of love and support from so many people on my behalf. Remarkable letters of prayer and well wishes from such dignitaries as…Cardinal Keeler of Baltimore, Cardinal John O’Connor of New York, Cardinal Anthony Bevilacqua of Philadelphia, The Vatican Secretary in behalf of Pope John Paul, Ed Snyder and the Philadelphia Flyers organization…and many more. I never knew that these existed. Wow!

In this file were the Guidlines for the Donation of Platelets and Whole Blood for patients during their stay at Hahnemann Hospital. Three to four Platelet transfusions per week and about four to five whole blood transfusions. For every week of my stay, I would need three to four donors…approx.- 24 to 28 donors. Well, the list my dad showed me tonight had 144 potential donors who had volunteered their services. This army of donors collected by my sisters, Lisa and Donna, worked to make sure I had the resources needed to keep me alive. They literally had to turn people away. How great is that! How selfless and compassionate. I was overwhelmed tonight.

I would personally like to thank everyone who donated or offered to donate their blood on my behalf. These are some friends and family who donated in the first week on record….Bill Piszek, Vladik Piszek, Arlene Naids(rip), Mark Oswald, Eric Cutler, Bill and Rick Dunn, Matt Winger, Dave Brecher, Craig and Reesa Ostroff, Michelle Selvaggio. I do not have the records beyond that but thank you to all. You helped save my life. This file also contained the Medical Power of Attorney that I completed with my wife the day before I entered the hospital. Very sobering.

Also included were the many letters my father wrote to elicit prayer and goodwill on my behalf from special religious groups that specialize in the power of prayer and healing. They replied enmass. Anything to help the cause. Thanks Dad….They worked.

Up Next: A Holiday Weekend, My Birthday and a little bit of Freedom

In 1996 we did have cellphones. Primitive as they were, they were a real step up from beepers. Remember them? Anyway, my main mode of communication in the bubble was my push button dialing antique phone. The standard flesh color block of a contraption that blinked for messages and left you tethered to the slinky cord. It did the job. Our cellphones were also just hand held blocks with a dial pad and a digital readout panel for incoming and outgoing calls. Yes, hard to grasp the fact that we had no video screens, Facebook, FaceTime or anything even close to the technology of today.

The communication that I had with Nicky was done through the phone as often as he was up to talking with his daddy. We hadn’t seen each other for a month now. It seemed like forever. I was able to see him through photographs that Lor would bring in taken especially for me. He would be holding signs saying…” I love you Daddy”…”Miss You” and more. I cherished them and they were displayed prominently on my windowsill.

Enter the Videophone. A marvel of modern science, this contraption was a big telephone that had a really small video screen on it. If you had one in your place and someone else had one at their place, you could connect and see each other when you are talking. It was very grainy and often did not work but I was actually able to see live video of my boy! And he could see me! I cant imagine what was going through his mind because I was looking pretty bad. This was a game changer for me though. I was feeling so low at that point, just being able to see his beautiful little face made it all make sense. When you are facing a life or death cancer battle, the most important thing or reason you have to fight “To the death” so they say…is for your children. That bond, that love, between you and your child is the best medicine of all and by far the single greatest motivator to fight that you could ever imagine.

The Videophones were donated to the bone marrow unit by angels who knew that it would lift the patients spirits to new highs. It certainly did for me. Thank you to those benefactors. It was so special. Thank you from the bottom of my heart.

Next Up: My Donors

The morning started out as usual. More bloodwork, more meds, a breakfast that I couldn’t eat. A nurse’s aid would come in to help me get out of bed to try to walk around the ten square foot space available to me. That was rough. Trying to navigate anything with the menagerie of tubes emanating from my chest was a real joy. I would invariably end up on my porta potty trying to move something into the bowl. Between the constipation caused by the Morphine and the total lack of any palatable solid foods, it was a tough sell.

