faith – Fillingquiver

What you don’t see…

“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.

Week 1 Done

Kerry started his routine of chemo and radiation this week. Monday morning he had lab drawn and then we went to the infusion center. There he received steroids and anti-nausea meds before they started his chemo pump. He will be receiving the drug 5-FU. He then goes to radiation every afternoon at 2:30 in Wichita. His radiation takes around 15 minutes and then he’s on the way home.

This is the pump Kerry is connected to Monday-Friday. It delivers small amounts of medication over the course of the week.

So…how’d he do? Overall, ok. For the first time in his life he struggled with having an appetite. If he didn’t have food in his stomach he got nauseous but he didn’t want to eat anything. I told him “Sounds like morning sickness”. 🙂 The rest of the week we called it chemo morning sickness. After radiation he was mostly tired, but he was able to work every day this week from 6am to 1pm, then home and then to radiation at 2:30. They tell us the side effects of radiation really start to kick in around week 3 so we enjoy the good weeks while we can.

The biggest adjustment this week was being tethered to the pump. It’s amazing how short that 5ft tubing feels when you have to roll over in bed or shower with the pump hanging outside the curtain. Kerry does a lot of lifting and forklift/parts picker (please don’t ask me what that is) work at his job. Some of it requires him to wear a safety harness and lift above his head which was made more difficult this week. He said he wasn’t as fast as he usually is…and that was frustrating to him I think. We know that there may be a time in the coming weeks he won’t be able to work so for now, he is thankful he feels good enough to go.

He was looking forward to today though. This afternoon he got his pump off for the weekend. I think he was most excited about being able to hold the kids on his lap. When he is connected we have to be cognizant of the tubing, pump and port so snuggles have been limited this week. I wish I would have taken a picture with all the younger boys and Lily on his lap this evening. They were all happy (and crowded).

Today was also “Dress in Blue” day for colorectal cancer awareness month. I just have to say my work family and friends rocked it today! I loved seeing my Facebook feed full of pictures of you all wearing blue. I means so much to know that we have such a huge support system. We are ever grateful for the prayers and love we’ve been shown. If you missed it today, you can wear blue any time this month, post on social media with the #dressinblueday.

We are very blessed.

Next steps

This last week Kerry had his port a cath placed to be able to have easier lab draws and for the continuous chemo pump. He also had a head CT scan, PET scan and we met with the radiation oncologist and our regular oncologist again. It was a busy week and felt very long.

The port placement went well. He had an allergic reaction to the soap they used to clean his skin and broke out in hives. So we added that to his allergy list and gave benadryl until it cleared up. The port site seems to be healing well and he says it’s not near as sore as it had been. He went back to work on Wednesday without much trouble.

Kerry’s fancy port. It will allow for much easier access with labs, chemo and IV infusions. After multiple IV starts this week and lab draws, he’s thankful to have it.

Tuesday he had a PET scan and we met with the radiation oncologist. The worst part this week was waiting for the results from the head CT and PET scan. We didn’t get those until Thursday afternoon when we met with Dr. Mattar. The head CT was clear. The PET scan and chest CT from a few weeks ago showed a nodule in his left lung. Dr Mattar felt like it was likely benign, but they will be watching the spot closely and Kerry will have another CT scan in 3 months to monitor.

During his radiation oncology appointment we met with Dr. Rine. He spent lots of time with us answering questions and going over the recommended treatment plan. He was very straightfoward, honest and easy to talk to. They also marked Kerry for radiation and ran through the simulation of what radiation would look like. He got his first 3 tattoos (tiny freckle sized dots) on each hip and lower back to help align for treatment each week.

Thursday we met with Dr. Mattar, we were the last patients of the day. He joked with Kerry about our ‘notebook of questions’ and explained things very well. We have a treatment plan and will be starting that tomorrow (Monday). Dr. Mattar again went over risks and benefits as well as why this is the recommended course of treatment.

Kerry will work a half day Monday until 11. Then he will drive to Newton to have labs drawn and will get the chemo pump put on around noon. His first radiation treatment will be at 2:15 in Wichita. They say that the first couple of weeks aren’t bad, but week 3 the fatigue hits. Kerry is hoping to work as much as possible as long as he is able. Since he will do radiation every day during the week that means he will be working half days mostly. We are so very thankful that his job is willing to work with him and allow him to continue working.

Some specific ways you can pray for us and for Kerry:

First and foremost that we would glorify God in all things. Specifically that we would be sensitive to opportunities to share the gospel and the hope that we have in Christ with others. We have a unique opportunity in this, pray that we use it for His purpose.
That Kerry has minimal side effects during treatment. He is hoping to work throughout.
Pray for our children. That Kerry and I lead them well in times of stress and times of unknown outcomes. Pray that we remember and teach them that our hope does not lie in any medical treatment, diet or lifestyle change, but that our hope lies in Christ and Christ alone.
Healing. We ultimately pray for Kerry’s healing and that he will be granted many more years on earth without cancer. We trust that the Lord’s will will be done and even if He doesn’t heal Kerry…He is still good.

