colon cancer – Page 2 – Fillingquiver

Tentative plan

For anyone who knows me, knows I love to have a good plan. A goal to work towards, something to prepare for and anticipate. For the moment, we have a line up of next appointments, procedures, scans and surgery date. We also know from previous experience that nothing is set in stone and one appointment is dependent on another and the results from the test before it.

Our current plan looks like this:

Kerry has a procedure on May 6 to look at the tumor site and tattoo it so that it can be seen easily on the outside of the colon wall when they go in to do surgery. Who knew you could tattoo a colon? I didn’t until this week and it doesn’t sound comfortable.

May 9 is his next CT scan. They will be scanning his chest, abdomen and pelvis. There was a spot on his lung they felt was benign on his initial scans but they want to be sure there haven’t been any changes. Our prayer is that this spot is gone or completely unchanged.

May 16 is the big surgery date. The surgeon is planning to remove the remaining part of the tumor, area around it and the surrounding lymph nodes. We are hoping this can be accomplished laproscopically because it will be an easier recovery for Kerry. The surgeon has told us that the lower in the colon/rectum the tumor, the harder it is to accomplish the surgery laproscopically. Kerry’s tumor is low and the surgeon has said if he needs to open Kerry up to gain better access he will.

The surgery will last several hours and we are hopeful that the surgeon will be able to get clear margins without going into the circular muscles around it. If he has to go into those muscles, the likelihood of a permanent colostomy goes up. We are praying they can remove the tumor and get clear margins without the need for a permanent colostomy. Kerry will likely stay in the hospital for 4-5 days and then be off work for several weeks during recovery.

We did learn this week that Kerry will have a temporary ileostomy after surgery (HERE is some good information about what that is). He will have the ileostomy for the months he is on clean up chemo and for about a month after he is done. Assuming all goes well he would have reversal surgery (putting everything back) in November or December of this year. It was pretty discouraging to be honest. We had hoped that he wouldn’t need one. Because radiated tissue doesn’t heal as well and to minimize the chance of complications, it is best to give the remaining bowel rest while it heals. The ileostomy means that when Kerry goes back to work he will likely be on light duty for several months and perhaps until the reversal is complete.

We continue to rejoice in the blessings and goodness of God through this. I have been keeping a journal of the notes, acts of kindness and how God has supernaturally provided for our family thus far. We’ve rejoiced as God has provided answers to prayers and met needs we didn’t know we had. We continue to cling to Him in times of uncertainty, in times when our plans change and when we hear discouraging news. We pray that God will be glorified and that we can be faithful witnesses to His goodness.

Ways that you can specifically pray in the coming weeks:

Pray for the surgeon and healthcare team that will be taking care of Kerry during his surgery and hospital stay. Specifically that the surgeon will be able to get clear margins without the need for a permanent colostomy.
Pray for Kerry’s upcoming scans. That they will be clear.
Pray for our family as we prepare for Kerry’s surgery and time off. That we will be good stewards of our time between now and then. Our children have been amazingly resilient and we’ve been very open with them about cancer, surgery and what to expect. Pray though, that we can spend our time well with them. That we can show them God’s goodness and our reason for hope in Him.
Continue to pray that we will be sensitive for opportunities to share the gospel with those we encounter along the way. We have hope and peace in what lies ahead because of what Christ has done for us. We know others don’t always understand or have this same hope but that we have been given a unique opportunity…pray we use it well.

As always, thank you. Thank you for praying with us and for us. May God be glorified in all we think, say and do.

DONE! (ish)

Today was a good day. It was Kerry’s last radiation day and his chemo pump came off until after surgery. To say he’s a happy camper is an understatement. So we are done”ish” with chemo and for sure done with radiation.

The last three days of radiation have been “boost” days. Trust me…it’s not nearly as exciting as it sounds. Really it just means a more concentrated smaller beam. And it brings with it some additional side effects. We are hopeful that now radiation is over, those side effects will be on their way out the door soon. Overall, the doctor seems pleased with how Kerry tolerated radiation. We took the nurses and office staff who cared for him brownies this afternoon as a celebration.

For the next several weeks he will have labs on Mondays and we have a follow up scan on May 9. We meet with the surgeon next Tuesday as a planning appointment to hopefully set a surgery date. Kerry is looking forward to being able to work a whole day tomorrow…although I think the fatigue will catch up with him, but we’ll see.

