Second Line

After four years of the same chemotherapy treatment it appears to have finally stopped working as well as it did at first. I have a CT scan booked for Monday, February 6, to confirm this suspicion. Over the last few months the amount of CEA (carcinoembryonic antigen) in my blood has continued to rise and I have been feeling increased pressure in my lower back. It is now time to begin a second-line treatment.

I mentioned a new drug trial in a previous post and am now in the process of being enrolled. A lot of these types of trials are done in Toronto but this particular one is actually taking place at my local hospital in Cambridge. The trial is specifically for second-line stage 4 colorectal patients which exactly describes my situation.

My oncologist described this trial as intensive–not that the treatment itself is harder to endure, it just involves a greater number of appointments for me. I will be undergoing a barrage of tests before and during the trial. Sounds like I will be at the hospital even more than I currently am.

There are two arms of the trial, the standard care group and the experimental group. I may or may not be selected for the experimental group, however even the standard care group still provides better treatment than the typical second-line treatment I would receive if I did not participate in the trial.

If I am selected for the experimental group it will mean spending two full days at the hospital every two weeks instead of my usual single day. Unfortunately this means my standard Friday chemotherapy day will need to change. Currently it sounds like my treatment days may be Wednesday and Thursday. If I am in the control group I will only need to spend one day at the hospital every two weeks for treatment.

Besides hopefully postponing my death a bit longer, the new drugs are not as likely to cause diarrhea or a rash. The base treatment drugs are similar to what my mother went through last year and she, unlike myself on my current regimen, did not need to rest for two days post-treatment. This makes me hopeful that I won’t need as much downtime after my treatment, especially since it will be in the middle of the week.

I am well aware that I have surpassed my initial one- to two-year life expectancy. I still get quite the surprised reactions from doctors when they learn I have been on the same treatment for four years. Whenever highly educated people are surprised I think that is a pretty clear sign that God is working. I thank God constantly that I am still alive and get to enjoy my family.

These could be my last days here on earth. I hope not, but they could be. God has seen me through four years of constant poisoning, surgeries, and countless hours on the toilet. I pray that He will give me at least another four years. I will not give up. I have four little motivations at home to keep on fighting.

Please pray for my healing, whether it be through this new treatment or preferably just a nice miracle. Whatever happens, may God’s will be done and may He be glorified.

Life is short

Life is short. I am constantly reminding myself of this fact. For a Christian, this life is also a temporary one, a tiny speck of eternity.

Recently my mother has been diagnosed with stage 3 cancer. She has been told that her cancer is curable, but still, she is finding it a bit overwhelming to be in the patient’s chair this time instead of the caregiver’s. Please pray for her as she goes through several more months of chemotherapy.

As for myself, I am just finishing a 2-month break from chemotherapy. My ostomy wound has once again completely healed and hopefully my fistula has healed as well. I will be starting back on chemo this Friday, Sept. 10.

Before my break, my CEA test revealed that the last batch of chemotherapy is still working which, according to my mother’s oncologist is “amazing.” I get the sense that it is not common for the same chemotherapy drugs to remain effective for this long and that she (the oncologist) was a little surprised that I am still alive. I am thinking that prayer may have had something a lot to do with it.

I had another CT scan last month which, unsurprisingly, showed the cancer was growing again in my lungs and liver. I also had a CEA test which showed levels in the 50s again, confirming this growth. My oncologist thought it would be best to resume treatment very soon.

I have thoroughly enjoyed my break. It was so wonderful to be “off the toilet” for awhile. We were able to get away for a few weeks this summer camping in our little tent trailer. I went canoing for the first time and only crashed a few times.

We also rented a bouncy castle for the girls’ birthdays and hosted a neighbourhood kids’ club in our backyard, run by our church. Both events were a lot of fun for our kids.

Poppy is now 6 months old and getting nice and pudgy. She is working on sitting up on her own and enjoying real food. She is a pretty happy baby as long as no one ever leaves her alone which is not usually a problem now in our household. 

We are year-round homeschoolers, taking breaks whenever we need them, so right now when many children are going back to school, we are just picking up where we left off before our last camping trip. Magnolia is 4, Daisy is 6, and Harry will be 9 in November. They would be entering JK, grade 1 and grade 4 respectively.

In their homeschool lessons this week, the kids learned that God has a plan for our lives (Jeremiah 29:11) and “will put beautiful crowns on their heads in place of ashes” and “give them a spirit of praise in place of a spirit of sadness” (Isaiah 61:3 NIRV). With that in mind, we praise Him for all the beautiful things he has allowed us to experience this year, like Poppy’s birth and our summer outdoor adventures.

Pray that God will continue to do amazing things in my life and that my chemotherapy will continue to work. I know one day it will inevitably stop working, but I am at peace with that because I know I will spend eternity with Him. Until then, I’ll continue to enjoy the life He’s given me and do my best to honour Him with it.

 

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