I hadn’t had a shower in almost a month now. Washcloth or sponge baths, as they were called, were the norm and a new toothbrush was supplied everyday along with one of those kidney shaped yellow bowls to spit into. Worse was the constant fight to live with the contraption coming out of my chest. It was heavy and attached to all of the IV tubes delivering all of the meds 24/7. It always pulled at my skin and I would constantly worry about it coming out, even though it was stitched into me. A nurse showed me how to make a lanyard out of the strings of a hospital gown to alleviate the weight and pulling on my chest. It worked pretty well but broke easily and would need to be replaced all of the time. Plus, the area where the catheter entered my aorta had to be constantly cleaned as the wound could become easily infected.

This particular day was going to get worse though. One of the residents stopped in to let me know that Dr. Dave would be in to see me soon. This was a daily ritual but today he was giving me a heads up. It was time for another bone marrow aspiration. Great. I feel like crap. I’m very weak. I can barely eat. And now I’m going to get skewered again. It just doesn’t get any better than this. Here we go again. Assume the position Jeff. Son of a Bitch! It’s another one in the books. Thanks Dr. Dave. I really, really, really, hated that procedure. I think that I had about ten aspirations between my diagnoses in May and my departure from the hospital in September. Unfortunately, there were many more to come.

By the time Lori had finished work and arrived for her daily visit, I was not a pleasure to be around. My mood was changing and not for the better. You get to a point where things just really suck. Even though my numbers were rising and there was a light at the end of the tunnel, I couldn’t see it. I didn’t really want to talk. I missed Nick so much. I was so worried about Lor too. She was nine months pregnant now. She was under so much stress. Coming down to the hospital everyday, working full time, ready to have a baby, and taking care of Nick, OMG! Pressure? I would say so. But I didnt make it any better for her that day. I think that I kind of lost it. Lashed out for no reason. They say ” You only hurt the one’s you love”. Well, I did a good job. It was a short visit. A day that I wish I could erase from history. Like many others recent and many more to come.

Next up: The Videophone

Now you would think that this excerpt would have me lamenting the fact that I missed my little boy. I did…terribly. But it is not. What do you do for twenty four hours a day besides lay in a somewhat comatose state? Well, you sleep the best that you can, especially when nurses are coming in and out of your room every two hours. You can try to converse with the wonderful friends that come to visit you. They mean well but at the time it was so exhausting. I did really appreciate it. The visits at that time were short but sweet. The phone calls that were coming in at the time were fielded by my wife and were also short but sweet. I usually would get a call from my store for a quick briefing or question. They were also wrapped up as soon as possible. I really didn’t have the strength or wherewithal to handle too much. The battle was still raging on in my body and the effects of the chemotherapy, steroids, anti- rejection drugs, etc. were daunting.

So what else do you do? Of course…you watch TV. A lot of TV. And more TV. That’s what you do in the hospital. All day, all night, whenever I was awake. It was white noise. A distraction from the constant pain and monotony. The channels were meager and the content the same. Nothing compared to todays standards. Netflix? I wish. There are many things that can trigger me and the “PTSD”, as I call it, from my time in the unit. One of the biggest is the smell of the antiseptic soap that was in the dispenser by the entrance to my room. So distinct was the smell, that to this day it hits me like a brick to the face if it’s near. The doctors and nurses used it on their hands every time they entered or left my bubble. It is burnt into my olfactory sense like a bad tattoo.

Dr. Dave had given me the OK to start attempting to eat from a very rigid menu. If I felt like eating anything on the menu, I was encouraged to do so. The hospital dietician had stopped by to go over the choices made for me. No fresh grown food, no raw veggies and nothing that could expose me to germs or infection. Very bland and very boring. It didn’t really matter though. The sores in my mouth made eating anything a major chore. And a painful one. I also found out that when I did try to eat anything that chemotherapy destroys your taste buds. Everything tasted like shit! Horrible!

