January 2020 CT Results

On February 21, I will be starting a new round of chemotherapy.

The CEA marker in my blood has risen which aligns with what the doctors see in my CT scans: that the cancer has started to grow again inside my lungs and liver. It doesn’t look like they will be able to operate on my liver due to the way the cancer has spread out. To remove the cancer spots they would have to remove the entire liver. Likewise with my lungs, there are too many areas to remove surgically.

Apparently drugs are my best option at the moment.

I’m on the first of four standard treatments currently available for my type of cancer which, to me, translates to another few years of life. I will also be pursuing clinical trials. I’m not sure what that will entail but we shall see.

The plan is to give me another 3 months of chemotherapy and then see how I respond. At some point, when it is safe to take a long enough break from chemo, I will still have the procedure to have my ostomy reversed. 

I was a little disappointed with the results, to be honest. I was hoping for a completely clear scan. But God obviously has something else in mind.

I still feel fine. My abdomen is still a little tender from the surgery and is preventing me from doing sit-ups but that is about it. Since my last visit to the oncologist I’ve gained 22 lbs. I’m roughly at my pre-surgery, post-chemo weight.

I can’t say I enjoy living life with cancer, although I do enjoy living. If left untreated I could have been dead back in June of last year. I have no idea how anyone could live like this without God. My life may be coming to an end sooner than I would like. The only way I am coping is because I know God is in control, and ultimately, if the worst does happen, I’ll be with Him in heaven.

I’m rather curious to know how long God wants me to be down here and what He wants me to do while I am living out my last days, whether that be a few years or several decades from now. 

This news has not changed my outlook on life. I am not dead yet and will continue living as though I will make it to my nineties like my Great Aunt Irene, whom we fondly call “Auntie” and who turns one hundred this year. I’m continuing to keep busy with work, and while this may cause you to question my sanity, I have recently enrolled in a 6-month course to learn Biblical Hebrew. Not really sure why, except that I do enjoy challenges. Well, most challenges. I could do without my current “cancer challenge.”

I wasn’t exactly cheering as I left the doctor’s office today but after having countless doctor’s appointments my impression of doctors it that they really don’t know that much. Don’t get me wrong, they know WAY more than I do, but they don’t know everything. They are scientists predicting outcomes based on the available data. I still believe God can heal me because God can do anything. I just don’t know if it is His will to heal me.

Please pray for us:

  • Pray for healing. I’m not giving up hope of being healed until I meet God in person. It would be really nice if He would just tell me what He is planning. And on that note…
  • Pray that the chemotherapy will work. Pray that I can endure the side effects.
  • Pray that I will be eligible for cancer drug trials that are close to home.
  • Pray that Leanne and I can better know God’s will. 
  • Pray for our family. We don’t purposely remind the children of my condition, although they know. I can’t help putting myself in Harry’s 7-year-old shoes (figuratively speaking as his shoes would never last for 7 years and I of course could not literally fit in his shoes). How would I have felt at his age if my father had died or if there had been a distinct possibility he could die? I was blessed to have my father alive for 33 years of my life and my deepest desire is to be there for my children at least that long.

I’ll end this post with the lyrics from a song that I keep praying to God, that reflects my situation perfectly. I used to play this song a lot when leading worship back in my youth. (Am I old enough to refer to “my youth” yet? Oh yah, I have cancer. I can say whatever I want.)

I’ll let you know how my first chemotherapy goes.

Good to Me by Craig Musseau

I cry out
For Your hand of mercy to heal me.
I am weak,
I need Your love to free me.

O Lord, my rock,
My strength in weakness,
Come rescue me, O Lord.

You are my hope,
Your promise never fails me
And my desire
Is to follow You forever.

For You are good,
For You are good,
For You are good to me.

For You are good,
For You are good,
For You are good to me.

 

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2 Replies to “January 2020 CT Results”

  1. Thinking of you all, and praying. May God’s kindness and tender mercy be evident in all your lives whether He chooses to heal you or take you home.

  2. Hi John and Leanne
    You are constantly in our prayers! Of course we’re disappointed to hear that your progress has met a bump in the road. But more importantly we’re lifted by your courage and positive attitude.
    None of us know what lies ahead for us and in that sense we’re ALL in the same situation…. living from day to day by HIS Grace!

January Update

It’s almost time to mix up this drink again! John’s CT scan is happening Monday, January 27. He has a follow-up appointment with the oncologist booked for the following Tuesday, February 4. As you may recall, the doctors are hoping to find out how much cancer is left in his liver, and where, so they can decide what to do about it. After that, the colorectal surgeon will discuss reversing the stoma and reactivating his colon.

