Chemotherapy - UGH!
- Brenda Smith
- May 17
- 7 min read
Greetings Friends,
Wednesday, May 14th - First Day of Chemotherapy
It's been a tiring day, but a day of accomplishments that surprised even me! Per my doctor's recommendation, I ate a hearty breakfast before heading over to get my first dose of chemotherapy. Monica and I picked up seven bottles of medications at the hospital pharmacy that I'll need to take during this trial: two anti-nausea meds, two antibiotics, an anti-viral, an anti-fungal and an anti-seizure medication.
At 9 am, we met with Dr Piquet and vivacious redheaded Timber, one of her research assistants, to review more paperwork and test results. Dr Piquet approved me to start the depletion of my immune system by two chemotherapy drugs. Next, I had a visit with PT Rob for my walking tests. I told him I thought of him as Darth Vader because of the difficulty of the two walking tests he required on my first visit. I wondered if he wanted to kill me. One of his tests required me to walk as far as I could in six minutes. I could only walk for a bit over four minutes before my muscles seized, my heart pounded, and I gasped for breath. It really traumatized me. I dreaded repeating this test.
I talked with Kaly, my PT in Maine, about my fears and how to approach this walking test I had to do again. She recommended going really slowly, listening to my body, trying not to get out of breath or stressing my heart. Our conversation brought back memories of my strenuous climb up Mt. Kilimanjaro in 1981. There, my guide urged, "Po le, Po le" which translated to slowly, slowly. Rather than forging ahead, then stopping to rest every few minutes, he insisted a consistent pace will always succeed over a stop and go approach.
When the time came and Rob said, "Start," I began my leisurely stroll, counting the tiles on the floor as I moved across them. I didn't care about speed, distance or anything except keeping my body as comfortable as possible. When Rob announced "Two minutes," the contraction of my legs muscles pulled painfully on the tendons that connect around my kneecaps, but I had control of my breathing and my heart beat normally. At four minutes, all my leg muscles hurt from contraction, as the stiffness inched its way up my lower back muscles. My breathing become slightly labored and I could feel my pulse quickening.
It amazed me when Rob said, "Five minutes," just as I reached the end of the hallway for the second time. That meant I'd already walked longer than I had on my first trip's test. Turning around, I set my sights on my Zinger at the far end of the hallway. About halfway back, panting and my heart pounding, I heard Rob start his countdown. "Fifteen, fourteen, thirteen." Did I have enough gas in my tank to stay standing? My chair seemed impossibly far off in the distance. Determined, I plodded on. "Three, two, one." Wahoo! I'd done what I hadn't thought possible. I collapsed against the wall and grabbed a railing for support, while Rob raced to get my Zinger.
With that obstacle overcome, Monica, Timber and I headed over to the Cell Therapies Infusion Center in the Cancer Pavilion. Before getting chemo, they needed to check my blood component levels and other vital minerals and enzymes. Timber brought 14 vials needed by the trial sponsor, while the nurse at the infusion center had 9 more vials to draw. She accessed my port, waiting patiently for each vial to fill. She remarked, "I think 23 vials drawn at one time might be my personal record." (as of 5/14 cumulative total - 94 vials)
We had to wait about an hour for the blood test results. Meanwhile, the infusion center discovered they didn't have the part of the consent form I'd signed with details about the chemo drugs they'd use. Those pages had to be chased down before the pharmacist could mix up my chemo cocktail. The Cell Therapy Physician Assistant visited asking more questions about my health. We also talked about the potential side effects of the two chemo drugs. The most commonly occurring effect is fatigue, followed by nausea, and low blood cell counts. Oh, and don't forget hair loss, which usually happens 2-4 weeks after treatment.
Once the chemo drugs arrived, they infused a bag of saline to help me stay hydrated and gave me an anti-nausea drug call Zofran. They also wrapped me in a warm blanket. When the saline bag had emptied, they connected the first chemo drug, Fludara, to the line into my port and let it run for 30 minutes.
I waiting to feel a difference as the drug circulated in my body. Nothing felt different. Then my nurse connected the second chemo drug bag, Cytoxan, which took one hour to empty. When the treatment ended, I felt no different than I did when it started. Success!
