Our friend NED

Today we had a follow up with Dr. Mattar. It was to get the results from Kerry’s last CT scan, lab results and determine what the next steps are. As usual, the office was very busy and we had a while to wait.

Dr. Mattar reviewed the CT scan results. His CT scan was clear except for the lung spot we’ve been watching all along. There has been no change since the very beginning and it appears to be a benign granuloma at this point. This is excellent news!

Labs looked okay. His white count is a little low, but chemo was last week so that’s to be expected. Kerry will have labs again next week and then if all is stable, they will be drawn every 3 months along with another CT scan.

Then came the best words “You have No Evidence of Disease”. Woot! In the cancer world that’s called NED. We’ve been told they don’t use the word remission or cancer free as often as they used to, but rather tell patients you have no evidence of disease. We’ll take it however you say it. Whew! Big exhale after what feels like a lot of breath holding for the last months and weeks.

The very next question from Kerry was “when do I get to see the surgeon for my ostomy reversal?” I can’t say that I blame him. Dr. Mattar said 5-6 weeks post chemo is usually when he would be able to have surgery. Kerry told him he’d like to have it done before Thanksgiving. Dr. Mattar texted his surgeon while he was still in the room and said “He needs no further chemo and should be stable to have surgery before Thanksgiving”. Honestly, I’m surprised Kerry didn’t call the surgeon from the waiting room. We’ll give it a week or so.

While we are elated, we are also a little sad. Sad for our friends we made in chemo that aren’t done yet. Who are still going and sitting in those grey chairs each week getting infused. We are sad for our friends who will never get to NED and those who have and will die in the fight. We also know that we’re not out of the woods yet. We know that it can come back and that we will never leave the “in between” scans/labs/appointments. We are grateful for a God that provides for us in those in betweens. We are thankful for the friends we’ve made and the nurses who cared for us during treatment.

We are thrilled at the prospect of putting it all behind us, while keeping the One who guided, provided and sustained in front of us all the time. We have been given a unique opportunity and pray that we can be faithful while we rejoice and wait for the next step. We have learned much and are grateful that God has used this experience to continue to shape us and our family to be more Christlike.

Thank you to those who have prayed for us and our children. Who have encouraged us with cards, prayers, notes, texts and hugs. We thank you for continuing to pray that Kerry’s scans and labs remain clear. We also pray that he will be able to have his ostomy reversal before Thanksgiving and that it will be uncomplicated.

We are blessed in the midst of trial, in the celebration of the news today and in whatever lies ahead. We are blessed because we serve a Holy God and our hope lies not in treatment, but in Him.

Psalm 33: 20-22

Our soul waits for the LORD; He is our help and our shield. For our heart is glad in Him, because we trust in His holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you.

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. ūüôĀ 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. ūüôā
Chemo pump off!

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.

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.

Asking Questions

When I was studying for my Master’s degree, we spent whole courses exploring how people learn and why we teach the way we do. We took quizzes about kinesthetic, auditory, and visual learners. We talked about how we often teach the way we best learn. So when it came time to teach my own children at home I started thinking about the ways they would best grasp concepts within difficult subjects. And while I’ve employed some of these strategies and theories to learning…the best tool I’ve found to teach my children is to ASK QUESTIONS. Lots of them.
I started thinking about what I want my end result to be. Do I want them to just be able to regurgitate information for a test or a room full of people like a trick pony? And the answer is no. I don’t want them to be vats of useless knowledge…full to the brim of facts and statistics, theories and formulas with no ability to apply them. I want my children to think for themselves…to know where to go to find information, how to put that information together and draw a conclusion that is right and real for them.
When I teach my nursing students, it is so tempting to just want to open their brains and dump information in. I do lecture a fair amount, but I try to ask questions, to get them to take the next step to a conclusion on their own. I can’t tell you how many times potential employers would say “Just give me someone who can critically think…I can teach them to do any skill.” I think the same goes for my children.
I ask questions to teach them…to let them think things through. I want them to process the information, consider the options, weigh the results and determine why, when and how. It’s not enough for them to spit it back at me, I want them to be able to tell me why they picked what they did.
It doesn’t just go for school, but more importantly for their faith. I want my children to own their faith…not mine. I want them to follow Christ, to seek after Him and to do His will. I want them to know the Bible is true and that is sufficient for EVERYTHING. But I don’t want them to know it because I said so…I want them to know it because God said so and He called them to follow Him. I want them to find the path God has for them, not the one I want. I want them to wrestle with the tough questions, the challenges they face and I want them to ask questions and find the answer God has. More importantly, I want their faith to be tangible to them, not some paper thin replication of mine, but the kind of faith that is sturdy, the kind they’ve built with God themselves and I want them to be able to defend it to a world that will tell them they’re wrong.
I ask my children questions to teach them, to guide them, so that they can ask the questions and find the answers for themselves. By asking questions, I hope to allow my children to make what they are learning their own. I hope they will be able to know what they believe and be able to defend and articulate it. Because that’s the important part…not just the “correct” answer, but why.
 

What next?

This past Sunday we made the difficult announcement to our congregation that we would be leaving. Our hearts broke, but it has become apparent that we would be more beneficial to the Kingdom if we serve in a different place than our current church. Our church has been such an easy congregation to love. They have loved us too and we’ve cared so deeply for them. Our hearts are heavy at the thought of leaving. I can’t tell you how many tears we’ve shed over this decision. How many sleepless nights and how many prayers cried out to God. While it isn’t what we’d hoped for when we came here, He has clearly given His answer. And we are to go.
The question is now “What next?” And the truth is we don’t know. We don’t know where we’re going or what God has in store for us. But we know that it’s time for us to leave. I’m reminded as we’re in this time of transition of Psalm 119:105 that says “Your word is a¬†lamp to my feet,¬†And a light to my path.”
Several years ago we were camping with a group of friends from church. The ladies decided to make a trip to the bathroom in the dark, using the lantern to light our way. As we were walking along the single file path to the bathroom, we commented about how with the lantern we can only see the next step in front of us. We can’t see the whole path laid out before us, but only the one step ahead. We took one step at a time, trusting the path would carry us closer to the bathrooms.

It’s like that with God some times (much of the time really). He rarely, shows us the whole big picture. He may place a call on our lives, give us an idea of where we’re going to end, but He doesn’t often show us the whole process of getting there (lest we think we know a better way and try to go our way instead of His and jack up the whole process). Instead, God tells us “this is where I’ve called you…take one step.” He shows us one step at a time and we are to walk in faith and know that His word will light the way.
As much as I’d like to see the whole path, heck right now I’d like to see the end point (or at least the general direction), God has only shown us the next step. His word is a lamp to my feet and a light to my path. If we continually turn to Him and His word, He will light the way, giving us direction and guiding us to the place He has for us. God’s word is true, it is relevant and it is sufficient always and for everything. Even when we don’t know what comes next.

I am saddened to be leaving here. I don’t always understand and to be truthful I’m not always happy about it. But I TRUST that when we are faithful to Him…He is faithful to us. When we hold to the standard He’s called us, when we honor Him and when we are obedient to Him, He will direct our path.
So for now, we continue to serve Him, love His church and trust Him knowing that He has a perfect plan for our lives. We covet prayers for our family, the church and the leadership here. We are thankful for the time we’ve spent here. We have loved and cared for His flock here. We are sad that we have to leave, but we know God is faithful. And so we take the next step…

Proverbs 3:5-6

5 Trust in the Lord with all your heart
And do not lean on your own understanding.
6 In all your ways acknowledge Him
And He will make your paths straight.