Breathe and let it all flow through you. This is a mantra I must remember and repeat as my body goes through this journey.
I am realizing that chemo is not only a test of my mindfulness but also a full body experience of meditation. As I have been taught, regarding meditation, the focus is not that we do not have thoughts but that we allow the thoughts to flow through our minds and not attach focus onto any. In my minds eye, I have always pictures a big conveyor belt that holds the contents of my brain. My job is to just let them pass me by. With my chemo I am finding that I need to allow the sensations of my body to just exist without attaching emotion or sense to them. If I attach emotions, try to fix or explain what I feel it brings a power to the sensations that is not helpful for me.
My infusion last Tuesday went well. The side effects of neuropathy and muscle spasms were present immediately and more intense than last time. Overall though a better experience. Wednesday I was still feeling alright except for the neuropathy and muscle spasms. I had a acupuncture appointment that afternoon with my wonderful friend Abby Humphrey. I have had acupuncture in the past and have found it helpful but never have I had such a pronounced improvement on an ailment. My neuropathy improved at least 80% after my one hour accupuncture session with Abby. I still needed to wear gloves and not touch or drink cold or room temperature things but the improvement was magical.
Then came Thursday and Friday. From my experience during the first infusion I guessed that two days after my infusion would be my down day but this time it was a bit heavier and lasted a bit longer. This anticipation of my down days reminded me of when my kids would get the stomach flu. As a parent giving frontline support and assistance you could not deny the fact that there was a high chance that you will also be afflicted with the flu in the near future. The knowing of the upcoming demise of ones wellbeing is familiar in that sense. With the flu at least I thought I might have a chance of avoiding affliction through supplements and cleanliness. With chemo there is nothing really to stop the reality of the down days. Since I cannot stop it the only choice I have is to become friends with it and reframe the experience.
This time I was not only tired but also felt like a wet metallic blanket was draped over my body. I am not quite sure how to explain the ‘metallic’ descriptor here but that is the best word I have for the sensation – a grey thickness perhaps, heavy and toxic.
Most unsettling to me may have been the shift in my appetite. Food is very important to me. I love food. I eat most anything and will lovingly refer to myself as a human garbage disposal. I am not used to not having an aversion to foods but that is very much a part of my days. Unfortunately some of my favorite foods now make my mouth water in repulsion – the delicious juiced veggies, apples and ginger that Jenn and I make, the Tom Kha soup at Tuptim, and many others. I am craving bagels, my daughters homemade tuna salad, pb&j on wonder bread, a #13 on challah from Zingerman’s Deli, pizza, Combos, and many other comfort foods. I do believe I consumed more bread product just last week that I normally would in a month.
Not only has my appetite become fickle but it is accompanied by a very strong and irrational sensation of hunger. I have been very fortunate to not have felt hunger much in my life and when I do get the hunger feeling I would be able to satisfy it with eating. The hunger I experience with the chemo is not the same beast. It is a stubborn sensation and frequent. For example yesterday Jenn and I had a hearty breakfast at 9am. After temple service at 12:30pm I was ravenous, I would have thought I had not eaten in the past 24 hours the way it felt but it had only been a little over three hours. I spoke with another friend last night who has gone through chemo and she shared that she also experienced this type of hunger with her treatments. Her suggestion was snack on PB&J until you figure out what else to eat. Also to eat heavy foods – breads, cheese, creamy soups – seemed to help “weigh down the stomach”. This is counter to how I usually like to eat for my body so I am still working with solutions. Although I am not disregarding the suggestion. When it comes down to it I will eat what works in the moment.
Thursday, Friday and Saturday this week I did much of nothing. There were times I wanted to knit but the muscle spasms in my hands plus the knitting needles being to cool for me to touch negated that activity. My mind seemed too foggy to read and keep track of information. I did not have energy for any physical task. I was at a bit of a loss as to what to do other than just sit and be. One day I did just sit in my hammock most of the day dosing in and out of naps. I have to be totally honest my attitude did take a turn. I would get teary in the morning lamenting my general malaise. My mantra became “Chemo is Stupid”. These were not my best moments but they are mine to learn from.
When chatting with my mom on Saturday, when she delivered a loaf of Wonder Bread, strawberry jam and Jiff natural peanut butter, I was sharing with her how I had been feeling crappy the past few days and how I was not dealing with it well. My mom listened lovingly and then in her most supportive tone she said “It sounds like you need an attitude check.” These are words that I have heard throughout my life and passed on this phrase to my children and even my wife. With my kids I incorporated an “restart button” which was located somewhere on the body, usually on the chest or the arm, that indicated an attitude check was in order. My mom was right I needed an attitude check.
In reflecting on this time I did make a decision to pull myself up by my boot straps and get back on track. After my healing period from my surgery and before chemo started I began to walk three miles a day. Following my first infusion I let the walking habit slide as the weather got very hot there for a bit and I just didn’t feel like it. Although in place of walking I did start a daily yoga practice that I love. I was not able to go last week other than Monday but I am able to go back today. Moving forward I am going to make a focused effort to walk my three miles and do yoga everyday that I can. If I can’t walk three miles I will walk as far as I can. I do have an inner struggle committing that much time to my body and wellbeing. This inner conflict does not quite make sense to me cognitively but emotionally it is there. I am hoping to let go of that struggle sooner than later because I know it is very important for my health and wellbeing. I feel like I should be cleaning, working, or “being productive”.
Yesterday Jenn and I sat on a park bench after temple and we ended up checking in about the previous week. As a couple are also learning how to navigate these times together. Through the week she was trying to give me space and all I wanted was closeness and her humor. For some reason we could not talk about how we were feeling while it was happening but we both felt so much better taking the time to check in and be honest with how the week went. We were able to be vulnerable and hold space for the other persons experience because really we are both going through this. In the same conversation we talked about trying to check in with the language and tone we use when talking about what we are experiencing. We are exploring how to speak of chemo or cancer or whatever without projecting a negative tone. Our foundation in this idea is a saying that came across our path earlier this year at temple – “It is not good. It is not bad. It just is.” My cancer was not good or bad – it just was. My chemo is not good or bad – it just is. My hunger is not good or bad – it just is. My appetite is not good or bad – it just is. My tiredness is not good or bad – it just is. My PB&J is not good or bad – it just is. All things just are what they are. We can load them them with emotions, thoughts and labels or we can just let them be. I need to remember to just let it all just be and to breathe.
Restart Button (aka Attitude Check): Saturday evening I told Jenn that we were going to wake up early on Sunday and go for a hike in Cherry Hill park. She agreed. Sunday at 7:30am we headed out with the puppies to the woods. We saw 7 deer, a black squirrel, mushrooms growing in the mulch, goldenrod and we heard what we couldn’t tell if it was a bird or a frog but they had a nice song. Everything was wet with dew and no one else was at the park. The dogs ran off leash for a bit and had all the sniffs in the world. It was a really beautiful morning in the woods.