I probably had lost about twenty pounds so far. I was literally starving for something palatable. I wanted to be able to enjoy one delicious morsel of food. A piece of pizza. A donut. A cheesesteak. A hot dog. A hamburger. Some Bar-B-Q ribs. Some what do you say? The second trigger. That freaking Chile’s commercial for their Baby Back Ribs! I must have seen that commercial five hundred times a week! Every hour, every day. An all out media blitz! My mouth would water at the sight of those ribs, burgers and appetizers! I wanted to reach out and grab them from the TV! I wanted to eat! To most the commercial was just a catchy jingle, a call to arms to get to Chile’s to savor those Baby Back Ribs! For the many more years that it aired, when I heard it, it just took me back. An antagonistic mantra drawing my mind back into the bubble.

I Want My Baby Back. Baby Back. I Want My Baby Back,Baby Back. I Want My Baby Back, Baby Back. Like a broken record. Get the picture? You’re singing it in your head right now. Yep.

Next up: A Foul Mood and Another Aspiration

So, I mentioned earlier that my sister Lisa was coordinating blood and platelet donations from friends and family. This was to ensure that the donations were documented and not from unknown donors from the general blood bank. From the beginning of the transplant, after my blood counts were so low, I had received several infusions of blood and platelets needed to maintain my survival until the new bone marrow had the chance to take over.

My parents were at the hospital to visit me. I believe it was a Saturday in the early afternoon and time for another platelet infusion. This was generally a small IV bag that took about twenty minutes to enter my system. It was usually given with a dose of mild antihistamine in case of a minor reaction to the dose. I never really had an issue…until today.

This was an out of body experience. I’m talking crazy. As the platelets coarsed through my body, I started to develop a nasty red rash all over. The nurses called in the doctors to check it out and prescribe something stronger than usual to alleviate the problem. It wasn’t working. I was itching terribly all over. My family was watching and getting very worried. It was not a pretty sight. Then it happened. A full out scene from the exorcist. I had no control of my arms or legs. I was kicking and flailing as my arms and legs were just flying all over. My body was literally lifting itself up and down off of the bed. The nurses were trying to hold me down awaiting additional meds that were being ordered to suppress the devil inside. Everyone was panicking at this point because nothing like this had happened before and it wasn’t subsiding. I believe that the next huge doses received, Benadryl and Atavan, were a hail Mary to stop the madness.

Finally, the drugs began to work and my body was gaining control of the situation. I was completely drained! This was, as bad as I felt during my two and a half weeks, the first time that I thought I was in real danger. We all did. My Dad was beside himself. Its not often you get to watch a live exorcism. He had one question. Who Donated Those Platelets??

This was 1996. No HEPA rules to get around luckily. I was fortunate to have great friends. There were so many donors. Two had actually flown in to participate in the donation process and help my cause. Michele Selvaggio from Florida and David Brecher from California. We waited patiently as the doctor requisitioned the blood bank for the name associated with the dose. The winner….David Brecher!

Dave had come in a few days earlier while being back in Philly for business. He had gladly made time to come down to the hospital to help me out. He was like a brother from another mother. Best friends with my brother Glenn for many years since grade school, he was a fixture in our home. When he came up to visit me after donating, he was white as a ghost. I do remember that. I didnt know if it was that he was afraid of needles. Or that he had lost too much blood. Or that he was my life insurance agent. Ha! I did look pretty bad.

The call went out to the West Coast. Dave was speechless. How could this happen? He felt so bad and apologized profusely. He wasn’t taking any medications or having any medical issues, they screen for that. He could only come up with one explanation. My body couldn’t handle his Supercharged Jewish Platelets! Ha! They were just too potent! I went with it. Dave was nothing ever but a class guy and great friend. How could I disagree? My body was to become a conglomerate of personalities, nationalities, genders and the beneficiary of all of those that mattered in my life. It was so welcomed. Thank you to everyone who contributed their time, effort and life saving fluids on my behalf. I am a blessed and fortunate man.

