After a very difficult, painful and frustrating month, I finally received my diagnosis of Burkitt’s lymphoma (for background see Cancer Journey Part 4). Treatment was to start immediately. The first round of chemotherapy was initiated on the evening of Friday, January 12th. This was a very busy day for me. The good news was that, early AM, my two sisters arrived at the hospital after their red-eye from California. This was the first I had seen them since June 2023. It was hard for them to comprehend what I had been going through and seeing me in person was likely shocking to them. I was thin, frail, weak and had difficulty talking. My wife had been keeping my family informed since I had arrived at the ER on January 7th, but seeing each other in person made things very real. It was visibly clear I had stage IV cancer.

My sisters witnessed my first physical therapy session early that morning. A very fit and motivated young man walked into my room carrying a walker and said, “This bed will suck you in and never let you leave. You must get out of it everyday. Today I’m going to make you get up and walk across the room with a walker.” My initial thought was, “Is this guy crazy? I can barely move in bed and now he expects me to walk with that contraption?” Not only was I still in pain, but I had basically been bedridden for the past 5 weeks. My muscles (what was left of them) were tight and sore. I had lost at least 30 pounds. Keep in mind I was a slim person prior to this ordeal starting. My blood pressure had also dropped to, at best, 90/50 due to my rapid weight loss and dehydration. This made sitting up in bed or standing up challenging because I would get so lightheaded. I wasn’t allowed to get out of bed without someone with me. Well, none of that mattered to the PT guy and I was forced to get out of bed. I thought about when I was younger and did heavy squats: I never wanted to start that next set of reps, but I just pushed ahead anyway. So I gripped the handles of the walker and took the first step, while figuring out how to make the walker slide forward. That first step made the second step easier. I recall my sisters, who were once again witnessing my first steps, cheering me on. They were so delighted and I walked towards their big smiles. There was a whole new world out there in this fancy hospital room, including a huge chair that had my name on it.

After the success of my walk, the physical therapist gave me my exercise routine: at least once a day, get out of bed, walk to the other side of my room and sit on the chair for an hour. The longer I could be out of bed, the better. Sitting in a chair might sound easy to most of you, but to me it felt like climbing Mount Everest. Yes just sitting was physically taxing. Also it didn’t help that I was resting on almost raw bones, as all my fat and muscle had disappeared from my butt and legs. I used my handy seat cushion and extra pillows to make myself more comfortable. My room was freezing and again, the lack of body weight did not make the cool temperature easy to handle. It didn’t help that it was January in PA and apparently I had the absolute coldest room in the hospital according to the one attending physician. My wife started a list of things I needed for my stay: blankets, humidifier, air purifier, toiletries, clothing, snacks and food for her (luckily, my room had a mini fridge). I was going to be there a while so it was time to move in.

Next up was another visit from speech therapy. They had been evaluating my speech and swallow each day, but no decision had been made about how I was going to eat. I was on IV fluids, but still had not eaten in almost 96 hours. I was hungry, but the hunger was the least of my worries. I was still in pain, especially in my neck, back and legs and had so many other symptoms that I think everyone, myself included, forgot just how long ago I ate. The doctors had been waiting to address my nutritional needs with the hopes that a day or two of the steroids would heal my swallow muscles. My wife, however, was keeping track and with it now approaching 5 days without food, she pushed to get me a feeding tube rather than wait any longer. I needed the calories. How could I possibly begin to get better without some sort of food? I remember seeing myself in a compact mirror and couldn’t believe how big my teeth looked when contrasted against my emaciated face. It was time for another swallow test and a nutrition plan.

