Immediately after completing my second round of chemotherapy, I was finally able to go home. I had 16 days dedicated to rest and recovery, a much-needed break after having spent so little time at home before this round. Previously, I had been kept in the hospital for an additional 10 days of observation post-chemo due to my initial poor condition. However, now that the doctors saw I was handling chemotherapy well and making significant progress, I could follow the typical R-EPOCH regimen. This schedule involves 5 days of continuous chemotherapy treatment every three weeks, for a total of six rounds.

From this point forward, I would have 16 days at home to recover before the next cycle began. My routine during these recovery periods looked something like this: The first five days at home typically involved a lot of napping during the day and sleeping at night, which was difficult to do in the hospital. The lethargy during these first days was intense, and my nausea would persist for 4-7 days post-chemo. By the seventh day at home, my nausea would subside, and my appetite would return. Around this time, my blood counts would drop to their lowest points. If my hemoglobin dropped too low, I would need to go to the clinic for a red blood cell transfusion. I could definitely feel when my hemoglobin was very low, as I would get easily exhausted from even the slightest physical activity.

My white blood cells (WBC) would also drop, but these cannot be transfused. One type of WBC is the neutrophil. When these drop too low, it is known as neutropenia, a condition where the body struggles to fight infections. This is when my immune system is at its weakest. Throughout my chemotherapy treatments, I followed a neutropenic diet, which prohibits raw vegetables, raw fruit, raw fish, and lunch meats, as these foods can harbor pathogenic bacteria that can cause infections in someone who is neutropenic.

Aside from the body naturally recovering and producing more neutrophils, the only way to accelerate the process is through an injection of a specific growth factor (filgrastim or pegfilgrastim, both synthetic versions of G-CSF) that stimulates the production of neutrophils. This injection is given after every chemo cycle ends, about 48 hours post-treatment. A family friend who is a nurse helped with this because the visiting nurses were not allowed to administer this shot. Pegfilgrastim was quite effective at raising my neutrophil levels, though it did cause mild side effects such as bone pain.

As my blood counts (RBC/hemoglobin and WBC) would start to go back up, I would start to feel pretty good. This occurred during the last 4-5 days of my break. I would feel great and ready to jump back into my life, but that’s precisely when it’s time to return to the hospital for the next round. Rinse and repeat.

Now that I’ve explained the general process of my cancer treatment and the typical effects of chemo, I’ll tell you about how I used my time outside of the hospital to focus on getting back to normal.

A few days after I came home and caught up on some sleep, my brother came in from California to visit me. He was kind enough to do some home repairs for us. The biggest one being patching the hole I put in the bathroom wall while bracing myself on the towel bar back in December. We had a nice time catching up and it felt good to have him just hanging around at home with me. I know that my son enjoyed hanging out with his uncle. My brother also bought my son a baseball mitt so he could be ready for his first season of baseball! Having my brother around for a few days was a great way to start off this break. He has a positive outlook and helped lift my spirits.

The initial major milestone I reached at home was graduating from speech therapy. Since I was first hospitalized on January 7th, I had been working with a speech therapist at least once a week. Each week, the therapist would assess my progress and give me new exercises. Now that I was cleared to eat and drink normally, the therapist visited me one last time and determined I no longer needed her care. This felt amazing! I was able to eat normally again, and my speech was nearly perfect, with only my wife noticing any minor impairments.

I still had regular visits from a physical therapist, a nurse, and an infusion nurse, each seeing me at least once a week. Additionally, our pastor and sometimes other friends visited daily. These visits kept me busy and active. The exercise I got from walking around the house, going up and down the stairs, and occasionally walking to the mailbox with my physical therapist was making me stronger every day. I had stopped using the walker after my first break at home and was now just using a cane.

I was becoming more mobile, but my blood pressure was very low. I would get tired and lightheaded easily, requiring me to be cautious when standing and moving around. Now that I was eating normally and moving around the house more easily, blood pressure became the latest big concern. Every morning, I had to weigh myself, take my temperature, measure my pulse-ox, and take my blood pressure. This information was entered into an electronic medical tablet and sent directly to a nurse. She would receive the results and call me almost immediately, wondering if I was still alive. My blood pressure was always hovering around 80-90/50-60. I’ve always had blood pressure on the low side of normal, but now with cancer and a low body weight, it was concerning. Every day was a battle to bring it up. My wife was tasked with hooking me up to daily IV saline, which took four hours to infuse. This helped stabilize my blood pressure.