Many are asking how John is doing. He is keeping busy as usual with his software development/consulting work. The fact that he is able to work from home has been such a blessing, and it meant that he didn’t have to take much time off after the surgery. He is still slowly gaining back all the weight he lost in the hospital. He says it still hurts a little to cough but other than that he seems to have fully recovered from the surgery. Let’s put it this way: he got the all-clear to lift small children and shovel snow again. (Yay!) He’s getting used to having the ostomy bag, and all that entails (changing and emptying it as needed). At first it was a two-person job but now I don’t even notice when he gets up in the middle of the night to empty it. I guess he would say it’s a minor inconvenience. There are much worse things.

It was almost a year ago when I first sent my desperate prayer request to as many brothers and sisters in Christ as I possibly could and John created this blog to keep everyone updated. Thank you for sticking it out with us for this long!

In summary, John is alive and well right now and we praise God for that. Thank you for continuing to pray for us, as God continues to provide abundantly for all our needs. You can expect another update from us after we talk to the oncologist in February. Until then, may God our Father surround you with His grace and peace.

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One Reply to “January Update”

  1. So wonderful to hear , Leanne that John is doing so much better. . We continue to pray for his healing and for you as you support him.
    Thanks for the updates.

I’m Back

I’m back doing my own updates again. It was rather nice having Leanne write them for me. Actually, I found them especially interesting to read after the fact, as the way she outlined the experience differed a bit from the memories of my drug-altered state of mind.

Anyway, first I’ll update you on the next steps in my treatment, and then you can keep scrolling down to find a few snapshots from my visit to the hospital. WARNING: If you don’t like seeing incisions or little red gooey things (my stoma) you probably should avoid these photos.

First, thank you all for your prayers. This surgery was a little more intense than I imagined. There were a few times I wasn’t totally sure I was going to make it, but prayer helped me through. Tony’s gone and I am one step closer to possibly being rid of this cancer.

I met with the oncologist on Nov. 27. He didn’t say anything really new. I still need a CT scan to check the status of my liver. It will likely be in the new year once my body has healed from the surgery. He also made me see a dietician before I left the appointment since I had lost so much weight.

Two days later, on Nov. 29, I met with the surgeon. He looked at my incision and then made one of my drain holes bleed. He said that in 3 months he can put me back together again (ie. hook my upper intestines back up to my lower intestines). He will do a dye test first to make sure my rectum and colon are not leaking, which I think is an excellent idea. He also wants to see the results of my CT scan, so I will likely be meeting with the surgeon once the results of the CT scan are in.

I also finally got the results of my genetic testing. My genes are normal, meaning that officially, my colon cancer was probably not caused by my genes.

Please continue to pray for my recovery. It’s been over six weeks since my second surgery. They keep saying the healing process takes 6-8 weeks, so I’m almost there. It’s taking much longer than I expected to gain back all the weight I lost though. A few Christmas dinners should help with that. You can also start praying for the next hurdle, the cancer in my liver, to be overcome.

 

 

In the ICU

 

In my room in the surgical ward

 

Staples

 

Two of my four drains

 

No staples

 

My stoma
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One Reply to “I’m Back”

  1. I’ve been reading your posts. I have prayed for you and your family. I’m crying right now and thinking about how hard things have been for you all.
    It’s hard to know the right thing to say when big stuff happens, life and death stuff, human suffering…
    I’ve never met you, John Clark, but your story is an inspiration to me. I believe God is doing a miracle in your life…the doctors said you weren’t supposed to live. I feel kind of speechless and just amazed and I feel for the pain you’ve been through.
    Thank you for having the courage to share your story.

Life Without A Colon

It’s been three weeks since John’s ileostomy and we are adjusting to his new (hopefully temporary) lifestyle. As the stoma nurse put it, his colon has been put on holiday for awhile (she guessed about six months) until his rectum heals from the two surgeries. That means that for now, all his food is passing through his small intestine then exiting his body through an opening in his right side called a stoma. There is a sealed bag around his stoma that has to be emptied several times a day. He must add extra sodium and potassium to his diet and drink lots of water to make up for what is not being absorbed by his colon. For the time being, he also has to avoid certain foods that might increase the risk of a blockage which could land him back in the hospital.

He doesn’t have a lot of energy these days but he manages to make it up and down the stairs at least once (sometimes twice) a day and he is able to walk to the bathroom and kitchen table for most meals. He has even been able to sit at his desk for short periods of time, allowing him to catch up on some work. He has a post-op appointment with the surgeon next Friday, so hopefully by then he will be ready to be out and about.