They used a live video x-ray while I attempted to swallow a barium syrup. It was apparent that my swallow was not going to come back any time soon. The speech therapist recommended I get a nasogastric (NG) tube (aka feeding tube) inserted. The procedure was performed right there in my hospital room (and interestingly enough, most procedures I had were done in my room.) The process was a horrible experience. They take a thin plastic tube, which has a small metal piece at the tip, and shove it up the nose and push it down into the stomach. Getting the metal piece to pass through a tight area of the sinus cavity was pretty brutal. Once in, the sensation of the tube was uncomfortable, as it irritated my throat and induced additional saliva secretion that I was unable to swallow. The nurse that did the insertion, taped the tube to my nose so it wouldn’t move around as much. What an awful setup. It had been the most uncomfortable and painful procedure yet. But the NG tube experience was also psychologically damaging. I felt that I had lost some dignity. According to my wife, after the procedure, I sat silent, staring at the ground. Then I asked everyone to leave for a bit as I needed to be alone. I think I sent them away so they wouldn’t be able to see me in this condition. It felt better to just sit alone in bed and stair up at the ceiling. I do recall having a hard time accepting so much at once: I had cancer, I now had a feeding tube, and they would continue sticking needles into my spine. Furthermore, the fact that I couldn’t eat, a basic necessity and joy of life, profoundly affected me. When would my swallow come back? Would it ever come back? I thought about when I would go back to work and go out for business lunches. “Oh, don’t mind me while you eat your steaks, I’m going to hook up my feeding tube.”

Fortunately, I don’t think my stupor lasted too long and I was able to get back to reality– I needed to focus on getting better. The tube was a necessary evil and at least I was able to get calories on-demand. How does the NG tube work? The tube connects to a bag of a syrupy liquid, known as Nutren. An IV pump is connected to help deliver the fluid into the tube, which goes into my stomach. The tube completely bypasses the mouth so I didn’t have to swallow or taste anything. When one is suffering from malnutrition, calories are calories, and I could not afford to lose any additional weight as I had virtually zero strength to start my healing journey.

Losing 30+ pounds, not eating and being dehydrated made the simplest tasks very taxing. Sitting up in my bed took effort. I needed help reaching things from the bedside table and doing pretty much any simple thing. My wife would end up being by my side from about 10am until 8 or 9pm everyday. She was my full-time personal assistant and practically becoming a nurse.

As I was learning all about my new diet plan, the speech therapist reiterated what he had told me the previous visit. I must maintain good oral hygiene. One of the biggest concerns now was the risk of pneumonia. Why? Bacteria-containing saliva could easily get into my lungs since my epiglottis and swallow muscles were not functioning. The epiglottis helps keep food, drink, and saliva from going down the wrong pipe (getting into the lungs). If bacteria were to go into my lungs while in my weakened immune state, it would be easy for pneumonia to develop. The speech therapist (and the doctors and nurses) instructed me to practice good oral care daily and tasked me with cleaning my mouth 3 times a day. I was supposed to brush and floss, but we quickly realized that was out of the question right now. I couldn’t make it to the sink and could barely feel anything in my mouth in order to brush or floss properly. I also couldn’t maneuverer my tongue around enough to properly rinse and spit out toothpaste. Instead I was given mouth swabs, mouth cleaning solutions and a suction device similar to one from the dentist’s office. It was quite an exhausting process to clean my mouth. I did it in bed and it took at least 15 minutes with help from my wife. I needed her to help me with all of the tools, hold a mirror, hold my spit cup, hand me the suction wand, etc. My oral care became my wife’s top priority everyday. Some days though, all I had time or energy for was one cleaning. I was so busy with my symptoms, care, tests and interruptions and trying to fit in some sleep where I could.

Now that I had some calories coming in, I would need a way for the calories to come out. I was still pretty uneasy with the walker so the nurse put a portable potty next to my bed. This subtracted more from my dignity and even caused some humiliation. I was feeling like a prisoner of my bed and my illness.

At 5pm on Friday, January 12th I started on the R-EPOCH chemotherapy regimen. Two nurses in full protective lab suits put up the IV bag and read off my name, date of birth, patient number, bag number and other checks and balances. The doctor had decided to forego the one chemo ingredient called Vincristine, so that was omitted from the EPOCH mixture. Vincristine has significant neuropathy side effects, many of which I was already experiencing. Thus if I were to have a bad reaction to this drug, we possibly would not be able to tell. The neuropathic side effects are quite serious.

After the chemo started, I thought I would instantly feel sick from the chemicals running through my blood, but I actually didn’t feel much of anything. In fact, I felt pretty good except for some uncomfortable GI problems that manifested after a few days. I think my body was too messed up in so many other ways to care much about the poison being pumped into me.

