I have had a hard time thinking about writing lately. I have wanted to, but couldn’t. I feel like I have slipped into a bizarre survival mode without direction. I am not sure which direction I am facing or what skin I am in. Most things feel very surreal to me right now, being done with chemo, NOT having a poop bag on the outside of my body, having no routine or rituals to my days, a kid getting ready to go to college, getting ready for spring, my work….. all of it feels very out of sorts.
I am trying to sit in the unsettled feelings of this time of change. Being ok with not knowing at this exact moment, being ok with not controlling what will be, being open to letting the dust settle where it will before I plow forward.
There was something uncomfortably comforting about being in chemo land – I was taking action. Now, that chemo is done, I am sitting uncomfortably in the hope that chemo did what it was supposed to. The scans in the upcoming months and years will let me know if another similar journey awaits me in the future. If it is to be then we will tackle it like we did this time.
I do not miss chemo at all. I do not miss who I was before all this happened even either. Though I am not quite sure who I am moving forward from this experience. I do feel a bit lost.
I AM overjoyed to be on the other side of my ostomy reversal surgery. It went well and I am recovering as expected. Things are not in full functioning order yet but we hope today all systems will be GO (a polite way of saying – we hope I pooop today and we are optomistic). The ostomy bag was more than just an appliance on my body, it consumed my mind a bit more than I cared for or expected. I would like to think that if it were permanent I would have leaned more into accepting it but I did not or could not lean into it. It effected my confidence, my self-esteem, my feelings of attractiveness, it was a bit of a hurdle everyday and I was regularly nervous about accidents. To walk around now with out my “misplaced loin cloth”, as we came to refer to it, has been one of the more mentally liberating things that has happened to me. My wife has been amazing, loving, and accepting – loving me to bag and all. She thought I was sexy and attractive even when I did not. She was mindful to my sensitivity to touches – from my scars (mental and external), to my port, my ostomy bag and now to the healing hole in my belly. (The doctor left the wound open to heal from the inside out which is kind of crazy. We did this last summer with the infection I had with the lower segment of my wound so we are seasoned wound packers. The body is an amazing machine.)
With this surgery the staff remembered us from last summer which was comforting, to see familiar kind faces while being in the hospital for a few days. It was interesting to hear from the nurses how they even thought that our ten-day journey last summer was a bit crazy even in their book and they see this kind of stuff everyday. They were very glad for us that this time was much smoother.
Looking back at the past eight months I am left thinking “did that really just happen?”. I am sure as I heal up and spring comes it will feel even more foreign. There are still CT scans and colonoscopies to be had but I feel that will seem like nothing in comparison to what we have been through. It did happen though and fortunately we are so much better for it.
I need to note very proudly that our kids have been so impressive through this journey. They have stepped up and been amazing beyond words. I am no clue what this journey has been like from them. I know we have worked through much of it with a sense of humor but I can only imagine this has not been an easy road for them. They have been super helpers to us with the dogs and house sitting, cooking for me when I could not cook for myself, keeping me company and offering occasional hugs. I am a very lucky person to have these two amazing young people in my life. I hope I have supported them well through this and moving forward.
I am looking forward to showering without a bag or randomly pooping through my ostomy if I showered without my bag. I am not going to miss my port, aka my third nipple, that protruded from my pectoral area. I am not going to miss having to remember to take my emergency bags with me everywhere. I am not going to miss wearing yoga pants everyday.
I am excited to eat all the vegetables I want, raw or cooked. I am excited to just take a shower without having to tend to other things. I am looking forward to hiking. I am looking forward to traveling. I am looking forward to having the head space to plan benign things like the Ypsi egg hunt, womans rec softball, power parties, gardening, and not worrying where any event lands in my chemo cycle. It is all great and overwhelming at the same time.
In this moment I cannot seem to find my footing. I feel like I am floating in space while still going through the day-to-day. I am telling myself to lean into the uncertainty and know in this exact moment I am ok, my loved ones are ok, and this exact moment is a good moment to enjoy. Things will settle where they will and the next steps will become apparent when the time is right. For now – heal. Heal in my body, heal in my mind and heal in my sense of self. I am ok. In this exact moment I am ok.