Before going back to the hospital for my second round of chemo, I was home for nine days— a few more than originally scheduled. Those nine days were a much needed break after I had spent 21 days in the hospital getting poked, prodded and barely sleeping. I went through a bone marrow biopsy, PICC line placement, countless blood draws, IV antibiotics, CT scans, MRIs, 3 lumbar punctures, getting a feeding tube shoved up my nose, 5 days of chemotherapy, 7 bags of platelets and 3 bags of red blood cells, and finally the incredibly painful PEG tube speared through my abdomen. It was totally warranted for my doc to say, “I’m going to give you a few extra days at home.” Typically, the R-EPOCH regimen is given 3 weeks apart from the first day of treatment, but the doctor was ever so kind to push round two back by 4 days.

I came home on January 27th, weighing 131 pounds—41 pounds less than my normal weight. My hair had started to fall out, so I asked my wife to shave my head. After that, it was time for a shower. It had been about three weeks since I last bathed, apart from the occasional sponge bath. I was physically exhausted, but I knew a shower would feel good, even if just for a few minutes.

As I got undressed, I caught a glimpse of myself in the mirror. I looked like I had just been released from a WWII concentration camp. I didn’t even recognize myself, and I started to cry. I felt I had lost more dignity, being so skinny, bald, and having a feeding tube running out of my abdomen.

I continued on with prepping for the shower, which was to cover up my upper arm with a plastic sleeve and tape, to protect my PICC line dressing from water. My shower was incredibly unenjoyable as it was hard to stand for more than a few minutes, and I didn’t want to fall. I ended up sitting on the bench in the shower with a cushion that helped protect my bones from the cold, hard marble surface. My body was freezing in the shower, even with the hot water running. I put a space heater in the bathroom cranked up to 85 F, and I was still cold when I got out. However, I was able to put on the amazing robe my sister sent me and that was a life saver.

I was determined to get myself stronger and enjoy time with the family, but as luck would have it, my 7 year old son tested positive for Covid on January 28th. This was bad timing. My wife locked me up in our bedroom, locked our son in his room and planted herself in the spare room. I wasn’t very mobile so staying in my bedroom was fine by me, but the thought of getting Covid or a cold on top of cancer was enough to make me terrified. Being mostly alone in my bedroom forced me to do things on my own sooner than I may have otherwise. My wife didn’t enter our room much and when she did, it wasn’t for long. I had to take care of myself as much as possible, but the upside is this helped build my strength back quicker. I had a TV, a walker, a cane and liquid meals on an IV pole. My recovery was well under way. My son was not too pleased with staying in his room for 2.5 days, but he managed to achieve the impossible.

By the end of my 9 day break, I was feeling a bit like a human again. I was using only a cane to walk (slowly) around my house and I was eating via the PEG tube, so I actually gained a few pounds. I was speaking pretty well and overall my symptoms were much improved.

For the first round of chemo, I entered the hospital on a stretcher in very bad condition. In contrast, for the second round of chemo, I entered the hospital in a wheelchair and in much better condition. I brought my cane with me and was determined not to use a walker at all. I also had my seat cushion, toilet seat, new slippers, humidifier, air purifier, blankets, heated clothes and a new mattress pad for the hospital bed. My frail frame could not take one more day on a brutally uncomfortable hospital bed. I was developing sciatica and a very sore tailbone from laying down so much on such a horrible mattress. It was early February and still very cold in Pennsylvania. Luckily, this time I was in a room that was warm! I checked into my room and sat in the big chair while my wife unloaded all my gear. She made the bed with my fancy mattress topper and set up the humidifier and purifier. The nurses were super impressed with my set up.

When I checked in, my first blood draw showed I needed a bag of red blood cells before anything else could start. This process takes hours. They drew blood, realized I need an RBC transfusion, the doc ordered it, they did a ‘type and screen’ which took hours, then the blood came from the bank, and finally, it took a couple of hours to infuse. This whole process set me back many hours. By then, my wife had left for the evening, and I was starting chemo at midnight. Cue the all-night beeping and interruptions.

While the side effects were mostly mild during the first round, I experienced more nausea during the second. In fact, as soon as the chemo started running into my arm, I felt nauseous. This persisted the entire week. Luckily I had the PEG tube in place so I could get calories without actually eating. The PEG tube is a plastic tube that is inserted through the abdomen wall and into the stomach. Since I was unable to eat food due to loss of motor function in my swallow muscles and tongue, this was the only way I could eat. (Most likely lymphoma tumors were pushing on my cranial nerves and affecting my tongue and swallow muscles.) The plus side is that when one is nauseous from chemo, calories can still be delivered directly to the stomach. For some reason my nausea worsened when I saw food that my wife was eating, but looking at the liquid meal hanging in a bag on an IV pole and seeing it go into my stomach didn’t bother me. In my case, these calories were very important so I didn’t lose anymore weight.