During the first round of chemo, I sat in my room with the lights off, the tv off and the shades down. All I wanted was silence and darkness for most of the 3 weeks I was there. My wife would try to get me to turn on the TV, but I didn’t like the noise and the excessive visual stimulation. She insisted on opening the shades though and I definitely needed the sunlight. At night I didn’t get much sleep. It was constant discomfort from the NG tube and I would choke on my own saliva since I couldn’t swallow. I used my suction device all night to pull out saliva when it got to be too much. The tube was absolutely horrible and I was constantly trying to clear my throat and I soon developed a persistent cough from the irritation. There were also continuous interruptions including visits for vitals, blood draws, nurses and doctors dropping in and the beeping machines. The R-EPOCH mixture is known to be the ‘champagne chemo’ not because it is extra special, but because it is prone to small air bubbles forming in the lines. The bubbles cause the pump to pause and sound an alert. For 5 days straight, I listened to the beeps and suffered through the constant interruptions every night. I think I averaged around 1 hour of sleep per night.

My room was pretty amazing though, and HUP is truly a remarkable hospital. Not only are the doctors and nurses superb, but the technology in my room was top notch. I had a sophisticated digital system where information was displayed on a massive TV screen. I could see info about my care team with their faces, names and titles, along with my own details such as: fall risk, allergies, no oral medications, no oral food or drink, and the daily goals they set for me. The TV remote also controlled many aspects of the room. For example, I could control the opacity of the windows that allow one to see in or out of the room from the hallway. From the same remote I was able to raise or lower the window shades (with a great view of downtown Philly). I could also control the temperature, but as I said before, this particular room was the coldest on the floor for unknown reasons. There was nothing I could do about the ‘4 o’clock freeze’ as my wife and I began to call it. My wife brought in 5 blankets from home, but we were both still cold. Our pastor hand delivered 3 prayer shawls which were blankets knit by the lovely women in our church. One for my wife, my son and myself. But I was still cold so my wife ordered me a bunch of heated clothing items like socks, gloves and a vest. I wore these items daily for 3 weeks. Needless to say, I was not bathing or able to change clothing much at all. I was hooked up to an IV 24/7 and since I was a fall risk, there was no way to shower.

By Saturday, January 13th, my speech had improved slightly and my bone pain was gone. This was a breakthrough. I also had my 2nd in-room lumbar puncture (spinal tap). Thankfully, the fluid taken out was negative for lymphoma, just like the LP that was done a few days prior. Now that I had two negative LPs, plus no CNS tumors showing on MRI or PET scan, it was determined that the lymphoma had not spread to my central nervous system (spine and brain). This was fantastic news. Treatment would be much easier and I had an optimistic prognosis. Yet even with a negative LP, I still had to receive routine methotrexate injections into my spine as a precautionary/preventative measure since I was already at stage IV. The LPs can be painful and I dreaded them, but they are an important part of the R-EPOCH treatment plan since IV chemo will not make its way into the spinal fluid or brain. After my very uncomfortable LP, I had to lay flat for one hour. This is standard procedure after every LP, and it is to help the injection site heal and prevent dizziness and headaches from the loss of spinal fluid.

On Monday, January 15th, my sisters had left and I was finally able to get a sponge bath. This took all day. My wife started with my feet in the morning and section by section throughout the day in between interruptions and naps, she gently wiped my body clean and changed my clothes.

It’s hard to describe how much time all of these simple tasks would take. It took an entire day to clean my body and change my socks, underwear and pants. It was an extra good day if I was able to clean my mouth 3 times. My wife would arrive each day with a goal, “Today we will clean your feet and change your socks.” Or, “Today I will wash your face.” I had to force myself to use the walker to and from my bed to the chair. I would sit for an hour or longer if I could.

Tuesday, January 16th I was given the last bag of chemo. This bag contained the drug Rituximab. It comes with some pretty serious side effects, one being severe allergic reaction. When administered for the first time, the drip is so slow that it takes a few hours. (If it’s tolerated well, on subsequent rounds the infusion is done over one hour.) It was now late in the day and because of the chance of allergic reaction to this drug, my wife decided to stay over night. I was given “pre-meds” which were Benadryl and Tylenol. A high dose of oral Benadryl tablets can make you sleepy, but a high dose of Benadryl administered via IV is beyond brutal. Within seconds, I felt the drug hitting my brain and the sensation is difficult to describe. I just recall being worried that I was going to die right there. There were two nurses in the room, and the main one was a male nurse. Since he was around 6’2″, he elevated my bed to a very high position so he wouldn’t have to bend over too much to access the PCC line in my arm. So there I was feeling like I was 12 feet in the air with the Benadryl fully nuking my brain. I was starting to panic a little, but the nurses said some patients have a horrible sensation from the IV Benadryl and not to worry, as the effects will wear off shortly. They were right. The nuked-feeling subsided within about 5 minutes.