My body needed more weight to hold more fluid and increase my blood pressure. All I could do was eat and drink. Oddly, the filtered water at home now tasted awful to me, so I added hydration packets to all my drinking water. I needed the salts and minerals anyway, and it disguised the water taste. My calorie goal was 3000 per day, which was very hard to achieve. I ended up eating about 2000-2200 calories orally and supplemented another 700 or so calories through my PEG tube. When I took in food through the PEG tube, my body didn’t register that I was getting nutrients, so I didn’t feel stuffed. I was hitting my calorie goal and gaining weight. By the time I went back into the hospital for round three, I had met my weight goal of 143 pounds. I also stopped using the cane around the house, another big win.

It was now the end of February and back to HUP I went for round three. This time I walked in! I had the cane with me for extra support since walking around the huge hospital was indeed way more work than walking around my home. Nevertheless, I was walking into the hospital this time feeling like I had just conquered the impossible.

My oncologist was excited to see my progress. He said, “How do I know this is working? Look at you.” We went over things again about how he still wasn’t 100% sure I had Burkitt’s Lymphoma over the other DLBCL lymphoma because it wasn’t definitive on my bone marrow biopsy. He was 99% sure though that it was Burkitt’s and since the chemo regimen I was on was working, there was no need to look further.

My chemo regimen is called R-EPOCH. The letters stand for each individual chemo component:

R= Rituximab
E= Etoposide Phosphate
P= Prednisone
O= Vincristine Sulfate (Oncovin)
C= Cyclophosphamide
H= Doxorubicin Hydrochloride (Hydroxydaunorubicin)

For my treatment, however, they omitted vincristine since it can have neuropathic side effects and I was already experiencing significant neuropathy. They wouldn’t know if these were bad side effects or something I was experiencing unrelated to the chemo. My neuropathy included numbness in my feet, face, mouth and other areas.

After experiencing so much nausea during round 2, I was very concerned about round 3. I was worried about the chemo side effects getting worse. I’ve seen a lot of people online saying each round hits harder, either because the dose goes up or the effects just pile up. This time, my dose stayed the same. The doctor felt my blood counts were getting depleted enough and raising the dose wasn’t necessary. For reference, the R-EPOCH is infused 24 hours per day over a 4-5 day period. Being nauseous for 5+ days straight is a pretty horrible feeling and one that I dreaded.

Round 3 wasn’t as rough as I expected. I had some nausea, but the medications helped a lot with that. My appetite wasn’t great, but I made sure to eat something anyway. Although I was cleared to eat normally at the end of my second round, the PEG tube was still in my abdomen, so I continued using it. It was helpful for calorie intake when I felt too sick to eat orally. With my weight and energy levels up, I was able to start taking longer walks around the hospital, and my blood pressure was slowly improving. However, I was still on daily IV fluids to help my blood pressure, and I would remain on them for quite some time.

Even with the constant nausea, I did enjoy ordering take out from some of the great restaurants in Philadelphia. I also ordered delivery from Whole Foods. I felt a sense of normalcy, and the ability to eat food again made me excited.

This round was the first where I would get only one lumbar puncture (instead of two). Although it was determined during my first hospital stay that I did not have lymphoma in my CNS (central nervous system; brain and spine) I was still scheduled to get a total of 8 spinal injections of Methotrexate. This is done as a preventative measure to be sure to kill off any rouge cancer cells that may travel to the CNS. Regular chemotherapy does not easily cross the blood/brain barrier and therefore the Methotrexate is delivered directly into the spinal fluid. I had 2 lumbar punctures during the first two rounds of chemo. I was relieved a bit to know that going forward there would only be one. The lumbar puncture gave me the most anxiety.

By now, I had shaved my head, and my eyebrows and eyelashes had already thinned. The hair on the rest of my body was beginning to fall out and thin too. I was really looking like a full cancer patient now. Additionally, my skin seemed to be dying off. My wife called me a snow globe. Each day when I’d change my dark underwear and dark sweatpants, they would be covered in my flaky skin.

I was able to walk much faster around the hospital hallways. I used my IV pole as my support and gave up the cane. I took as many short walks around my floor as I could. This helped to flush the chemo from my body, strengthen my legs and get me closer to normal.

During this chemo round however, my red blood cell count significantly dropped. While in the hospital, I needed another bag of red blood cells. This, of course, set the treatment back by several hours, but it’s all part of the routine. Soon enough I completed the 5 days of chemo and was cleared to immediately go home.

Takeaway: Embrace all the little wins. There are always setbacks, but every small achievement is one step closer to the end goal.

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Continue reading Part 8 — https://vincepaton.com/2024/04/03/cancer-journey-round-four-chemo/

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