October

I’m a bit behind on my updates but I have nothing too surprising to report.

I had a CT scan last month. For my situation, the results were good. The cancer has not spread anywhere else that they can see, however, as expected, the cancer is growing again in both my lungs and liver. 

I will be going back on chemo every two weeks starting Oct. 29. It will be on Thursdays this time instead of Fridays. I liked the Fridays because it meant I would be unavailable for a minimal number of business hours. I lost a little time Friday afternoon and Monday morning while I did hyperthermia but those hours were easy to make up. Unfortunately, they weren’t able to put me on the same schedule this time. For the first cycle, I’ll be on only 2 of my 3 usual chemo drugs due to my stoma incision that refuses to heal. We are skipping the panitumumab as it can impair healing, and this wound is taking long enough to heal as it is. That drug is likely the reason why my toe took so long to heal. I’ll be rash-free for awhile as panitumumab is the drug responsible for that side effect too.

My stoma incision is getting much closer to being fully healed though. The drainage is negligible. 

Leanne is now 22 weeks pregnant and is doing well, although we can no longer use Hubert as a pseudonym for the baby after her most recent ultrasound. We’ll have to change it to something a bit more feminine like Huberta.

Poor Harry. His hopes of no longer being outnumbered by little sisters have been dashed.

In all seriousness though, we are thankful that there have been no complications with this pregnancy so far. Thank you for continuing to pray for Leanne and the baby’s health.

As for me, please pray that the chemotherapy will keep working and that I’ll be able to tolerate the side effects.

Great News!

The surgeon who checked in on John this morning was concerned that his abscess had not been drained yet. He said that Monday was way too long to wait and he would definitely push for it today.

Just to give a bit of background, when they insert the tubes through his skin to drain the infected fluid from his abdomen, they use medical imaging for guidance. Apparently the CT scan machine that they normally use was undergoing maintenance, but by using ultrasound instead, they were able to do the procedure this morning. Thank You, Lord! What an answer to prayer. John came back to his room to find lunch waiting for him: jello, broth and orange juice.

It may take a few days for the abscess to be fully drained. By this evening, John said that his pain had already started to subside a little. We still haven’t heard when exactly he will be able to come home, but at least we are one step closer to that happening.

I know our church was lifting us up in prayer last night at the weekly prayer meeting, and many others were praying as well, so thank you! I’m so grateful to the brothers and sisters in Christ who have brought us meals and helped in practical ways (you know who you are). Thank you for being the hands and feet of Jesus.

Today was Maggie’s birthday, by the way. Daisy’s was last week, and thankfully John was still at home then. Although he didn’t get to be with us in person today, he still joined in watching her open her present and blow out her candles via FaceTime. She was a very happy three-year-old. All in all, it was a very good day.

Back in the hospital

John seemed to be doing so well last week, but over the past couple days the pain in his belly increased unbearably. Tonight, an emergency CT scan revealed that he has a 12-inch abscess in his abdomen, something that the ER doctor said tends to present itself around this time, two weeks post-surgery. It basically means that a great deal of pus is accumulating in his belly as his immune system mobilizes to fight infection. The pressure from the pus is causing his pain. Tomorrow they will drain it and likely give him antibiotics. He will have to stay in the hospital for four to five days. While I can’t say we’re thrilled about this, it is a relief to know the cause of his sudden severe pain and that they can fix it soon. I’m also thankful that he didn’t have to wait very long in the ER this afternoon. He went in around 2 and had the CT scan around 7:30. In the meantime, he got to be in a private room with his own bathroom and they gave him morphine to cope with the pain. The kids and I got to FaceTime him while we ate our supper (still no visitors allowed obviously). Please keep us in your prayers as we get through the rest of this week!

CT Results – June 2020

Summary

Thank you all for your continued prayer. Here’s a very brief summary of what has been happening since my last post.