Monica and I celebrated by going for dinner at an Ethiopian restaurant. I love injera and vegetable wats. Monica had never tried Ethiopian food. Because we were early, we had the restaurant to ourselves. Monica told me she enjoyed trying something new, but it didn't rival her favorites-lobster and BBQ ribs. I took another anti-nausea pill before going to bed and slept soundly for eight hours.
May 15th - Day 2 of Chemotherapy
Thursday morning I felt great and with more energy and less anxiety than the day before. After breakfast in the hotel, we headed back to the hospital for my second day of chemotherapy. This morning, they only required three vials of my blood for monitoring. (as of 5/15 cumulative total - 97 vials)
My infusion nurse, Julie, reviewed my medical records, the latest test results, and followed the same procedure as on Wednesday. She hung a bag of saline first while waiting for the pharmacy to send the chemo drugs to the infusion center.
When the drugs arrived, she connected them to my line. Fludara, first, for 30 minutes.
Then, Cytoxan for an hour.
After the first drug, my fingers felt like ice cubes, so Julie wrapped my arms and hands in gloriously warm blankets. While getting my chemo, Monica sat beside me in the cramped chemo bay, preparing for her upcoming trips to Spain and South America by diligently studying Spanish. Once the chemo treatment ended, we both needed food. No better time to head to one of Monica's favorite restaurants - Grammy's Goodies. She chose their whopper sized hot dog in a grilled ciabatta roll with grilled green peppers! I did not photo shop this picture. It really is that big!
I ordered their Italian sandwich, which also provided two meals and reminded me of my favorite Captain Jack's Italian sub at R&R Bistro in Wells, Maine. Despite my worries about chemo side effects kicking in, I slept well.
May 16th - Day 3 of Chemotherapy
At breakfast in the hotel, nothing really appealed to me, but I knew I had to eat something.
Usually, I'm a lover of savory rather than sweet foods. But this morning, acting out of character, I decided on a waffle with strawberry sauce and maple syrup. It tasted way better than I expected. Could chemotherapy be altering my of tastes?
This morning, they only required two vials of my blood for monitoring. (as of 5/16 cumulative total - 99 vials) when we arrived at the cell therapy unit. My nurse, Ashley, started the saline infusion while we waited for the chemo drugs to arrive. Already, I felt off today, in part because the anti-nausea drugs had their own side effect of clogging up my internal plumbing. Also, the promised fatigue had arrived, so I just planned on napping during the infusion. The protocol for nurses handling the chemo drugs is to wear a mask and gown and two pairs of latex gloves to prevent themselves from being exposed to the toxic liquids.
After the lead nurse primes the pump and I'm ready for the infusion, a second nurse must verify my identity, the medication and dosage, and the proper connection of all equipment. Hannah provided the verification check for me.
I wish I could report smooth sailing through the third treatment, but I had moments of nausea and pain in my abdomen that I hadn't experienced during the first two days. Nonetheless, I got through it. Monica decided we should get lunch at a nearby Morrocan restaurant I'd mentioned wanting to try. I got a lemony flavored chicken tajine with couscous. It would be kinder to my stomach than BBQ or Mexican, for sure. I only ate part of it and brought most of it back to the hotel.
The nurses recommended picking up some Miralax to help with my plumbing problem. I texted and got Dr Piquet's approval to take it. She admitted it seems to be a common issue with her patients, ending up with either constipation or diarrhea. What a choice! I'd prefer neither.
By the time we arrived back at the hotel, I felt wiped out. I could barely stay awake until 7:30 pm, when I climbed into bed, before the sun had even set. I slept just shy of twelve hours. One would think that I'd feel better after that much sleep, but the chemo side effects had taken hold and I woke feeling like a three generation old Raggedy Ann doll. Oh, the joys!
I'll be checking into the hospital tomorrow with Monica's ever present and much appreciated help. As crappy as I feel now, the next week will be tough, so I'm not sure when I'll feel like blogging again, but I'll do my best to keep you with me on this challenging journey.
As always, I can't thank you enough for your well wishes, emails, texts and cards. They mean so much to me. It's so nice to know I have a whole community of people cheering me on. Love you all!