I am more than my body
I think I’m finally coming to terms with the fact that my body is not an accurate representation of who I am as a whole. This body is broken. It’s not doing what it should be doing or what it needs to do to make me healthy, but that doesn’t mean that I’m broken. My body is not strong, but I am. I’m learning to let go of this anger at my body for failing me and realize I can move forward with a stronger will to live. As I near the end of my treatment journey I’m focusing on how to assimilate to my life again. I want to have a reenergized passion for everything I have - my family, friends, job, and once the pandemic is over I can get back to my beloved concerts and traveling and all those fun things that used to bring me so much joy. I hope someday soon I’ll awake with energy and enthusiasm to get back out there and live my life to its fullest - if I don’t, then this was all for nothing. I don’t want to lose sight of all that I’ve had to overcome just to be here and I don’t want to take my life for granted anymore.
Okay, enough of that - let’s get caught up. I was able to enjoy the holidays and New Years with my family at home since we delayed my next round of chemo to let my body recover and it was so nice to have more time at home feeling good (not great). New Year was lovely and quiet just the 4 of us watching the Avett Brother live stream concert. I also got to facetime with some of my amazing friends. Eric and I enjoyed another date night that weekend too in preparation of me going back to the hospital. I really needed those extra few days at home and even though my oncologist wasn’t happy about making that decision, I know delaying that round was what I needed to do to keep my sanity after that torturous last round. By the time Wednesday 1/6 rolled around, I felt much more prepared and ready to tackle more chemo.
I had my 5th COVID test on Sunday 1/3 (Negative), then labs on Monday 1/4, then I was instructed to wait at home on Wednesday for a bed to become available at which time I would get a call to come in. That call came at about 2pm and we loaded up the car and headed down that all too familiar path to Anaheim. It was another teary goodbye at the car with the kids and Eric. Since the last round took 11 days, I had to mentally prepare for this one to be just as long if not longer. I knew my oncologist had decided to lower the methotrexate dosage from 3.5 to 3 - but that didn’t seem like a huge reduction. It was hard to prepare for this round. I had never been sicker in my life as I was during my last round and there’s nothing I hate more than being barfy all day. I’ve never been one of those people who can throw up and then feel better - I always envied those girls in college who could puke, rally, and keep partying - that was not me. But I tried to tell myself that maybe this time it wouldn’t be as bad.
It felt like second nature making my way up to the 6th floor this time - bypassing the reception desk altogether. I know almost all of the nurses on 6 East by name and they all welcome be back as we chit chat about the holidays. This is now my 5th stay in the hospital since starting my treatment and I do think it’s gotten easier.
I began again just like last time with a chest X-ray to make sure my PICC line was in the right place and then they work to get my PH level and hydration up before starting the methotrexate. Chemo started at about 11pm Wednesday night and ran till about 1am Thursday morning and I immediately felt the nausea come back. They then wait 24 hours from the time the methotrexate ended to start the leucovorin which will pull the poison out of my system. I get a steady supply of sodium bicarbonate and leucovorin from then on until the methotrexate is out of my system. They test my blood each morning promptly at 5am and the rest is a waiting game. We tried all of the nausea medications and decided that the Ativan is what works best for me. Others are okay, but they can cause headaches, so I stuck with the Ativan every 6 hours this whole stay. Things that can help move the poison out - drinking a lot of water (something I’m a pro at now), talking walks around the floor, having normal bowel movements, and eating healthy foods. I tried my best to stay positive, but sure enough all day Thursday I was sick on the floor of the bathroom. Fun fact - I did get a pity back rub from my nurse as I was barfing, so at least I had more human contact this time. The nausea is just not something I can seem to control. All of the doctors liked to inform me that most patients don’t have this reaction to methotrexate - I’m not sure this information is at all helpful for me. Friday was still pretty rough, although I did manage to keep some toast and jello down. I was also able to get out of my room and walk around the floor a few time each day too. I would set a goal to get out of bed, put in my airpods, find some murder to listen to (thank goodness for early patreon releases of Luminol), and take about 15-20 minutes circling the floor. It was surprising to see how few of us are actually here. This is the only wing of the hospital free from COVID patients now that they’ve stopped all elective surgeries and procedures. Hospitals are very scary places to be right now. As I walked around I noticed only about 10 other cancer patients getting chemo (of course that doesn’t include the chemo patients who just go to the infusion center). There’s always some comfort in seeing other bald peeps around - I try to give a friendly smile as if to say “I’m with you friend”, but not much comes through with the masks on. There’s no socialization between patients up here.
My experience with the nurses this time was great, just as it always has been. It takes a special kind of soul to choose to be an oncology nurse and I’m so grateful for all of the men and women who have helped me and showed me such compassion during my stays here. I feel cared for and less alone because of them. I’ve had many conversations about looking for miracles and staying positive and listening to my body. This isn’t a journey one person can do alone and I’m lucky to have had them with me.
As you may recall, the last round was so excruciating because the methotrexate damaged my kidneys by 50% which was preventing the poison from leaving my body. This time, I’m happy to say, my kidneys have maintained their function. I’ve watched my methotrexate level drop each day starting at 370 on Thursday to 0.91 on Friday to 0.24 on Saturday to 0.15 on Sunday and finally to 0.06 today Monday which means I get to go home today. It only look 5 days to get below that 0.10 barrier where last time it took 11 days to get there. Finally my body did something right! Although that also comes with some bad news. After the last round, my oncologist said that I only needed to do one more round of methotrexate because I had such bad side effects, but this time, since my body responded so much better, they want me to continue with a 3rd round. But then that will be it. That will complete my chemo journey. I’m waiting now to see how much time I’ll get to rest before starting that final round - probably 2 weeks or so. That means I’ll be done with chemo in February then maybe back to work in March. I’m feeling a lot of anxiety over going back to work with my chronic fatigue and chemo brain, but I’m sure my coworkers will help ease me back into that transition. It will be nice to have something else to focus my attention on and I really hope I can rekindle that fire I once had for my career. It would feel good to be good at something again.