COVID-19 Tests: negative
Nausea: cured
CT Scan: good
Ostomy reversal: in progress
Toe: healing

The COVID-19 tests

In addition to the ferocious interrogation to which I am subjected upon entering the hospital, Ontario Health has decided to award all of us cancer folk regular COVID-19 tests. This may not sound all that bad unless you know what the test entails. Let’s put it this way: I prefer rectal examinations.

You know you’re in trouble when the nurse administering the COVID-19 test asks you to try not to punch her (the nurse seriously said this to me before my first test). It makes sense though once the nurse has driven the 10ft swab up your nose and into your brain as hard as she possibly can. Once most of the gigantic swab is inserted and your cries of pain are at a sufficient decibel level, the sadistic nurse then begins twisting the swab around which only increases the agony. I had no idea there was that much room up there. (It certainly gives some credibility to Homer’s crayon incident.) Both tests were negative, by the way.

COVID-19 Test

Chemo

No more nausea. After 3 unsuccessful prescriptions my oncologist finally prescribed me a nausea pill that works. A single pill is supposed to prevent nausea for a week. I only needed 3 days. It costs around $150 per pill (thanks Trillium) but I’ve taken it before my past two chemo treatments and have experienced absolutely no nausea. I was even able to eat a bit on those weekends. I still somehow managed to lose 10 lbs but I gained it back quicker this time than I did after the chemo weekends when I ate nothing due to the nausea. 

Last month, at my oncologist visit, he told me my CEA marker was down to 4. This is good. At my appointment today I was told my CEA level was now at 1.7. This is great. When I was first introduced to Tony my CEA was over 800. Obviously the chemo is working. The longer the chemo works the longer I get to live. My oncologist was pleased enough with how my treatment is going that he decided to reduce the dosage of one of my chemo drugs to help clear up my spectacular rash. With the creams, antibiotics and reduction of the chemo drug, I think I am noticing a slight improvement of my rash. It is hard to tell though, as my rash covers every part of my body now, from the top of my head to my feet, and I heal so slowly that new flare-ups can be difficult to notice.

My oncologist has also reduced my Grastofil again down to 5 injections per treatment as my white blood cells are still nice and high.

The CT Scan

They let me keep my clothes on! I had to drop my pants right before they slid me into the machine but it sure beats having to wear a hospital gown. My CT scan was last week and I just received the results today. Actually I had access to the images a few hours after the scan was done, however they don’t include the radiologist’s report so it’s kinda useless unless you know how to read the scans. They are fun to look at though. I think I can identify liver lesions now. My oncologist is pleased with the results as they indicate that the chemo is still working. The nodules in my lungs have “significantly decreased” since my last scans and the lesions on my liver have also decreased in size. The oncologist says that I’m in a good place to take a few months off from chemo. We decided to wait and see when my ostomy reversal surgery will be and then take a several month break from chemo at that point. Yes, I will be back on chemo after I recover from my ostomy reversal. I’m doing two more chemotherapy treatments in June (June 12 and June 26) and then hopefully I will have a nice break while I await my ostomy reversal.

Here’s one of my CT scans. I’ll include the report at the bottom of this post. If anyone else wants to play “radiologist” I’m happy to share the DICOM files.

Ostomy Reversal

I had a phone call with my surgeon a few weeks ago to initiate the ostomy reversal process. He has scheduled some tests this month for me to confirm it is safe to do the reversal. First, on June 16, I’m having a Flexible Sigmoidoscopy. The way it was explained to me is they are going to “inject dye up the bum” (yes, my surgeon said “bum”) to make sure there are no leaks. Next, on June 25,  I have a Gastrograph which, after scaring myself by accidentally searching for “Gastroscope”, is just a fancy word for stomach x-ray. Then on July 3, I meet with the surgeon for the results and if everything is ok, he’ll book me in for my ostomy reversal. I miss pooping.

Prayer

Thank God that my nausea seems to be cured. I’m also thankful to the real smart people who made the fancy anti-nausea drug.

Thank God that the chemo is still working!

Pray for my poor wife who has had to work extra hard these past weeks since my toe has been preventing me from helping out as much as I normally would.

