Today is day seven of chemotherapy. I counted yesterday that I have 25 weeks total of this process. One down, twenty-four to go. I have been feeling well for the most part. My energy is a little heavy but for the most part I have been well. This week Jenn and I have discussed that this experience is a lovely practice of forced mindfulness, from managing my ostomy bag to the neuropathy of my hands and throat. It is amazing how much I think about where bathrooms are, how I wash my hands, what I touch, and what the temperature is of what I eat and drink.
We went on a hike yesterday morning (where I took the photo of the dry creek bed above) and I realized half way through the hike that in the future I need to have some tissues and hand sanitizer with me in case I have a high output in my ostomy bag half way through a hike with no facilities close by. Also when I use the bathroom at home I have come to the habit of running the water while I am using the toilet so the water is warm enough for me to wash my hands when I am done. I have to plan cleaning my refrigerator with my daughter today so she can grab things out for me so I don’t get over exposed to the cold. This is a HUGE practice of slowing down, being mindful and planning.
It is also difficult to plan much ahead which seems like a lesson in letting go as well as slowing down. I kind of feel like everyday I am not quite sure what I will feel like. I might be tired, I might be ok. I feel like I am still in the waiting and mapping phase of any cycles or rhythms that may show up. In two weeks I start round two of eight of chemo. Will it be better? Will it be worse? How much of this is accumulative? I am not going to sugar coat it, the first infusion was very hard and I am afraid to do that again but I felt ok that night and the next day. Two days after the infusion I couldn’t get out of bed until 1pm. Will that happen again or will it manifest different? There is a lot of uncertainty.
In this mindfulness practice one of the things we have had to look at is how we fly through our day-to-day. I am a person who has usually has two to four jobs at a time. A friend has described me as a shark meaning if I slow down I will die. She was not too off the mark. I am usually drumming up new projects or jobs but I don’t know if that fits the life I have right now. I do believe the universe is trying to yell at me “Reign it in sister!”. I am chosing to finally listen and learn.
It is odd to think of what my life was before July 5th. I was very busy everyday with my message practice, my organizing clients, meetings for the forming Michigan Prison Doula Initiative, kids, keeping the home going – goodness it is a lot to think about. Jenn was working and had been on-call for a significant chunk of time and I remember her starting to feel worn down.
Then one day it all had to stop.
I couldn’t work.
I couldn’t parent.
I couldn’t go home.
Jenn stepped out of work to be with me.
Here we are about eight weeks from that day. Jenn went to work today. I am home thinking about what I want to path moving forward to look like. I do not want to be that busy again and we are taking steps to make it so we don’t have to be. I may try working only one job, which happens to be the dream job of my career, Doula Program Director of the Michigan Prison Doula Initiative, that in odd timing just came to be a possibility this summer. My ego is having a hard time letting go of the other things I did even though deep in my gut I know that is what I need and want to do.
By trimming down on the projects and jobs I am giving myself more time to focus in on what I really want to do and do it well. One thing I want to do well is family. That means being around and present for our kids, and Jenn, and my parents, and nieces and nephews. I am also learning through the act of receiving, how to be a good friend. It is amazing folks that have come out of the woodwork to help us, bring meals, send care packages, text to check in, messages on social media, send flowers, and even randomly drop off anonymous flowers on our front porch weekly. I am learning from others how to be a better friend and neighbor. Jenn and I are taking notes on how we want to pay these generous acts forward in the future but to do so effectively we need to slow down also. As the school year is starting, which always feels like the “real” new year to me, this is a perfect time to reassess and create new pathways for how we walk through the world – healthy, whole, and mindful.
The River Flow
There is another collection of thoughts that have been weighing on my mind this week. The genesis of these thoughts started with a conversation Jenn and I had with another couple at the infusion clinic when I was getting an IV drip the day after my infusion. They were older, maybe mid 60’s. He was getting his infusion and had a quiet manner to him. His wife was sitting next to Jenn doing a word search. Since we are there for two to three hours we can’t help but start chatting. My story and his had similar beginnings of stage three colon cancer caught out of the blue in July although his journey started July of last year. He has laparoscopic surgery to remove 16 inches of his colon. He then did 12 rounds of chemo with the infusion pouch, not the pills which is the path I chose. The next part of his story that has sat with me all week. After his stage three diagnosis, surgery, and chemo he ended up getting diagnosed with stage four colon cancer this summer. I know his story will not be my story but it did put me in check. Just as randomly I got the cancer and just as randomly did we catch the cancer, it can just as randomly take another hard turn. There was an immediate shift in how I viewed that man, it is like I could see the sand slipping through his hour-glass. His heaviness had more definition to me, my mind running with wonder what he must feel like on his path. It took a couple of days for my brain to sit with my emotions about hearing his story and let them out. Both Jenn and I were a bit rattled by his story in a “That can happen, eh? Huh.” with a quizzical look on our faces. That man has been in my thoughts, as have the people I know who have lost this battle, or even won the battle once or twice to then lost. I think of them now with a bit more contemplation and perspective even though I still have not idea what it feels like to be in those shoes.
Yesterday while Jenn napped next to me I was resting but my mind had some things to work out apparently. I lay on the bed looking out the window listening to the outside noises when a vision came very clearly to my mind of me at my end laying in a bed saying my goodbyes. I wondered what words I would say to my kids. Noting that the weight of them would be lasting memories. I remember noting the feeling of “The kids will be ok.” As a parent I feel like much of our job is to prepare to let our kids go onto their own lives. Although they are always our children they will fly from the nest and make their own worlds. They will be ok.
Then in my vision my attention turned to Jenn and this is where I lost it. I could think of no words that I could say to her that would be enough. I just had this feeling – “but we are not done yet in this lifetime”. I could not be with that vision anymore so I stepped away from it.
I am very optimistic that I am curable and these conversations will not be part of my story at least not anytime soon. But I am learning to honor the thoughts and feelings that are present and allow them space to move through me as not to get clogged up in my body somewhere unattended to and festering. It is a fine line to be optomistic and positive and honor our emotional human-ness but not get bogged down by it. It is like a river that needs to flow on muddy days and on crystal clear days. I kind of feel like my tumor was an emotional dam in my colon of all the shit I held in and put up with as I plowed forward in life. No more. That is not an option. It is time to reign it in and get healthy.