While the PEG tube allowed me to have food, the syrupy substance pumped into the tube wasn’t the healthiest choice. Think about what your doctor tells you not to eat: how about corn syrup and canola oil? Yes, the first three ingredients in Nestle Nutren are corn syrup (really bad), canola oil (extremely bad), and soy protein (pretty bad). For good measure they also add in a vitamin and mineral mix. I ranted (nicely) to the nurses about how this isn’t the best thing to give cancer patients. But it seems this is the way it has been and there’s no changing their protocols. Also lymphoma loves sugar. In fact, for the PET scan to detect lymphoma in the body, the patient is given a radio-labeled glucose analogue as a tracer. Lymphoma eats up glucose much faster than any other cell so they will light up on the scan. Ok, then why give me corn syrup? Ultimately the Nutren gave me calories and kept me from losing more weight so I can’t complain. I can only appreciate.

Nausea and all, the 2nd round wasn’t as bad as the 1st since I was able to walk using a cane. I could more easily get out of bed and sit on the chair or the sofa. Although I needed my extra seat cushion for sitting since I had no more fat or muscle on my legs or gluteus. It’s very painful just sitting on bone. I was still moving slowly and cautiously. I wasn’t doing laps around the hospital floor yet, but did make it to the lounge down the hall everyday. I walked with my IV pole and had my wife or a nurse by my side. My legs were skinny toothpicks and I got tired so quickly. My feet moved like an 80 year old.

I was also enjoying sitting on my sofa in the window each day during the peak sun. I had the lights on this time. I was watching TV and chatting with my nurses. All I wanted to watch on TV was Shark Tank and ironically, cooking shows. I just laid in my bed admiring all the wonderful dishes that were on the screen in front of me. The TV visual of food didn’t bother me for some reason, but seeing real food or smelling it would make me nauseous. Eggs were on my mind as was rye bread and cream cheese. I thought these things would be my first meal when I could eat again.

A doctor mentioned that there was a risk I would never be able to eat again, but he felt that I would most likely recover. Nerves are tricky and no one really knew how badly the nerves were damaged by the lymphoma. I was making so much progress in other ways, that I held out hope that I would eat again soon. Already I had achieved milestones. I was back to walking and my bone pain was gone. The excess amount of phlegm in my mouth and throat was less and I was able to brush my teeth and care for my mouth almost like a normal person. My tongue had improved enough that anyone could understand me and my speech was only slightly impaired. I was determined to go home eating with my mouth.

I was working with the speech therapist to help exercise my throat muscles. I chewed on ice and did various exercises. It seemed like I was making progress, both in my speech and the swallowing of tiny bits of water. On the day before I was to go home, I had a “swallow test” using x-Ray+barium– and I passed their criteria to start eating again! This was amazing. It had been over 4 weeks since I had food in my mouth. It wasn’t easy to eat but it was still a great gift, a huge win and I am so thankful.

“Whatever Is Taken for Granted Will Eventually Be Taken Away.” Of course I took many things for granted. But I never thought to appreciate chewing and swallowing food, until I no longer could. I would watch TV in the hospital room and be in awe of someone eating. I binged the entire season of Stanley Tucci touring Italy, and there was so much eating, really good eating. I had dreamt of my first meal, but alas, hospital eggs were the best I could do for that first meal. I had no appetite because of the nausea, but I took a taste and not much more. Even though I was officially allowed to eat for the last two days of my chemo round, I really didn’t eat anything. I had no appetite at all.

It wasn’t until a few days after being back home when my appetite came back. Then it came back in a big way. I was eating heavily. I targeted 3000 calories per day and I managed to gain a few pounds during the recovery period. My goal was to be 143 pounds for round 3 and I achieved that goal.

Takeaway: Reserve some time each day for appreciation.

I truly appreciate: eating, swallowing, not choking on saliva, not having sleep apnea due to throat muscles being impaired, walking, talking, and so many other things I appreciate like never before. Thank you, thank you, kind medical staff at HUP and all of the countless doctors and researchers who have dedicated their lives to saving others.

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Continue reading – Part 7 – Chemo Round Three

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