He definitely lost weight in the hospital; he’s about 20 lbs. thinner than he was before the surgery. He has not lost his sense of humour though. This morning one of the kids did something that made him laugh so hard it made his incision hurt. He’s glad to be home, glad to be alive. He asked me to write this update just to let you all know that he’s doing ok and to thank you once again for your prayers and support!

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2 Replies to “Life Without A Colon”

  1. Leanne and John,
    I have been following along with your progress, and praying for you along the way. Just wanted to write a quick note of encouragement that as John continues to heal, there are many praying. Praising God for His faithfulness in these days following the surgery!

  2. Poopuri will be your best friend with a stoma! Just spray it wherever you empty the bag and it helps a lot. Also eating marshmallows before you change your bag helps slow things down a little so it’s not as messy! Good luck!

Home!

John is back! He came home from the hospital this afternoon.

His body still has lots of healing to do, but I’m glad he can do it in the comfort of our own home now.

Somehow we survived the past two weeks, but I couldn’t have done it alone. To all the people who brought us meals, babysat our kids, or visited John in the hospital, I want to say an extra special thank you! The words of Matthew 25:34-40 ring true: “I was sick and you visited Me [with help and ministering care]” (The Amplified Bible).

This blog has readers from far and wide who faithfully pray for us and send us encouraging messages. God often used your words to speak comfort and hope to me when I needed it the most. So thank you.

Our journey isn’t over yet, but tonight I am filled with gratitude as I look back at how far we have come.

“The Lord is good, a stronghold in the day of trouble; He knows those who take refuge in Him.” Nahum 1:7 ESV

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Day 11

Today was John’s eleventh day in hospital. Since the last time I wrote, he has been slowly recovering in the surgical ward. He is still working on strengthening his lungs with the spirometer. He still hasn’t been able to produce a real, strong cough yet, which is concerning. He also had a mild fever at one point last night. Because of these concerns, they are going to do another CT scan on him tomorrow (Sunday).

On the positive side, his ostomy started working so he was allowed to start eating again on Wednesday. After not being permitted to eat for a full week (since 11 am on October 29, to be exact) he is slowly regaining his strength. His hemoglobin levels have improved but are still on the low side. He feels quite exhausted but the pain is manageable. He’s no longer on intravenous drugs for that but is able to take oral painkillers as needed (which hasn’t been very often the past couple days).

Obviously, recovery will take some time. Unfortunately, no one can tell us exactly how long it will be until he can come home. Aside from the above-mentioned concerns, they also want him to regain a little more mobility before he goes home. He is able to get up and sit in a chair for his meals but hasn’t had the strength to go for a walk yet. The physiotherapist was hoping maybe by Monday he will have improved enough to attempt that.

John’s sister told me that her kids were asking when Uncle John will be able to come home. When she said we don’t know yet, one of them stated confidently, “God knows!”

I couldn’t have said it better myself.

“Are not five sparrows sold for two pennies? And not one of them is forgotten before God. Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows.” Luke 12:6-7 ESV

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Breathing

The past couple days have brought a few small changes. John has been working with the physiotherapists on sitting up in a chair again. It gets a little bit easier and he’s able to tolerate it a little bit longer everyday. Today they removed his nasogastric tube. Late this afternoon they moved him up to the surgical ward, so he is no longer in the ICU. That’s progress!

The only concern the doctor had was with his lungs. Due to the pain and tenderness from having two surgeries, he is having trouble taking deep breaths from the bottom of his lungs. It hurts too much. Breathing only from the top of his lungs puts him at risk for pneumonia so he really needs to get those lungs working at full capacity again.

The ICU doctor brought this fun little game for him to play (a spirometer). The goal for him is to keep the balls up by inhaling nice deep breaths.

Other than the breathing issue (please pray for that), the surgeon said he is doing fine when he checked his incision. John still isn’t allowed to eat or drink yet (ice chips are the highlight of his day) but maybe tomorrow he will be given the ok.

“The Lord gives His people strength. The Lord blesses them with peace.” Psalm 29:11 NLT

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One Reply to “Breathing”

  1. We continue to pray for John and all of you! It’s wonderful to see God encourage you and keep giving you peace and joy during this awful storm. What an intense surgery and recovery process! Thank you so much for the updates. Please Father God continue to encourage and comfort the entire Clark Family, and please fully heal John and protect him from pneumonia we all ask in Jesus’ name. Here is a Psalm God brought to my attention today:

    Psalm 121: “I lift up my eyes to the mountains— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you— the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.”

Stable after second surgery

This morning I found out that John was going under the knife again. His condition had not improved and they suspected there was some intestinal leakage. I know many of you were praying at church this morning while the operation was happening. What perfect timing! I am so grateful for the outpouring of support.

