The penultimate round

On April 12, 2024, I went into the hospital for my fifth round of chemo with a mixed feeling of excitement and dread. There was more of the former than the latter because I felt the end of the chemo was getting near, with round six being the last (let’s hope).

I kicked off the session with the usual visit to the out-patient oncology clinic. The good news was that my chemo dosage would stay the same. For the previous round (Chemo Round 4) the dose was escalated by 20%, and it did a pretty good job of killing white blood cells. My counts got very low and my doctor didn’t want to go too far with another dose escalation.

I then checked into my room at the hospital and started to set up my living quarters. My wife and I had our routine pretty nailed down with all the same supplies and equipment as in previous rounds. The key items are my decent air filter, super plush mattress pad and my amazing air humidifier. If you need a humidifier, I strongly recommend the Miro, as it is completely washable. You can access every single part for deep cleaning, which is impossible with any other humidifier on the market. Plus if you act now, I will throw in a set of Shamwows.

Before the chemo started, my wife and I ordered a nice dinner using DoorDash gift cards that were kindly provided by our amazing and generous friends. I am so appreciative of the support I’ve received from friends and others that I’ve never even met before.

After delays and more delays, I was finally hooked up to chemo starting around 11pm. That’s about 9 hours after arriving and I just don’t understand why it takes so long to get started on chemo, but this is the way it was no matter what I tried to do to expedite things.

We started with rituximab. I had no bad reaction so I was quite happy. It was a long night of interruptions from the hospital staff, but that is the way it works. Very little sleep.

The next day my sister and niece arrived to visit for the weekend. My sister came from Southern California and my niece came in from Chicago. We had a great weekend for sure and they brought me some excellent food so I didn’t have to deal with the undesirable hospital meals.

Late Sunday the nausea started to kick-in and it was worse than the nausea I had in round 4. I took extra anti-nausea meds and it helped enough so I could have a small snack for dinner. Also with each round and especially this one, the heartburn was pretty bad.

After my sister and niece left to fly back to their homes, my wife and son visited me. It was great seeing my son since he can’t visit too often due to school and other activities. We watched most of Sing 2 and it is an excellent movie. After my wife and son went home, I finished the movie alone and really enjoyed the ending. Then I went onto YouTube and listened to some of the soundtrack, especially the songs by Reese Witherspoon and Scarlett Johansen. I didn’t realize they actually sing in the movie and that they are so talented. But one of the songs hit me emotionally – the lyrics triggered something in me for sure. I think the song was, “Stuck In A Moment You Can’t Get Out Of.” The nurse walked in just as I was overcome with emotions and she stayed with me and chatted for about 30 minutes to “talk me down.” It was incredibly nice of her and she was nothing short of a saint as were so many of the nurses at HUP. Truly remarkable people who were clearly put on earth to take care of others.

The next day a hospital staff member (not a nurse but some type of support staff) visited to see how I was doing and if I needed anything from her. I wasn’t sure what she could give me, but I took the opportunity to just chat for a while. We talked about how life can be very difficult at times, and it seems over the past few years life has been more difficult for everyone. She revealed a lot of her own personal problems and struggles with her parents who are both near death. I said that there was no shortage of trauma in this world and the only people I know who don’t have problems are people I don’t know well. Actually the only people I know who have perfect lives are Instagram influencers. They certainly have figured out life, duck-faced selfies and belfies included.

We also talked about how the governments around the world responded to COVID. I love hearing the opinions of healthcare workers since they saw so much first-hand. There seems to be a consensus that at least our government didn’t do the right things and inflicted much unnecessary pain on us ordinary citizens. People delayed their healthcare visits, people developed psychological problems, children missed school, marriages ended, businesses were lost, people committed suicide, and the mandated “vaccines” were neither efficacious nor safe. Unfortunately the very unhealthy were going to die from Covid and we had to do our best to protect them. Releasing sick Covid patients into nursing homes probably wasn’t a great idea. Meanwhile the very wealthy got extremely wealthy. Everyone else got poor or at best blew their stimmy checks on a new Louis Vuitton handbag or wallet. But at least they got something out of it. There’s an concept called the Cantillon effect. It means that when a currency is beginning to undergo devaluation through money-printing, the key is to spend that money before anyone else does. As soon as everyone else starts spending, prices will skyrocket. Savers are suckers. Unfortunately I’m a saver. Sorry for this tangent, but it was much needed venting and I appreciated the conversation with the nurse.

April 16 was my second to last day of chemo for this cycle. The nausea was still pretty bad, but the anti-nausea meds prevented any vomiting. That day I also had my second to last lumbar puncture. Only one more left, during my sixth round. The spinal fluid was negative once again for cancer, and they injected methotrexate as a precaution.

On April 17 I finished my fifth round of chemo and was released to go home.

My first week of recovery at home was the worst I experienced. The chemo really rocked my body. I slept for at least a few hours during each day in addition to a full-night’s sleep. The nausea persisted for over a week but I was still able to eat. Ice cream was the easiest food for me to get down, and it was actually quite enjoyable. A common side effect of the R-EPOCH chemo is mouth sores, and mine were pretty bad during this recovery round. The ice cream also served to sooth these sores.

