chemo – Fillingquiver

If I Ever Get Cancer

I’ve decided that imagining what you’ll do when/if you or a loved one gets cancer is a lot like imagining what you’ll be like as a parent before you have kids. You’re pretty sure you have it all figured out until it happens and then you realize you know nothing.

That’s how this has been for us. Before Kerry was diagnosed we would sometimes talk about “If I ever get cancer…” and about how we’d approach treatment and appointments. We thought we had it figured out. We were sure neither of us would ever have chemo or radiation. We reasoned, if cancer is caused by cells that are overgrowing and not able to be regulated by the immune system, then you “beef up” the immune system and it will be able to conquer the cancer right? Build up the troops so to speak and the troops will win the war.

We read books, watched documentaries and research lots before we decided to go with traditional treatment along with some complementary treatments. So what is it that made us decide to ‘poison’ his body with chemo and radiation? Honestly…it’s what we felt the most peace with. We prayed a lot for wisdom and discernment.

When we researched and talked to other care providers, we couldn’t find a single one who was willing to operate and take the tumor out without chemo and radiation first. Not one. We found ones that would support us through chemo and radiation with complementary therapies. We found ones who told us alternative treatments were junk and it was asking for a death sentence and we found ones that were more middle ground.

I’m a pretty crunchy person and I am a nurse. I’ve had most of my babies at home. I use a lot of complementary and alternative methods for ailments. Yet….my kids also go to the doctor, get most of their vaccines and vitamin K at birth I just heard my crunchy friends gasp.

I know there is merit to both approaches to health. I believe it’s vital to fuel your body with nutrients, vitamins and non-crap food. I also know that there is value in western medicine, antibiotics and traditional approaches to care.

We made the choice that we could live with and that felt the best at the time. We have re-evaluated at each step if this was still the path we wanted to be on.

We asked LOTS of questions of our oncologists. In fact, the medical oncologist we see jokes with us about our ‘question notebook’ and Kerry’s cancer folder that contains all of his meds, appointments, procedures and lab values. Complete with color coded, labeled tabs…all chronologically in order of course. We’ve been up front with Kerry’s doctors about our desire to incorporate complementary therapies in with his chemo and radiation. And our oncologist is okay with that. He’s been blunt with us about not throwing out the baby with the bathwater and encourages us to still use the traditional approach. He has shared studies and is willing to look at the ones we’ve brought to the table.

So earlier this year, every week Kerry would go to get his chemo pump and every day he went to radiation. I fed him fruits and veggies and vitamins to ‘beef up the troops’.

Tomorrow, he goes again for chemo. We will again incorporate the complementary therapies we’ve carefully researched. I’ll try to give him as much healthy fuel and supplements he can handle. Ultimately, we put all of our trust, not in the supplements and therapy, but in God. We pray for His will to be accomplished in it all.

Together we pray for God’s healing hand in it all. We trust that regardless of the outcome or therapy we choose, God will be glorified in the life we live. He is our healer, our protector and the reason we have any hope at all.

Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Blood clots, back to work and Chemo round #2

It’s been a busy few weeks. At Kerry’s 10 day post op appointment with the surgeon he casually mentioned some lower leg pain he’d been having. The blood vessel in his left lower leg was a bit swollen, sore and hard to the touch. His surgeon felt like it was probably just an inflamed blood vessel, but ordered a ultrasound of his leg just as a precaution. The ultrasound revealed a blood clot behind Kerry’s RIGHT knee and inflammation and irritation in his lower left leg. We promptly got a prescription for a fancy new (and very expensive) anticoagulant drug called Xarelto.

We saw his primary doc the next day. I’m just going to say…we are so thankful for Dr. Holdeman. He was the one who listened to Kerry’s complaints early on and ordered the colonoscopy even thought Kerry didn’t “fit the profile”. His proactive approach allowed an early diagnosis for us. Dr. Holdeman had already talked to our surgeon and oncologist (who was on vacation in the Middle East) by the time we had our appointment. Kerry will continue on the Xarelto for at least the next 6 months. Having cancer and treatment can increase your risk for DVT (deep vein thrombosis) and Kerry has had a DVT previously when he fractured his knee. The anticoagulant adds a layer of complication further down the road when it’s time for his reconnect surgery, but that’s a bridge we’ll cross when we get there.

The cool thing about Xarelto is that there are no lab values to be checked. When he had his DVT previously, he was getting injections in his abdomen twice a day and then having daily lab draws while we got to therapeutic levels. This time it is as easy as taking a pill twice a day and living life. We’re thankful it’s one less thing to track and so far it seems to be working well without major side effects.

Another milestone for Kerry this week was going back to work. He started back partial days on Monday and has been gradually increasing his time each day. He’s still on weight restriction for the next several weeks but he said it’s felt good to be back, even on light duty.

Next week clean up chemo starts. We’ve debated a lot about whether he should even do it or if we should delay the chemo until after they reconnect his ostomy. The thought of a chemo pump and the ileostomy can be a bit daunting and wearing on you. And quite frankly…Kerry is more than ready to be done with the ostomy. It inhibits his movement and ability to do his job and just life in general. We have yet to find the right products, “method” of taping or whatever to help make him feel like he can do normal activities. So adding chemo on top of that is not something he’s super thrilled about. However, we’ve talked a lot with our doctors and have been doing research on our own. For now, the plan is clean up chemo first and then the ileosotmy take down after that. We are hoping by Thanksgiving to have everything reconnected.

Even in light of the ostomy and the blood clots we have so much to be thankful for. God has been gracious to us. He is using this time to refine us and bring about change within our lives to shape us to be more like Christ. We are learning lessons of humbleness, kindness, patience, tolerance, compassion and so many more.

Some ways you can pray for us as we prepare for the next steps:

Pray that we can be a light to others in the face of adversity and uncertainty. We have been given a rare opportunity, pray that we use it wisely.
Pray for Kerry as he learns to live life with his ostomy. It’s a challenge.
Pray for minimal side effects from the chemo. This next round has the reputation for being particularly brutal. Pray that God would protect his fingers and toes from neuropathy and the rest of his body from cold sensitivity.
Pray for our children. It’s stressful for them too. Pray that they will see God’s faithfulness in trial. Pray that we will guide them and disciple them to see Jesus. Pray for those that don’t yet know Christ as their Savior. That they would come to a saving faith.
Pray for our docs, nurses and other care providers. We are thankful for them. Pray that they will have times of rest, for wisdom and grace with their patients. Pray also for their families. We know there is much sacrifice when they are caring for others.

Thank you all for the prayers. Our family has been so blessed by each note, text or word of encouragement.

Psalm 86:12 I will give thanks to You, O Lord my God, with all my heart,
And will glorify Your name forever.

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. 🙂

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.