The surgery went as well as expected. There was definitely some leakage and old blood from previous bleeding that needed to be drained. The surgeon de-functioned his rectum and gave him an ostomy. There is the possibility that an abscess could form so they will need to watch out for that. He’s back in his room in ICU B. He now has a PCA pump that allows him to control his pain medication with the push of a button.

The remainder of the day he was able to catch up on some much needed sleep now that the pain was finally under control. In between naps, his mom, sister and I were able to talk to him a little bit. His responses and joke cracking were slightly sluggish from the painkillers though. He asked for ice chips a lot.

I have nothing else to report, but I guess that’s a good thing. Watching him sleep peacefully and uneventfully was greatly comforting!

On the way to the hospital I was listening to the Newsboys. This song came up and I thought the words were so fitting:

When hope is lost, I’ll call You Saviour.

When pain surrounds, I’ll call You Healer.

When silence falls, You’ll be the song within my heart.

– “When the Tears Fall” by Tim Hughes

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Back in ICU

Last night (around 4 am Saturday) John had a bit of a fever so they moved him to ICU B in the morning. This is a unit for patients who are not as critical as those in ICU A, where he was before. They just wanted to be able to monitor him very closely.

After they removed his epidural Saturday morning he was in a lot of pain (he described it as an 8 out of 10). They started giving him hydromorphone but it did not improve much.

Saturday afternoon his temperature spiked again and the doctors were worried he had developed an infection. They did a CT scan and an X-ray in the evening. His Mom was with him while this happened and kept me up to date. I came back to the hospital after tucking the kids into bed, leaving my parents to sleep on the couches in our living room. (Thanks Mom and Dad!)

After reviewing the scans, the doctor said he is stable enough to avoid doing surgery tonight. He will remain in ICU B overnight and they will continue giving him antibiotics for the infection as well as hydromorphone for the pain. Another complication shown on the CT scan was an ileus in his small bowel, meaning a buildup of material that has stopped moving through his intestines, leading to swelling, pain, and potential blockage.

The other unpleasant thing he had to endure tonight was the insertion of a nasogastric tube through his nose to his stomach. This was to help drain some of the stomach juices and relieve some of the painful pressure in his abdomen.

I should also mention that the good news is, he has started having bowel movements again, but there was a little bit of blood in his stool. Not enough to make them rush him to the operating table but enough that they want to keep an eye on his hemoglobin to make sure it’s not dropping. The CT scan showed that this blood was coming from the same site that was bleeding before, but thankfully it is not bleeding as profusely. Hopefully it starts to heal on its own.

The nurse sent me home to get some rest so that is what I am going to do. Please keep praying.

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4 Replies to “Back in ICU”

  1. I am just now catching up with the news of your week… you all have been on my mind and in my prayers all throughout today and I didn’t know why until I had a chance to catch up with all the update posts I had missed. May God give you the rest you need tonight and hold you all in his loving hands. The kids and I will continue to pray for your entire family and the hope for a strong and fast recovery! We are here for you if you need anything.

  2. It’s hard to even understand what John and his family is going through. How important is the prayer and support of so many of his friends.
    You come along way, and trusting God to see you through.

    Steve Pater

New Room!

Today John was deemed well enough to be moved from the ICU to the surgical floor. Praise God! He was able to sit up in a chair for a couple hours and started on a clear fluids (and jello) diet. No more bleeding. It sounds like he will continue his recovery there until he meets the criteria to go home. Basically he needs to be able to walk, eat, drink and go to the bathroom on his own.

They removed the catheter from his neck as it was no longer needed for quick intravenous access and blood monitoring. I missed the removal procedure but apparently the nurse satisfied his curiosity and let him admire the 5-inch long object that had been in his jugular.

After doing an ultrasound to check for blood clots in his legs, they gave him compression stockings to wear as a routine precaution. Once he gets up and walking again this risk will be reduced.

He is also supposed to chew gum several times a day to help get his digestive system working again. Fun!

The kids and I miss him a lot and can’t wait till he can come home. We visited him this afternoon and then he called to say goodnight before they went to bed. It’s good to see him looking better everyday. To each person who reads this blog I want to say: Thank you for praying along with us and for reminding me we’re not alone! I hope that you are as encouraged as I am to see how our powerful and loving God is answering our prayers.

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4 Replies to “New Room!”

  1. So good to hear that John is improving. We are praying for him and for you , Leanne as you walk through these days. Many are praying as we are on Wednesdays and also at choir. Our God is the great Healer.

  2. This is an amazing improvement!! Now you can focus on recovering as you’ve made it through the ICU phase. You’ve been in my thoughts and prayers.