Homebound

They say it is always darkest before the dawn. I’m banking on this to be true. Today is July 10. This is the first day in 40 days that I feel that a return to normal life is possible. I may be jumping the gun here, as I haven’t written about the lower anterior rectal resection surgery I had in April, or my life with an ileostomy for eight weeks. I have been consumed with the recovery from the ileostomy takedown surgery that took place on May 31.

In the last 40 days, I attempted to write on three different occasions. I never got very far. Each attempt was provoked by the idea that “today might be the day I turn a corner,” but a few sentences in and I realized that not much had changed from the day before and I would return to the steady sanctuary of my bed. As I reflect on those three entries, I hear my struggle for relief.

June 4 - Five days ago, I had the ileostomy takedown surgery that put my cute little intestine back inside me and jumpstarted the normal flow of my digestive system. I knew I would have urgency and frequency in these first few days to weeks but wow, is this exhausting. And uncomfortable. And mildly humiliating. I have been wearing women’s adult diapers for five days since accidents are inevitable, but less frequent as the days wear on.

June 9 - I haven’t written in a while- even now I feel tired and not sure what to say. Hashing through previous parts of my treatment is not in the cards today. Working through my own thoughts and feelings feels ambitious. Tired of feeling tired. Want to get back to my life and energy- feeling a bit of envy for other peoples lives.

June 19- I’m having a hard time looking at myself in the mirror. Pale skin, sharp bony angles, and my big hazel eyes are tired. This last week I wanted to be someone else. And I was angrily jealous of everyone else in the world, living their happy, summertime lives. I lay in my bed for days, almost a week. Barely able to eat, thirstier than Ive ever been. And unable to control anything about my life because I am unable to control my bowels. The short 15 feet from my bed to the toilet felt like a chasm I had to cross every fifteen to twenty minutes. I could not sleep. Every accident ripped a part of my dignity from me and every passing day melted my dreams for all that I would do now that I was cancer free. This is a devastating low that I have not experienced before. And yes, all I wanted to do was sit in the woe is me. No one called. No one seemed to care. I had been fine before, why would now be any different. I’m still tired, still empty, still ambivalent, still numb, lacking my positivity, lacking my ambition. I feel scooped out. Hollow. What a hypocrite I’ve been about my positive cancer experience, put a fork in my eye. What should I do to get it back?

I was supposed to go back to work a week ago. Given the fact that I still needed to take copious amounts of Imodium and fairly immediate access to a restroom, there is no way that was happening.

I was supposed to have spent the last three days of June with my sister, brother in law and five year old niece who flew in from California. There was no way that could happen either. And so they came to the city, did their own thing, and left. And I missed out on it.

Which has been the story of the last 40 days. I missed out on an entire month of summer. I barely ate. I officially despise chicken breast and rice. I have no idea how much I weigh, but I have never been this skinny before in my life. I have no energy, my body hurts, it is stiff and sore from lack of activity. My tailbone and my glutes ache from all of the trips to the bathroom. I have never felt so alone, sad, depressed, hopeless and worthless in all of my life.

But all of this has started to change since a trip to the doctor last week. A new regimen of Lomotil, Imodium and fiber has slowed things way down and my days have been spent doing other things that watching TV, sleeping, and using the restroom. My meals consist of fruits and vegetables. I remain cautiously optimistic about exercise, leaving the house, returning to work, and reclaiming the remainder of my summer. Dawn may just be breaking.

Nutrition Note

My colorectal surgeon recommended that I increase my fiber intake when I was about six weeks post reversal surgery. He noted that I could take any kind of over the counter fiber. I was disappointed to see that many widely availble fiber supplements,, gummies, wafers and cookies have lots of added sugar, food dyes, and questionable preservatives. These are all things that, in my post cancer life, I want to avoid as much as possible. The below recipe is for Crunchy Ginger Fiber Cookies and was my own version of a recipe I took from Life & Lemons. I ate two cookies every morning and they were very helpful in supporting my return to a healthier, normalized digestive tract.

Ingredients

Dry ingredients

• ¾ cup oats

• ¾ cup buckwheat

• ¼ cup maple sugar

• 2 tbsp psyllium husk

• 1 tsp ground ginger

• 1 tsp baking powder

• Pinch of salt

Wet ingredients

• 1 inch piece fresh ginger, grated

• ¼ cup mild-tasting olive oil or sunflower oil

• ¼ cup maple syrup

• ¼ cup milk

  
  

Preparation

• Start by pre-heating the oven to 350 degrees Fahrenheit. Line baking tray with parchment paper

• In a small blender or food processor, grind the oats and buckwheat into a flour and add to a bowl. Add the remainder of the dry ingredients and mix well (do not skip this step – you want the psyllium husk to be evenly spread so that the gluten-free flour has a binding agent)

• Add the wet ingredients and mix through well. The dough should be a bit “tought” for a second and then come together smoothly. It will still be on the stickier side though.

• Use about 1 tbsp of dough and with slightly wet hands form a ball and lay on the parchment paper. Gently flatten the cookie out. Repeat this process until the dough has gone. Put into the oven and bake for 27 minutes or until the dough is golden on top and the surface has started to slightly crack. Take out of the oven and let cool. Do not be surprised – the cookies may still be a bit soft when coming out of the oven but will crisp up when cooled. ENJOY!!