Since the pre-meds had taken effect, the nurses could start the Rituximab IV drip. Every 30 minutes my vitals were taken, and again, it was another night full of constant interruptions. Thankfully, I didn’t have any reactions to the Rituximab and I handled it quite well. By morning, my tether was gone. I was no longer hooked up to an IV and I could now move about more freely.

Now it was time to get to work building up some strength. I was receiving the nutrition formula which was about 1500-1800 calories a day. Certainly this was not enough to gain any weight, but it was keeping me fed. I was down to 143 pounds, but little by little my strength stamina would improve.

On Thursday, January 18th the sun was out and my wife encouraged me to sit on the sofa by the window and get some hot sun on my skin. It felt amazing. It was a beautiful day and the heat from the sun refreshed my tired soul. I used my walker to explore around the room more. I saw inside the bathroom for the first time and finally washed my hands in a sink after about 10 days of not leaving the bed area. I was even able to walk to the door and peak out into the hallway. It’s a massive hospital and the hallway seemed to go on forever. The nurse said eventually I’d be doing laps along with the other patients on the floor. “4 laps around = 1 mile.” Clearly that nurse was out of her mind.

I soon progressed to walking out of the room and sitting in the lounge area. This was even more demanding, but my wife forced me to do it every day. When she was being really tough, she’d make me take the long way back to my room. Those extra 50 steps would make me nap for another hour.

I had now been at HUP for 10 days. I was done with the 1st round of chemo, but the docs wanted to keep me in the hospital so they could monitor how I tolerated the treatment. There was also talk of moving me to a rehab facility. I was in such bad shape and going home to a 2 story house wouldn’t be feasible in my current state. Everything was day by day. The main doc who was clearly the big man on campus visited me every morning for about a week. He was chipper and always had an entourage of at least 6 with him. “You’re starting off worse than most patients, so I would happily keep you here until you’re finished with round 6, but we won’t do that to you.” I was starting off worse than most people and had 5 more rounds of this. When would I feel like myself again? The thought of staying in the hospital for so long or moving into a rehab facility was enough to make me determined to get my strength back.

The following day, January 19th, a snowstorm swept through the greater Philly area, leading to the closure of most schools. My wife stayed home with our son, enjoying her first day off in 12 days. That day I found myself alone with no visitors. Throughout my hospital stay my wife had been a constant presence and our pastor, along with my sisters for a brief period, had visited daily. Now I faced the day by myself, tasked with managing my activities on my own. Though I could request assistance from the nurse, I couldn’t have her by my side all day. So I forced myself to have some bigger accomplishments. I began using the standard toilet with my cushioned seat installed. Finally, I was able to abandon the portable one by my bed and regain some of my dignity (and privacy). I refilled the humidifier on my own. I used my walker to move between my bed, chair, and sofa. I even walked to the lounge to watch the falling snow. Each task was exhausting, yet with every step, I felt like I was triumphing over a brutal opponent.

My wife arrived Saturday morning while I was having my first blood transfusion. My red blood cell count had dropped too low and I was quite lethargic. But immediately after the transfusion, I felt like a new man.

By Sunday, January 21st I was finally ready for more visitors. My wife and my pastor were still coming everyday, but I missed being more social. I lined up a few visits for the rest of the week. My support system was ready to be there for me, however, I don’t think any of them were quite ready for what they saw. My whole experience happened so fast, some of our closest friends weren’t even up to speed. After hearing of my diagnosis, my wife’s best friend asked her what she needed. The only thing that came to mind was, “a hug.” He immediately booked a flight to be by her side without knowing any of the details. When he arrived at the hospital, it was apparent that he was completely taken aback as were a few others that came to visit. It really was a complete shock to everyone and it made me realize just how quickly and drastically this disease had terrorized me.

