Great news, everyone! John came home from the hospital today. He is still quite tired and sore, as to be expected, but the surgeon said the stoma reversal went well. Praise God!
I know many of you were praying for John today. Thank you from the bottom of my heart! His surgery got delayed by over two hours, and when he woke up about two more hours after that, he texted me to say, “I am alive.” What a welcome message that was. He was able to call and say hi to the kids too. Since visitors are still not allowed at the hospital right now, I’m glad we can stay connected through our phones. Tonight he was tired and in a bit of pain, but otherwise “great,” eating jello and drinking clear liquids. Lord willing, he should be discharged in a few days once he is eating a normal diet and his bowels start functioning again. Our daughters both have birthdays coming up in the next couple of weeks (turning 5 and 3) so it would be the best present of all to have Daddy home. Whatever happens, I know we remain in God’s hands, and as always we are immeasurably grateful for your prayers.
“Let your steadfast love, O Lord, be upon us, even as we hope in you.”
Psalm 33:22 ESV
- Sigmoidoscopy: Passed
- Gastrograph: Passed
- Surgery: booked July 28
- Chemo: break until at least mid-August
For the surgeon to be able to reverse my ostomy I needed to have two tests done: a sigmoidoscopy and a gastrograph. Here is a brief summary of my experience during each procedure.
My sigmoidoscopy was awesome! Well, except for the fact that I had a camera stuffed up my bottom. The doctor made sure I was able to see the camera screen as he gave me a guided tour of my sigmoid colon. It was really neat to watch, especially the beginning. I saw the outside of my bottom and then the next second he was navigating the camera through my colon. (Check YouTube if you are curious. I didn’t notice a “share” button on the camera screen.) Unlike a colonoscopy, they don’t usually sedate you for a sigmoidoscopy since they aren’t going too far inside the colon, so it was a little more unpleasant than a colonoscopy. The doctor didn’t see any issues preventing me from reversing my ostomy which means I passed test #1.
My gastrograph was not as “fun” as the sigmoidoscopy. Instead of a camera, they shoved a hose up my bum which was held in place by inflating a balloon on the end. They then proceeded to inject dye inside of me and take x-rays to check for leaks. While not the most pleasant of tests, my nurse was one of the nicest and friendliest ones I have ever had. (I actually have yet to meet a mean nurse, at least in K-W.)
I met with the surgeon to go over the test results on July 3. I passed both tests and signed the consent form for him to stuff my stoma back inside. He also took a look at my previous CT scans. This time when he was scrolling through my scans I actually could understand the majority of what he was saying and pointing out due to my hours of studying my own scans. He showed me my first scan from January 2019, and I could easily see all the “shadows” all over my liver which now appear to have mostly disappeared or calcified (my diagnosis, not the doctor’s).
I was originally told that the surgeon has about 100 patients ahead of me and it could take 6 months to get the surgery booked, but someone cancelled. My ostomy surgery is booked for July 28. The procedure sounds simple enough; the surgeon just pulls out my stoma, hooks it back up and then shoves it back in. I should be in the hospital 2-3 days, or using my last surgery as precedent that would be about 11 days.
Since I have the surgery booked I am officially on a break from chemotherapy until at least the middle of August when I next meet with my oncologist.
I will be meeting with my naturopathic doctor as well to see if we can prolong my chemo break with naturopathy. The longer I can avoid chemo the longer it has the potential to work and the longer I get to live.
The next post will likely be from Leanne as she will be sure to post an update after my surgery.
- that the operation will go well and there will be no complications, unlike last time.
- for Leanne as she will be taking care of 3 kids and a dog while I am in the hospital.
P.S. Toe is looking better. Still not quite healed but I expect my healing to improve dramatically now that I am off chemo.
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
CT Scan: good
Ostomy reversal: in progress
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.
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.
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.
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.
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.
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.
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.
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.
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.)
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…
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.
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.
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.
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.
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!