We also celebrated Zeb’s 6th birthday today. He was super excited to wake up this morning and be 6. We heard a lot of “well I’m six so I can…” today. That kiddo has never lacked confidence and it shows.

Titus also got his braces off today, he was looking forward to gum until they told him no gum because of his holding wire on the bottom. 🙁 But popcorn and chips are a go, so I think he’ll live.

Thank you to everyone who has prayed Kerry through this first round of treatment and his radiation effects. We have appreciated them and saw God answer those prayers in His provision for daily strength and ability for Kerry to keep working. We saw those in his side effects not being worse. Most of all we saw Jesus in those who cared for us and met needs we didn’t know we had. Words can not express how very thankful we are for those who have ministered to us. Whether it be by praying for us, making meals for us or sending a note of encouragement. We are blessed and we have much to be thankful for.

Here are some pictures from today and a song that has been one we’ve included in our “playlist” at home. It’s one Kerry and I have listened to between appointments and in moments of uncertainty. We serve a great God. He is our Rock and our Salvation. In HIM our hope lies.

We started radiation with a selfie and we ended it with a selfie. 🙂

Week 5 — One to go

The countdown is on. Kerry has 3 more days of radiation this week and Friday his chemo pump is off until after surgery. To say we are anxious for Friday is an understatement. Kerry has been experiencing some increasing side effects from the radiation the last couple of weeks. He had some pretty severe intestinal cramping. The radiation oncologist gave him some anti-spasm medication that seems to help if he stays on top of it. Unfortunately, it makes him a little dizzy if he stands up too fast.

Kerry is still working 4 days a week. He doesn’t work Monday because of the time it takes to draw lab and put the pump on and then radiation in the afternoon. The rest of the week he’s at work by 0600 and works until 1pm, then comes home to get Gabe and they go together to radiation. Gabe is getting lots of good practice driving and Kerry gets a little nap. He needs to rest most days and has definitely been feeling lots of fatigue over this last week.

We had an appointment with the medical oncologist this week. He has scheduled a CT scan in May and then we will meet with the surgeon to decide when surgery will be.

We have some things to celebrate this week with Gideon. On Tuesday he graduated from speech therapy! This is a huge accomplishment for him. A year ago only about 10-15% of his speech was understood by strangers and he wasn’t putting words together well. He was diagnosed at that time with Apraxia of speech that is likely related to his Noonan Syndrome/Neurofibromatosis. His speech therapist was wonderful and he made massive strides in his ability to express himself. We are so thankful! We will go back for a re-evaluation in a year to make sure he is still on track. On Thursday he had his yearly cardiology appointment for his heart murmur (also related to Noonan syndrome). His heart murmur is completely gone (a HUGE answer to prayer) and we now only have to follow up every couple of years to monitor his heart size as he grows. We are so thankful for the answered prayers we’ve had this week.

One other big praise for us was that the plumbing in the basement is done. Just before Christmas our sewer backed up (YUCK!) and we had to tear out the bedrooms, bathrooms, storage room and part of the walls. While we had the flooring up, we decided to replace the cast iron pipe in the old part of the house…all buried under the concrete floor of course. Then Kerry got cancer and everything got put on hold for a time. This week we had someone jackhammer the concrete out (super noisy) and the plumber came out to replace the pipe. Now we need to get some sand and poor concrete to patch the floor. Then we’ll be ready to start putting sheet rock up and flooring down. We are thankful for progress!

Overall, it was a good week. We are thankful for God’s provision for our family and meeting needs before we even know we have them. Even on hard days we have much to be thankful for.

Psalm 73:28: But as for me, the nearness of God is my good; I have made the Lord God my refuse, That I may tell of all Your works.

Week 3 — Halfway

Halfway…boy it seems like we have a lot further to go than that some days, but today is halfway through this first run of chemo and radiation for Kerry. He has just finished 14 of 28 radiation treatments and week 3 of 6 on his chemo pump.

He is definitely starting to feel the effects of radiation this week. He’s wears out much more easily and takes a lot of naps. We are thankful he is still able to work5-6 hours a day before he goes to radiation. He’s had what was billed as “GI discomfort” in the list of side effects. I’ll let you fill in the blank about what all that entails, but it is certainly unpleasant. The chemo makes him nauseous and ruins his appetite.