Please pray that my pre-ostomy reversal tests will be successful. I’m not looking forward to the Sigmoidoscopy but it can’t be worse than the COVID-19 test… can it?

Please continue to pray for my protection from COVID-19.

My toe could still use some prayer. It is still not quite healed (7th week) likely due to the chemotherapy. It’s really annoying and scary as the toddler and the dog show no regard for my toe’s well-being as they frolic haphazardly around the house.

Next

If my Sigmoidoscopy proves interesting enough I’ll try to make a post then, otherwise expect to hear from me after I talk to the surgeon on July 3.

CT Report

 

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.

 

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.

September: CT Results

My oncologist surprised me yesterday with a call. I was initially a little worried as I have a scheduled appointment with him next week so I thought perhaps he had bad news that must be acted on immediately. The news was actually good. He gave me the results of my CT scan. My lungs appear to be cancer-free. The large lesion of my liver has again shrunk and the doctor is not even sure the other liver lesions are cancerous; they may just be scar tissue. He also confirmed that the primary tumour has shrunk.

To help the surgeon determine the feasibility of surgery, I’ll have an MRI on Wednesday, Sept. 11, and they will likely discuss my case again at the tumour board next Friday.

Thank you for continuing to pray for us.

The Results

I’m not sure if it is actually a chemotherapy symptom but my head has been feeling a little cold as of late.

No hair John

I met with my medical oncologist today and he went over my CT scan results. I’ve attached the report below in case you like reading that sort of thing. I found the term “palliative chemotherapy” a little unsettling.

God is healing me. I didn’t quite get the cancer cure I was praying for, but He appears to be working through the chemotherapy. The nodules in my lungs are almost completely gone. There is just one little nodule remaining. There are still lesions in my liver but they are decreasing in size. I hadn’t realized how big the largest lesion actually was. There is no news on Tony, just that “the irregular thickening of the wall of the rectum is again seen in keeping with patient’s known primary malignancy.” I still maintain Tony has shrunk, as I am pain-free and my bowel movements seem to have greatly improved.

Since my body is reacting so well to the chemotherapy they are going to let me have another 3 months of treatments with the added bonus of continuing with Grastofil injections.

Being alive is nice, so I can’t complain.

I am very thankful for all those who are remembering to keep us in prayer.

I’m still feeling great and ready to tackle my next chemotherapy treatment which is tomorrow: Friday, May 31. Please continue to pray that the chemotherapy keeps working or that preferably, God would just completely heal me.  Actually, just pray for God’s will to be done. His plan is best. As Jesus said at the end of Mark 14:36 while praying in the garden of Gethsemane, “Yet not what I will, but what You will.”

I’ve decided not to be nauseous on day 3 anymore, but just in case my body decides not to listen to me, a little prayer would be nice as well. 

I have been going through a Reading Plan in my Logos mobile app on prayer, and yesterday just so happened to be Luke 11:5-13, which is the verse I referenced in my first blog post back in January about praying boldly. I still find it a fascinating passage. It was a good reminder for me to pray without ceasing and to pray boldly.

P.S. Just a warning to all you worriers kind-hearted, concerned people, I may not blog for a while unless something important or interesting or entertaining happens in relation to my health. Chemo is becoming an unfortunate part of my routine, as are the symptoms. I’ll at least try to post an update before my next chemotherapy treatment which is on Friday, June 14.

My new glasses
Figured I should get a new pair of glasses to go with my new look

The kids with their tongues sticking out

 

 

CT results coming next Thursday

This post may be a bit on the longer side, but it makes up for my sparse postings this month. In case you just want the quick facts:

  • Last chemo: similar symptoms as previous
  • CT results: Thursday, May 30
  • Next chemo: Friday, May 31

Want a little more? Keep reading.

