“Oh! He looks so good!” It’s one of the first things people say when they see Kerry. Mostly because the mind immediately expects someone on chemo to be bald, emaciated and wasting away. So far…we’re not there yet. He does look good, especially on his off weeks.
But what you don’t see is how utterly exhausted this chemo makes him. On infusion weeks, day 3 and 4 are the hardest after chemo. He’s so tired and he sleeps a lot.
What you don’t see is the complete lack of appetite, ruined taste buds and 15 pounds he’s lost in the last couple of months. He salts his food like he’s making it snow. Seriously…it looks terrible, but he says he can barely taste it. (He’s low on sodium anyway because of the ileostomy, so the extra is really ok). It’s difficult to find foods that sound good to him…it’s like morning sickness except worse. The week of infusion he gets 2 nausea meds and then takes others around the clock for 3-4 days to keep the edge off.
You don’t see the stress of planning stoma changes, emptying the ileostomy bag or life revolving around scans, appointments and what ifs. Having an ostomy takes it’s toll emotionally and physically. It’s easy to become weary and discouraged. It’s easy to be anxious about the next round of weekly lab results, scans every 3 months or oncology appointment.
Do you know what else you don’t see?
You don’t see the incredible ways we’ve been blessed. We have so much to be thankful for! You don’t see the little moments of encouragement we’ve had. I can’t tell you how many times when I’ve been anxious or down about our journey, I’ll get a random text or message from a friend letting me know they’re praying for us. Or someone will post a picture in their Pray Kerry Kicks Cancer shirt and I’m reminded that we are cared for.
You don’t see the ways God has provided for us. We’ve been so loved on by others. It’s been a balm to us in difficult times. I’ve been keeping a box with cards and notes, but also writing down stories of how God provided for us financially, emotionally and spiritually. One of my favorites, is from early on when Kerry was in radiation still. It was a Saturday and we’d just got a big radiation bill the day before. We were trying to figure out how to arrange our budget to be able to pay it. The FedEx man was here and I was on the sidewalk trying to keep the dogs from jumping in his truck and a young gal drove up on our driveway. She got out of the car and said “You don’t know me, and that’s okay, but I have something for you. We’re praying for you. ” She gave me an envelope and got back in her car and drove off. I thought it must be a neighbor with our mail or something. I didn’t recognize the woman at all. When I got inside and opened the envelope, it was a gift that allowed us to pay our radiation bill we’d received the day before plus some. It brought tears to my eyes and I was incredibly humbled by the generosity of others. We still aren’t sure who she was or where the gift came from, but we are ever grateful for the blessing and provision of God.
You don’t see the nights we’ve sat around our table exhausted from the day’s appointments and treatment to enjoy a meal that someone else provided. We’ve thanked God over and over again for the generosity and the hands that lovingly fed our family along the way.
There are lots of things you can’t see on this journey. It’s easy to dwell on the negatives and worries. One thing we’ve learned is that looking at all we have to be grateful for, helps bring what really matters into focus. We are often reminded of God’s goodness even in difficult times. We are reminded of His merciful love for us and the assurance that we are not alone on this walk. Thank you to those who have prayed for us, encouraged us and cared for us in ways others can’t always see, but we’ve felt deeply. The Lord has blessed us through you.
Erin,
The journey seems long for Kerry and for you as the caregiver. What I can tell you is that all the feeling’s you have are so normal. I remember how my ostomy would squeak at the most inopportune time especially in front of patient’s. Plus I would literally have a flood of “poop” unexpectedly. Your faith will sustain you. Take time for yourself. As a friend told us. Pace yourself. This is the Long haul. I, too found out overwhelming how people took care of us, but I learned that it made rude road easier. Please PM if you want.