We thank you all for the prayers, meals, encouraging notes and acts of kindness you’ve shown to our family. We have been blessed beyond measure and we are thankful.

Waiting to meet with Dr. Rine (radiation oncologist).

A Lesson in Flexibility

So one of things I’ve learned as an adult (especially as a parent) is that it is important to stay flexible. Things, PLANS, change. I’m a planner by nature. I like to have a goal to work towards and accomplish. I like lists, I like crossing stuff off and I like feeling like I’m doing something other than spinning my wheels.

This week we met with the oncologist at the request of our surgeon. The PLAN was that Kerry would have surgery Monday and then we would consider a course of chemo after surgery if it was warranted. It really was supposed to be a meet and let’s talk about post-op appointment, but things change.

The MRI Kerry had last week showed that his tumor has grown through the muscle of his bowel up to the fat layer lining the outside of his bowel. This is not what we were expecting. It complicates the surgery. So no major bowel surgery on Monday.

Instead, our meet and greet with the oncologist turned into a meeting about chemo and radiation before surgery and a discussion about chemo after surgery for several months. We talked about getting a “port” (port a cath) to make venous access and chemo administration easier. There was discussion about radiation being used to help shrink the tumor to make surgery easier and the need to follow with chemo to kill any remaining or migrating cancer cells.

The treatment plan would look like this: Kerry would have a chemo infusion pump M-F with daily radiation treatments during the week. Both would be administered over the next 6 weeks, then surgery, then another 2-4 months of chemo. We are thankful Kerry’s work is willing to work with him since daily radiation in Wichita would significantly cut into his work day and having a port will limit his ability at work.

The oncologist would also like some additional scans. The type of cancer Kerry has metastasizes often to the brain and that’s the only part of his body he hasn’t had scanned yet. They would also like him to get a PET scan.

Needless to say it was overwhelming, disheartening and not at all what we wanted or planned on hearing. There are risks with chemo and radiation. There are risks not getting them too. It’s hard to know what to choose and what risks we’re willing to accept. We’ve looked in to some alternative treatments and some complementary treatments that could help with the side effects of chemo and radiation. I told our oncologist I want the best outcome with the least amount of collateral damage.

The oncologist was very kind and patient with us. He was willing to answer our questions and talk about options with us. He also made it clear that he felt strongly chemo and radiation were what Kerry should do. He said if it were him or his family, this is the course of treatment he would recommend for them.

We are praying for wisdom about what comes next. Our plan for this next week tentatively looks like a CT scan, blood work and port placement on Monday. PET scan and meet with the radiation doctor on Tuesday and chat with the oncologist on Thursday again.

Thank you to all who have reached out to us and who are praying. We are encouraged by those prayers and acts of kindness. We are thankful for the Lord’s daily provision of strength and love and the peace of knowing we are not walking this road alone. This cancer was not a surprise to God, though it was a surprise to us. We continue to pray for healing and wisdom in making decisions. We are ever grateful for His new mercies and grace.

Better than I deserve

“And when you ask me how I’m doing, I’m going to tell you that I’m better than I deserve. Because it’s true. I was a sinner destined for hell and God saw fit to save me. So anything and everything He gives me, including this, is already better than I deserve.”

Those were the words my husband used two weeks ago when he told our church family that he had been diagnosed with colorectal cancer.

The previous Thursday he’d had a colonoscopy because of some vague GI symptoms. We didn’t expect to find anything really, but rather checking off a box on the way to another diagnosis…but instead his doctor found a tumor. The biopsy showed the tumor was cancerous and that it hadn’t been completely removed.

The last two weeks have been a whirlwind of appointments, body scans, more appointments and more scans. And lots and lots of prayer.

We meet with an oncologist this week to help determine next steps. The tumor location and growth pattern makes just removing part of his bowel a little tricky. Surgery is tentatively scheduled for Monday February 18 depending what the oncologist recommends. We are hoping that radiation or chemo won’t be necessary, but we are aware that’s a possibility.

While there has been a roller coaster of emotions, thoughts and “what if” scenarios. We rest in God’s sovereignty and that He knows the future and will see us through. There are times that we have been scared about what lies ahead and what a cancer diagnosis means for our family and life as we know it. However, we are at peace knowing that God, in His infinite wisdom has allowed our family to walk through this trial together. We trust that this is being used to refine us and shape us to be more Christlike.

We know that God is good regardless of the outcome and we have been given better than we deserve.