I had my CT scan today in Cambridge. It was much quicker than my last scan at Grand River back in January. We were back in the van within 45 minutes. Unlike Grand River they made me drink my barium sulphate suspension at home which sure beats drinking it at the hospital and waiting for an extra hour. It doesn’t look very appealing but the taste was acceptable. Well, acceptable enough to drink the 1.5L without vomiting. I was pretty thirsty by that point in the day anyway as I was not allowed to eat anything or drink anything for 4 hours prior to my scan, so it was somewhat nice to have at least something to drink again.

Barium sulphate
Barium sulphate

They gave me the contrast dye again. It has a rather interesting side effect while it is coursing through your veins. It makes you feel like you are going to the bathroom. Fun stuff. I found it more disturbing the first time as I was concentrating hard to hold my breath at the correct time and didn’t like the idea that I could be urinating all over their multi-million dollar machine.  This time I barely felt the sensation. The CT scan felt routine and I suppose it will be a regular routine for the rest of my 60+ years of life.

The nurse had trouble setting up my IV for the dye injection today. It was weird because I’ve had numerous IV’s in that arm. I get so many things inserted into my arms that I felt it necessary to assign different designations to each arm based on the direction of flow of the fluids inserted or removed. My left arm is my “in” arm which is where I get my weekly vitamin C and mistletoe IV and my right arm is my “out” arm where I have my blood test samples taken bi-weekly. Anyway, I’m not sure why the nurse had trouble with my “in” arm as my veins were clearly visible from the outside but she just couldn’t quite get the needle inside the vein once inside my arm. It was actually pretty cool to see her wiggling the tip of the needle around inside my arm trying to catch a vein. At first, I was a little shocked but since it didn’t hurt I was rather fascinated by the process. After the second needle poke in my left arm and subsequent fishing for a vein she gave up and used my “out” arm instead, catching a vein on the first attempt. I’m really getting used to and tired of being stabbed. 

Speaking of getting stabbed… During my last chemotherapy session, I happened to catch a glimpse of the port-a-cath needle that gets inserted into my port every chemo session and delivers my drugs for two days. The thing is huge! My port-a-cath is on my right shoulder so the nurse usually does her prep work on my right side. Often I don’t notice what she is doing due to my lack of vision on my right side but I sure did this time. I’m glad this was not my first plug-in or I might have been a little apprehensive. It is kind of disturbing though, as they really jam it in there. I find it helps to inhale when they insert the needle but it is still rather unpleasant to feel a sharp object poking through my chest.

Port-a-cath needle
Port-a-cath needle

The symptoms from my last chemo treatment were basically identical to my previous one. I will add that Sunday was probably my best day 3 yet. I ate more, felt less nauseous, and was moving around a little more than usual.

I can’t blame this solely on my last chemo session but I am definitely losing my hair. I hadn’t really noticed as I am not due for my annual look-at-myself in the mirror for another few months, but Leanne took a photo of me on our hike at Shades Mill tonight and I was shocked to see how thin ridiculously patchy my hair has become. I think it is time to shave it off.

Hike at Shades Mill
Daisy, Harry, John and Magnolia on our hike at Shades Mill

My poor patchy head

One more thing: Sometimes people assume the worst when I don’t post anything on the blog. They wonder if something dire must have happened to me. Let me try to clear this up. If I don’t post, it’s because I am feeling great and/or I have nothing of significance to report. My conscience will not allow me to flood your inbox with daily “I’m doing ok” mass emails. Don’t worry; if I am ever unable to share significant information, mi esposa has access to our blog and will post an update on my behalf.

I actually do enjoy writing these posts; my enjoyment is directly proportional to the number of giggles I hear from Leanne during the proofreading stage (also known as the making sure I don’t say anything too offensive stage). While I started this blog primarily as an efficient way to update the many people who were praying for us, I also hope that people will see how God is working through our situation, how He answers prayer and that He is in control. My CT scan might show new little Tony’s throughout my body or Tony could be gone completely. I’m cool with whatever the scan may show because God is calling the shots, not me.  

Thank you, everyone, for praying for us and for reading my posts.

Please continue to pray. 

God is good.