With my determination to get home and the help and support from those around me, I was getting stronger with the walker and scooting myself around the halls like a champ. I was still using the short-cut back to my room, but going much faster. One nurse stopped me in my tracks to put tape on the bottom of the walker pads so I didn’t make so much noise– and this helped it slide smoother.

As is typical with chemotherapy, my hair began to fall out about a week after the chemo ended. This was yet another piece of dignity that was shed. Although, I imagine that hair loss might be even more humiliating for women. Seeing the white pillow case covered in my dark hair each day was especially sad for my wife as it was another visual symbol of my illness. A pale, bald head is a hallmark identifier of a cancer patient.

I was finally getting to the point where the doctors felt comfortable discharging me from the hospital and sending me home. I was relieved for many reasons, but mostly I missed seeing my son. I hadn’t seen him in 3 weeks. He’s only 7 and my wife explained things to him in a gentle and age appropriate way, but I knew he was going to be very scared of the new me. My wife and I decided to have him come to the hospital to visit me the day before I was to go home. This way he could see the amazing facility where I was being treated and see some of the equipment that would be coming home with me. Knowing our bright and inquisitive boy, we knew he would appreciate a brief introduction to all of this technology and gadgetry. We also suspected he would need some time to digest seeing me in this condition before having me at home again.

As I was being prepared for the transition of going home, the doctor informed me that I wasn’t allowed to go home with the NG feeding tube in place. It’s not a long term solution for enteral feeding and only used for short term in a hospital setting. I was going to have the NG tube removed and have a gastric tube placed instead. A gastric tube is inserted through the abdomen and goes directly into the stomach. This was an uncomfortable procedure, but the pain afterwards was brutal. It was by far the worst procedure and hardest recovery and took a few days for me to feel better. But getting the gastric tube “installed” was most necessary since the staff wasn’t sure when/if my swallow muscles would come back. I would need food, even if it was just a syrupy substance.

Saturday, January 27th was the day I went home. I was worried about not being monitored like I was in the hospital, which was continuous (vitals every four hours, blood work daily, EKGs, etc). But fortunately while at home a nurse would come several days a week to do the monitoring. They performed blood draws twice a week, recorded vitals, and communicated back and forth with my oncology team.

Walking into my home, I was filled with so much emotion. My son and mother-in-law had decorated the house with balloons, streamers and a ‘welcome home’ sign. It brought tears to my eyes and my son was beaming with pride – since he was part of the decoration committee. My wife had filled every surface with the plethora of ‘get well soon’ cards that were mailed to us by so many kind people. Now being home with my family, I was reminded of the reason behind my willpower and mental strength to endure the cancer treatment and all of the often uncomfortable procedures: I had a wife and a young son who I wanted to see grow up.

It was a relief to be home, but tough physically. I can’t believe how difficult it was to walk up and down the flight of stairs. I had a walker on both the first and 2nd floor of my home. I would very carefully go up the stairs one tread at a time, with both feet pausing on each tread. I needed an escort and sometimes I needed to pause to catch my breath.

Since a nurse could only visit 2 or 3 days per week, my wife learned how to hook me up with IV fluids. I was on daily IV fluids because my blood pressure was still very low. I would sit in my chair or lay in bed for 4 hours while being infused at home everyday. My house started to look like a doctor’s office, complete with centrifuge, IV poles, equipment, syringes, etc.

After only a few days of using a walker at home I was able to switch to just a cane. This was huge progress! Managing the stairs got easier and easier.

After a few more days of recovery, and allowing my blood counts to come back somewhat, it was time to go back to the hospital for round two of chemo.

During my home/recovery period, my pastor visited many times to see the family and me. She gave me one great piece of advice regarding the long road of chemo ahead. She said that when she has to run long distance like a half-marathon, she just focuses on one mile at a time. So she advised that I just try to get through each round and not think about the future rounds until the time comes. I will say the “one day at a time” approach does work, although there were many moments where I had to take it “one hour at a time.”

Takeaway: Life can present unexpected challenges that test your limits. Embrace resilience by focusing on small, achievable steps toward recovery, recognizing that every bit of progress contributes to regaining your strength and health.

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Continue reading Part 6 —- https://vincepaton.com/2024/03/10/cancer-journey-round-two-chemo/

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