Category: Updates

Posted on by John Clark

Pandemichemotoe

Bottom line: I’m still alive. Chemo is hard. Please continue to pray.

 

It’s been awhile since I have posted anything. It’s taken me almost 2 months to come up with anything noteworthy to report. I even had to go to the trouble of messing up my toe again just so I could make this post more interesting.

The pandemic

So far we are unaffected. I have a nice spreadsheet of all reported cases from around the world because I like data and spreadsheets. I’ve been working from home for over 7 years now and we’ve been homeschooling for roughly the same amount of time. We are all quite used to being together all the time.

I am one of those people with an underlying health condition due to my immune system trying to heal me from the havoc of chemotherapy every two weeks. If you have a little extra prayer time after you have prayed for the people who have COVID-19 and after you have prayed for all the nursing home residents, you could pray for a little protection for us immunocompromised folks.

Chemotherapy

I do not like chemotherapy.  My treatment is considered “essential” so I still get to go to the hospital every other week for my dose of poison. I get to wear a mask now at the hospital. I didn’t like the ones they gave me so my mother made me a Mario one.

Mario mask

To comply with social distancing the hospital removed half of all the chemo chairs in the room so it’s really nice and spacious now. The downside is that no visitors are allowed. As usual, I bring my laptop and I get to work in peace and quiet for 5 hours or so.

As someone who was hospitalized for 15 days last November, I especially feel for all the patients in the hospital that can’t receive visitors right now. Staying in the hospital is bad enough but I can’t imagine being stuck in there without your family or friends being able to visit. Please pray for all the hospital patients.

My chemo treatments have still been tolerable, although I have been extra nauseous during the past few. I’ve been dry heaving multiple times on day 1, 2 and 3 and even managed to actually vomit a few times now. This is different from last year. I am trying some new nausea pills this time, so please pray they do the trick.

It’s been very difficult to eat or even drink anything on the weekends I have chemo. I traded in my water for apple juice which has helped me drink more fluids. I don’t even bother trying to eat because my appetite is non-existent. This only lasts until Monday, Day 3, when I feel about 95% like myself. By Wednesday, I am back to 100%. My current post-chemo craving is a Mango Pineapple smoothie from McDonald’s. I’ve been having one every time after we return home from my Day 3 hyperthermia session.

On my last two chemo treatments I managed to drop over 10 pounds from Thursday night to Monday morning. I gained most of it back over the following week, but I thought 10 pounds in 3 days was impressive (or perhaps disturbing would be a better word). There has got to be a weight-loss product idea in there somewhere…

My next chemotherapy treatment is booked for May 15. I can’t remember how many more I am to have but there should be a CT scan coming up soon.

My rash is still quite present. It’s on every area of my body except my feet. I am taking antibiotics and have a few skin creams to help keep it at bay.

When I am not on chemo I still feel great.

Leanne and I are old pros at ostomy care now. I need her help due to my lack of depth perception. She’s better with stickers and scissors anyway. I was hoping to have my ostomy reversed soon but that is a non-essential procedure so I’m stuck with my bag for awhile longer.

My dear wife is now an expert at giving me my Grastofil injections. All the post-surgery daily anti-blood-clot injections must have helped build her confidence, because Leanne is now an expert at stabbing me. She was worried about hurting me in the beginning, which actually made it hurt worse. Now she doesn’t hesitate, she just jabs that needle in my leg and we’re done in no time. The injections are merely a slight distraction from our conversation.

On my last visit to the oncologist my white blood cell count was so high that he told me to do fewer Grastofil injections. Instead of 7, we are now doing 6 per treatment and will likely be going down to 5. This would be much more significant if we had to pay out-of-pocket for these needles that cost $140 each, but the manufacturer and Trillium are still footing the bill. (Thank you all for paying your taxes.)

My toe

Remember my ingrown toenail I had back in August? Well it came back. I was SUPER careful, I was too scared to cut my toenail at all, but it still came back. I didn’t let it get as infected as last time though before going to my family doctor. He had his colleague, a nice young doctor who couldn’t have been more than a year or so older than Harry, do a different procedure which essentially removed the overgrown skin from the sides of my toe.

This Vandenbos procedure has a longer recovery time than my last toe fix in the ER (6-8 weeks vs. 1 week). As of yesterday, Tuesday, it will be 2 weeks since I had it done. I still have to soak my toe 3 times per day for 4-6 more weeks. The pain isn’t too bad but much worse than in August. I have some neat photos but Leanne won’t let me post them.

If there is still room left on your prayer list, I suppose my poor toe could use some prayer as well, although I’d still prefer you pray that God will heal me from the cancer.

My next post will likely feature something regarding a CT scan unless something else exciting happens to me in the meantime. You know I still have 9 toes that aren’t currently ingrown…

Posted on by John Clark

I’m feeling rather speckled

I’ve been feeling a tad speckled as of late. My rash is back in full force, which is probably a good thing actually. Apparently the rash is a sign that the chemotherapy is working which means longer life.

I made it through last week’s chemotherapy session fairly well. I decided to try doing a partial fast the day before, during and after my chemo treatment which is supposed to help make the cancer cells more vulnerable to attack. Eating post-chemo has always been challenging anyway, and since my weight has been adequate and stable, it made sense to attempt this. I hope it helps.

I was mostly just tired, sleeping as much as I could, anxiously awaiting Monday when I knew I would feel better. Unlike most people, I don’t look forward to the weekend as every other one will be the start of a chemo treatment. 

I was nausea-free until just after the nurse disconnected my “bottle” on Sunday. Then I dry heaved a couple times. Immediately afterwards I suddenly had an appetite and ate a spicy chicken wrap my dear wife assembled for me.

I have been craving spicy foods a lot lately. I normally love anything spicy, but Monday and Tuesday post-chemo anything spicy tasted extra wonderful. This was a little odd as usually chemo makes everything taste less appetizing.

I’m already prepping myself spiritually, mentally and physically for my next chemo session which is this Friday, March 6.

I’ll be sure to post again if anything remotely noteworthy occurs.

Thank you everyone for your prayers.

Please continue to pray that the chemo works again to rid my body of this cancer.

Posted on by John Clark

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.

 

Posted on by Leanne Clark

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.

Posted on by John Clark

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
Posted on by Leanne Clark

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!

Posted on by Leanne Clark

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

Posted on by Leanne Clark

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

Posted on by Leanne Clark

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

Posted on by Leanne Clark

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