I have always thought storms were cool…to an extent. A good thunderstorm while you snuggle deeper into your warm covers is amazing. Waking up to a beautiful, snow covered ground is also another favorite. Massive floods rushing away homes, cars and lives. Scary. And no thank you. Wild fires that lick thousands of acres and consume neighborhood homes. Again, I’ll pass. Sometimes I take a big sigh of relief that Indiana is not home to many of the natural disasters one hears about on the news. Because while the disaster and storm itself is awful, it is the clean up and recovery that can carry the most weight. Lasting effects from the storms have forever altered people and places. Think of how many people moved after Hurricane Katrina instead of rebuilding. No judgement either way. But some believed a whole new area was better than remaining and rebuilding. 

My big mantra for my cancer journey was “into the storm.” But I had no idea I would finish this storm only to finally see the mountain hiding behind the dark clouds. I said it this past week and I will continue to say: post cancer treatment is much harder to navigate than actually treatment. Treatment has a plan, a bunch of people helping you to reach this goal. Remission has “guidelines” and “who knows” and “we’ll see” or “maybe a permanent side effect” and “that G.I. doctor doesn’t deal with fecal incontinence.” Umm, excuse me, what?? I was so naive to think the only storm was the cancer itself. My goal was to endure the treatments to get back to myself before cancer. But returning to old Liz is impossible. The surgery to remove my cancerous tumor also took 95% (or more) of my rectum. In case you don’t know the function of your rectum, it is the area after your large intestine only 5 or so inches long where your stool is stored right before you expel it. When you poop, your body will trigger you that it’s time to go to the bathroom because your rectum is full. I don’t have that storage place. When I need to poop, I NEED to poop. There is no storage, no gentle alert from my body that it’s time to go to the bathroom. Instead it is like a fire hose of poop and I am either clenching my bum as best I can or I am running (no really, RUNNING) to the bathroom and most of the time it’s both. And this is when the vague time domain of two years to equilibrium makes me frustrated. What can I do to help now? What can I do to continue to plan evening events like concerts with friends or dinners out without the constant anxiety of how my butt is going to respond? Will I need to be close to a bathroom? Where are the bathrooms located? Should I pack an extra diaper? I only needed to change my diaper once today, we’ll call that a pretty good day said no adult ever. And it’s frustrating because I don’t know what else to do to help my butt respond better: working on stress management, trying to get enough sleep, being mindful of what I eat, eating enough fiber, working to lower my gut inflammation. It does not seem like anything is improving. Because sometimes it is not the firehose of diarrhea but rather a sneaky I-didn’t-feel-myself-poop-kind of frustration. And I spiral. How am I supposed to get back to a full-time job if I cannot control my bowel movements. Most jobs require being potty-trained. What am I contributing to my family? Did I miss my opportunity to have purpose? Like I said, spiral. If I cannot manage my butt with food, what if I didn’t eat as much? The thought has occurred (more than once) to me if I didn’t eat, I wouldn’t have as much trouble with my derrière. Yet, I know that is not good for me. But it sure sounds better than continuing to try to manage my inconsistency in the bathroom. Mental battle. And you may be thinking, what do your doctors say? Well, currently, I am only scheduled to see 1 out of my 3 team of doctors. The other two doctors, I see nurse practitioners. My PT has tried to get some G.I. help. Apparently I’m a super special case. Is my bum issues from radiation? Surgery? I. Don’t. Know. I will reach out to my radiation oncologist and see if she has suggestions but sometimes, I still just break. I have zero answers and I’m not even sure what to do to continue to move forward and it’s overwhelming and lonely. So I cry. I breakdown in my PT office and cry my eyeballs out, eyes red, nose like Rudolph the reindeer. This shit is still hard (no pun intended.) In my tears, my PT reveals one of her own life burdens. And I ask myself, why aren’t people more vulnerable with each other? I may not be fully potty-trained but I am not the only one with pain or struggles. So back to my gratitude list. Consistently. 3 things each day. 1. I am so thankful for adult diapers. 2. I am grateful for my PT who made a promise to help me navigate the rest of my cancer experience. 3. I’m thankful for this blog. To write and express and share my journey. It is therapeutic for me just as much as it is eye-opening to you, I hope.

Liz