The specific mouth sores I had, which are known as oral mucositis, are a common side effect of chemotherapy, including regimens like R-EPOCH. While my sores were minor and only caused some discomfort and annoyance while eating, some chemo patients report these to be quite severe, even causing the inability to eat or drink. The sores can also lead to infections. Why do these sores appear? They are usually caused by the chemo targeting the rapidly dividing cells of the mouth, throat and digestive tract. The problem is compounded by the immune system often being weakened during chemo, reducing the body’s ability to repair the damaged mucosal lining. I noticed when my WBC counts rebounded, my sores would go away within a few days, likely due to my immune system finally able to repair the damaged tissue.

It is also worth mentioning a few other side effects I experienced: significant foot pain (really odd feeling), extremely puffy eyes, ear congestion, and brutal lethargy.

Round Six: FINAL ROUND

Just as I started feeling great again, it was time to return to the hospital. On May 4, 2024, I entered the hospital for 5 days, and hopefully for my last cycle of chemo. The good news was that the dose would stay the same, since the previous round had adequately impacted my blood counts.

At around 11pm, the chemo started. This time the nausea hit me by the time half the chemo bag was emptied. I knew it would be a long week!

My other sister and her husband flew out from California to visit me. They spent a few days hanging out in the hospital and also visiting some of the tourist-ish sites in Philly. They took walks with me around the halls and brought me lots of food from the outside. My appetite was pretty non-existent, but I managed to force down enough food to stay nourished. I was also drinking 3 liters of water per day, often spiked with Liquid IV, a hydration powder my wife found at Costco. It’s not the best tasting, but it is loaded with electrolytes that I much needed.

My visitors left and I was alone for a day, which wasn’t a bad thing. But one night I had a terrific surprise. An older couple with guitars in hand, performed a song about going fishing. I’ve never heard the song before, but they were very good. It was incredibly touching to have these people–just some random volunteers– show up at my door and ask permission to play guitars and sing. Who thinks of doing that? “Hey let’s spend a few nights a week singing to cancer patients.” Some people are just amazing.

The next day during a lap around the floor, I ran into two of my nurses from my first round of chemo. They didn’t recognize me at first since I now looked so different from when they were assisting me back in January. They reminded me of how thin I was, how I couldn’t walk, couldn’t speak well, and couldn’t eat. These nurses were remarkable people and took such great care of me when I was so ill. I thanked them many times and explained my appreciation. I think they were quite touched by my words, and they probably don’t get to often see the longer term results of their efforts. I spent some time filling out submission forms to nominate each of them for the Daisy Award– an award given to nurses for outstanding care.

After a full five days, my chemo dripped its final drop, and I could get disconnected from the tubing. I started to pack up the room while my wife was on her way to pick me up. How did I feel emotionally about being done? I had some mixed feelings. As odd as it might sound, I felt worried about not getting more chemo. It became a “security blanket” for me. As horrible as all the hospital experiences were, I worried about the cancer returning, if I were to not continue to get the infusions. But my rational brain had to kick-in and explain that I cannot continue to get chemo and most likely all of the cancer cells are dead.

I spent the next several weeks at home recovering from that final round. The recovery wasn’t as bad as with round 5. Now I was physically much stronger and able to function pretty normally around the house. I was attending my son’s baseball practices and games. It was getting nicer outside and I was able to walk around my entire neighborhood with only a slight limp from my very tight calf muscles.

On May 24th, 2024, two weeks post final chemo drip, I was delighted to have my PICC line removed. It was a surreal sight to see 20″ or so of tubing being pulled from my arm. It was the last remaining evidence of my treatment. The line was in my right bicep and terminated in a large vein near my heart. I have no recollection of it being placed into my arm back in early January. But after 4.5 months I was so glad to have it out. I could finally shower without a bag on my arm and I could now take a bath or swim.

On June 7, 2024, I returned to the outpatient clinic at HUP to have my post-chemo PET scan. They first infused me with the radioactive glucose analog, then I waited an hour for it to circulate throughout my body. Finally, I received the ~10 minute scan. About 2 hours later, I had an appointment with my oncologist to review the results and discuss next steps. I received great news! The scan did not detect any lymphoma. My doctor said this was the most important scan for monitoring progress. Burkitt’s lymphoma is very fast growing and if there were resistant cells, they should have already been detectable after 4 weeks post-chemo (Burkitt’s Lymphoma cells can double in just 24 hours). My oncologist said the next scan would be 6 months out and that one will also be important. But as time goes on, and because of the aggressiveness of this cancer, it would make itself known well before any subsequent PET scans, if I were to still have any “stragglers.”

About a month later, on July 5th, 2024, I had a follow up bone marrow biopsy. I was originally diagnosed via a bone marrow biopsy, so it was important to reperform that same test. The results were negative, e.g. no cancer detected!

Concerning future follow-ups, after the October PET scan I will have 3 more the following year. With each scan, the probability of recurrence becomes vastly less.

Take away: Sometimes miracles do happen.

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