So, I feed him what he will eat and ask him every day if anything sounds good for supper. He has been able to stomach pizza and ice cream lately so I’ve let Papa John cook more than I usually would and I keep the freezer stocked. I’ve said before this chemo is like morning sickness. All the yuck feelings and cravings for absolute junk. On the weekends when the chemo effects wane a bit, I try to shove in as many fruits and veggies as I can.

For now…we are thankful he’s made it halfway. Specific ways you can pray this week:

Continue to pray for limited side effects. Right now he is controlling them with over the counter meds. We are hopeful it won’t get much worse.
Moments of rest. He is able to nap and sleep well at night. We are thankful for that.
Kerry’s white blood cell count was a little low this last week. While the chemo he takes isn’t supposed to wipe out his immune system, it can lower his ability to fight infection. With 8 kids our home is a germ factory. So pray that he stays well.
Pray too for some friends of ours in Pueblo. They lost their sweet baby, August, through miscarriage earlier this month. We know the hurt and sadness they are feeling. Pray for her as she recovers physically and pray for their hearts as they grieve. They have been heavy on my mind.

I want to share a song that has been on my playlist this week. It’s a powerful reminder that God has a purpose for it all.

Awareness

I never thought I’d be advocating for “Awareness” for a disease. But here were are. It’s March. It’s colorectal cancer awareness month.

Kerry doesn’t fit the demographic for someone with colorectal cancer. We’ve been told more than once “You’re not the kind of guy we usually see coming in for treatment like this.” He has no family history of cancer…of any kind…at all. He doesn’t smoke, doesn’t drink, is relatively active and overall healthy. So what gives? Honestly, we don’t spend a lot of time wondering why . We know that all things work out according to God’s perfect will so we take this as an opportunity. One that isn’t granted to everyone and one we pray we are faithful in.

Kerry never would have been diagnosed had he ignored the vague GI symptoms. He would have never been diagnosed if I wasn’t the naggy nurse I am. He would have never been diagnosed if his physician hadn’t listened to him. Huge shout out to Dr. Holdeman here. I can’t tell you how thankful I am that his doc didn’t just pass it off as something else without fully investigating. More than 65% of the people diagnosed under the age of 50 have to see more than one doctor before they’re taken seriously and screened. He never would have been diagnosed if fear or embarrassment of bowel prep and having a colonoscopy would have kept him from being screened.

I’ve learned a lot over the last couple of months about colorectal cancer. It’s the third most diagnosed cancer in the US and the second most deadly cancer in men and women combined. Survival rates are good when caught and treated early. 10% of the new onset cases are going to be in patients under the age of 50. That’s about 9,500 people each year.

So here I am jumping on the awareness band wagon. Don’t be ignore your symptoms, don’t be afraid to talk to your doctor and be screened. Don’t assume you’re too young. And if you’re part of the over 50 crowd where screening is recommended…please do it. I can promise the bowel prep is way easier than treatment.

Week 2

Kerry just finished week 2 of chemo and radiation. Overall, it was a good week. The chemo really seems to affect his appetite and taste of food. Our biggest battle this week was finding something that sounded good to eat and getting him to eat it before it started sounding not so good. It’s tough to fight off nausea and keep food in your stomach when you don’t really want to eat anything at all.

We did find a couple of winners in the food category. Pizza always seems to sound good. Banana peppers…we also learned our boys also enjoy these. We’ve gone through more than a couple jars this week already! I made a vegan cauliflower/broccoli soup this last week that he was able to eat for more than one meal.

When Kerry was initially diagnosed we went to a mostly plant based diet without processed carbs or sugars. With his lack of appetite, there have been some days he’s just eaten whatever he could tolerate…plant based or not.

Radiation has gone well. Fatigue has been the biggest side effect there. The radiation oncologist said week 3 tends to be the week that things catch up with you. So we’re going into next week with a little trepidation, but also with the prayer that Kerry will continue to be minimally effected by the treatment and that he will continue to be able to work.

So prayer requests for this week:

That Kerry’s appetite would return.
Rest when he needs it and the wisdom to know when it’s time to take a break. Sometimes he pushes himself and then just drops at the end of the day.
Minimal side effects as we go through week 3 radiation.
Strength and stamina for the weeks ahead.

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.