Next Up: I want my Baby Back…Baby Back

I spent most of the next day after the transplant in a sedated and disoriented state. The new marrow would inconspicuously travel through my bloodstream and zero in on its target. The chemotherapy was still present and accounted for as the nausea and pain continued to consume my body. I found out that my brother was doing well and being released to head home and recuperate from the many aspirations that he had to endure. I’m sure that he would be very uncomfortable for a while. Like I said before, bone marrow aspirations Suck! Poor guy.

I can’t remember if I spoke to Nicky yet but there was nothing better than to hear his sweet voice. Better than any painkillers. I’m sure that I did but it was a foggy period for me. The usual buzz of nurses and doctors in and out was exacerbated by the fact that this next few days would be crucial to my survival. I needed to be monitored continuously for any deviation in my vital signs or change in condition. My nutrition was solely IV nutrients. No solid food for a while. Ice chips occasionally too. Every CBC, every few hours, would tell the tale of my existence. Would my brother’s marrow graft to mine? Only time would tell. I could only lie there and hope… and sleep.

I wish I could fill you in more but I just don’t remember much about that day or the next few, but I do know this….it was working! The blackboard was filling up. Every few hours as the results of the constant blood draws returned, the data blocks were being filled in by excited nurses that were really pulling for me. Positive numbers gradually and incrementally climbing ever so slowly. But who cared. They were moving up! Dr. Dave was excited too! He let me know that the graft was progressing and he seemed somewhat confident that barring any major complications that the trend would continue. Everyone was so happy. It would be a grueling and emotional time but hopefully worth the while. It had to be.

Meanwhile, other issues were cropping up. Fevers, terrible mouth sores, bone pain, nausea, etc. Typical, but just freaking awful. This was no fun. I missed my boy. I missed my home. I missed my work. I missed my life. The one thing I could count on…Lor would be there. Sitting in the chair across from my bed in her mask and gown. Whether I knew it or not. Unbelievable.

Next up: Strange Platelets

I woke up this morning, the 7th of August, my moms birthday was the day before. It was very early as the buzz of nurses and doctors was all over my room. Today was the day. More bloodwork, more meds, more examination and more anxiety. Well, as much as I could muster. My brother Glenn had arrived and was being prepared to enter the OR and begin the process of extracting his bone marrow through the aspiration process. Multiple aspirations. He would be fortunate to be anesthetized for the duration and recieve pain meds throughout the duration of his overnight stay. My parents and Glenn’s wife Rachel were in the surgical waiting area while Lori waited with me in my bubble.

It would take a few hours to harvest the marrow and then prepare it for its delivery to my body. I really had no idea about the process or the procedure but I know that I needed it asap! Around 12 noon the transplant team arrived with a small cooler and said that it was time to go. When they opened the cooler I was more than surprised. Two small plastic IV bags of thick pink and gooey looking solution. This was Glenn’s marrow. They hooked the bags up to the IV tree and placed the rubber tubes from the bags into my Hickman Catheter and released the flood. The procedure was simply to introduce the marrow into my bloodstream and from there let the marrow find its way into my bones. That’s how it works. Pretty simple and straightforward. Little did I know that it really wasn’t that simple. I was given Benadryl for any adverse allergic reaction that might occur, antibiotics to stem any infection that may try to infiltrate my system and more pain meds to take the edge off. I heard from Dr Dave, who performed the aspirations on my brother, that he did great and was recuperating in his room. He would be sore for a while. My parents joined Lori in my room. All protective gear necessary to enter the room had to be worn. Any infection at that point would kill me. I drifted off to sleep as my family discussed the days events. I was weak and vulnerable. I needed to rest, to heal and to let the marrow do its job. The next two days would either make it or break it for me. A 50/50 shot at life. No pressure at all. I got this. Can’t wait to see my first scoreboard in the morning. Got to see some numbers. No Zeros!! Thanks Glenn…Love you.