There are something like 16 rounds of three-day treatments planned for the clinical trial I’m in. On Wednesday I started round three.
It’s early in my treatment, and there is a long way to go, but there seem to be some basic patterns emerging in terms of what the cancer/chemo/study-drugs are doing to my body, and how I feel afterwards. Sharing these patterns with you may help make the treatment more relatable and explain why I’m ignoring your text. It’s not you, it’s me. It’s the hangover days.
I’m on a 14-day treatment cycle. The first three days of the cycle are treatment days followed by 11 days to let my body recover from the chemo. The way it hits me so far, falls into three distinct phases:
Treatment: Days 1 – 3 (Wed – Fri)
Hangover: Days 4 – 7 (Sat – Tues)
Feel Good: Days 8 – 14 (Wed – Tues)
Treatment Days (Wed – Fri):
The three treatment days are the start of the cycle. This period is also when we get lab results, review scans, and meet with doctors to assess where I am and what if any changes we want to make to treatment. The schedule for these three days looks something like this:
Day 1 (Wed) in Nashville – Lab work, doctor meetings, 4-5 hours of infusions, connect to portable pump.
Day 2 (Thurs) in Memphis – 36-hour portable pump infusion continues to work, but I can be mobile and return to Memphis.
Day 3 (Fri) in Nashville – Afternoon infusion lab disconnected from pump, 1 – 2 hours of infusions, discharged.
The actual treatments are not bad. I sit in a medical version of a Lazy-Boy for 5 – 6 hours, respond to emails and write blog posts while they pour various concoctions of chemicals into my chest port. I’ve worked out of worse coffee shops in my time. That said, the level of service and care at Vanderbilt is outstanding and unlike anything I’ve experienced at any coffee shop or medical facility. The team there is well-coordinated, effective and thoughtful.
Hangover Days (Sat – Tues):
The chemo hangover starts Friday night like clockwork. The hair of the dog is not advised for this one. For me, the four-day hangover includes nausea, fatigue, GI distress, and depression. I feel fragile and don’t want to see or talk to anyone. I want to hole up in a dark room, sleep and listen to audio books and PBS space theory videos and lectures on YouTube.
I’m working hard on figuring out ways to reduce this to three days. Exercise, food and lots of water and juice help. The good news is that the hangover abates just as suddenly as it sets in, and on Tuesday afternoon/evening the clouds part, and I start to feel better. My depression lifts, the nausea is more manageable, and I notice a significant boost in energy that carries me into the next phase.
Feel Good Days (Wed – Tues):
These are the best and in a way the most stressful days. I’m pain free, genuinely feel like myself and have close to pre-cancer levels of energy. This is the time that I should be the most focused on healing and recovery – packing in calories and nutrients, exercising daily, spending time with family and friends, and also getting the most work done.
These days can be stressful too. I feel good and I see all that needs to be done, so much that was neglected over the previous seven days. Calls and texts to return, people to see, work to make up, the health interventions that need attention. It is hard to fit it all in and still get the rest that my body and mind so desperately need.
While this has been the pattern I’ve experience so far, my doctors remind me this will likely change. If we stay here, this pattern is totally doable for the next six months. We are working to minimize the hangover period and make the most of the times when I’m feeling good.
Finally, it needs to be said that this pattern would not be workable without the support and love from our friends and family. There is a beautiful side of cancer that I frankly didn’t see coming, and that is the love, compassion, thoughtfulness, and hospitality we have witnessed from our friends, family, and even strangers. It is humbling and brings tears when I think about the meals, juices, notes, videos, texts, care packages, hospitality, and all-around kindness, prayers, and meditations that so many people have sent our way. This topic deserves its own post and will get one, but it is also why we are able to do what we are doing above. The outpouring of support has made a permanent impact on my life.
A simple thank you feels hollow, but know that we are grateful.
Tommy