The in-between

I guess it’s been a while since I’ve updated about Kerry and our family. Mostly because we’re just trying to get through the weeks and counting down until his last infusion (one more to go!). We are living in the in-between. In-between surgeries, chemo, labs and scans. So here is our update of life in-between…

Our in-betweens are marked by chemo infusions and the week after. Kerry goes every other Wednesday for his chemo and wears a chemo pump for the two days after the initial 3 hour infusion.

As the infusions have gone on, Kerry has experienced the ‘cumulative’ effects of chemo. Basically, it means the side effects add up and get worse each infusion week. He struggles most with nausea, extreme fatigue, change in taste and cold sensitivity in the week or so after his infusions. The fatigue has been severe enough that he’s only been able to work half days for the few days after infusion and the days he is able to stay at work all day he comes home completely exhausted. We are grateful his work has been willing to work with him and has been understanding.

One of the challenges during these warm weeks has been trying to keep cool enough at work. Due to his cold sensitivity Kerry is unable to drink anything cooler than room temperature water for 5-7 days after infusion. When he does, it makes his throat feel like he’s swallowing rocks or closing up. We did try something new the last couple of times that seems to help. He drinks or eats a slush throughout the infusion (2-3 hours) and it seems to lessen the intensity and length of the cold sensitivity.

After the last few infusions he has developed some neuropathy in his fingers. They tell us that the neuropathy may continue to worsen in the months following chemo, but for now, the effects don’t last beyond several days after chemo. He’s taking several supplements and doing exercises to help with neuroprotection and hopefully limit any long-term damage. We’ve been told that anything that lasts longer than 72 hours after chemo is considered permanent.

On our ‘in-between’ weeks when he is feeling well, we have tried to enjoy the little moments and time we have together as a family. We celebrated Lily’s first birthday in August and were able to enjoy a quick trip to Colorado over Labor day weekend. It was an off week for him so we took advantage of the long weekend and saw some dear friends and church family in Pueblo on the way to visit my grandparents in the mountains of Westcliffe. A week ago, we both took a day off and we took our family to the state fair. We went mostly for the food. 🙂

We’ve learned to plan projects and family events for in-between weeks too. It’s made things a little tougher because we have half as much time to get things done as we used to. We’ve seen the older boys really step up to help to make sure things get done or at least maintained on the weeks Kerry is down with chemo. Gabe has been working part time and taking college classes part time. Otto and Zeke have both really worked hard at home to help out and I am so thankful for them. The younger boys have had to make adjustments and thankfully they’ve been flexible with whatever has been thrown at them.

We’ve learned a lot over the past several months of treatments. We’ve met some wonderful people in chemo, patients and nurses. I told Kerry we should write a book “The people you meet in chemo” and tell the stories of the people and the families we see every week. If we had more time maybe… We’ve learned the importance of using every moment for purpose. Even our down time and rests take on a new meaning and priority. God has used our in-between to make us grateful for the health and time we’ve been given. He’s given new urgency to the relationships we have within our family and with others.

We are grateful that Kerry has completed 7 of 8 treatments. Some ways you can pray for us in the coming weeks:

Kerry has a CT scan on Oct 1. Pray that all continues to be clear. His last chemo infusion is planned for Oct. 2. Pray that his side effects are manageable and that he has no lasting neuropathy…this is our biggest concern. We will meet with his oncologist again on Oct 10. We are hopeful that after this appointment he will be given the all clear to see the surgeon and start moving towards reconnect surgery in 4-6 weeks after the infusion. The ileostomy has been the biggest and worst adjustment for Kerry to make. He is ready to be done with the ostomy and we are hoping it can be reversed before Thanksgiving. He did have a blood clot shortly after his resection, so the fact that he’s on anticoagulants will complicate the reconnect surgery. Please pray the reconnect can happen before Thanksgiving and it will go smoothly.

Thank you for praying for us as we live in-between.