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.

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August

Summary: I still have a drain and my stoma incision is leaking, but God is good and I feel fine.

  1. The Hospital
  2. The Oncologist
  3. The ER
  4. The Surgeon
  5. Hubert
  6. Pray

The Hospital

I wasn’t expecting to be released from the hospital so soon. The Saturday night before my release I was laying in my bed praying and contemplating how many more days I would spend away from my family when my doctor showed up. Normally I get a visit from a doctor in the morning, never in the evening, so I was quite surprised by this visit. I was even more surprised and overjoyed when the doctor told me he was going to send me home in the morning.

I felt pretty good. My drains hurt when I moved but that was about it.

I was home Sunday afternoon and it was wonderful.

The Oncologist

I met with my oncologist last Wednesday, August 19. Prior to my appointment I had to get blood work done which meant a long walk across the hospital and back for me and my drains. I made it, although it took awhile. My oncologist has booked me in for a CT scan on September 16, and on September 18 we’ll discuss the results. If things are good, he may keep me off chemo for awhile longer.

The ER

Last Friday, August 21, my home care nurse (who is awesome by the way) told me to go to the ER. She was concerned about the increased volume of fluid that was coming out of my stoma incision. She discussed my case with one of the doctors she works with and they suspected I had a fistula. I got to the hospital around 1pm and they eventually gave me a CT scan to see if there were any issues. The CT scan was good. They were concerned there could be a new pocket of fluid beneath my stoma incision that was causing the increased stoma site drainage but there was not. They still suspected I had a fistula but they can’t tell that from a CT scan. There was nothing urgently wrong with me so after waiting around a couple more hours for a surgeon to review my case they did eventually send me home! I had a nice private room and bathroom for most of the day in the ER but then they decided I wasn’t sick enough to justify a bed so they made me sit in an uncomfortable chair while I waited for the surgeon. I spent 12 hours in the ER that day but that’s ok because they sent me home. I had leftovers from Daisy and Magnolia’s birthday party that I missed when I got home at 1am.

The Surgeon

On Thursday, August 27, I had my follow-up appointment with my surgeon (from my ostomy reversal). He said that my left drain could come out but he wanted to leave my right drain in as he saw a little more fluid on my right side in last week’s ER CT scan. He also confirmed I had a little fistula and that it should clear up on its own, although slowly. I have an in-person appointment with him next Thursday, September 3. I have an ostomy bag over my stoma incision right now just to catch all the not-so-nice smelling fluid that is leaking from the incision. The amount went from around 60mL/day to now around 5mL/day. My right drain has been immeasurably low (0mL) for over a week now. I expect the surgeon will order the removal of my right drain when I see him this week.

I was taking Tylenol earlier last week but I haven’t had enough pain to warrant any sort of pain medication for quite a while now. My right drain site still hurts a bit but I am moving around a lot more than in previous weeks.

I just wish I could have a shower. I am long overdue.

Hubert

In case any of you are not on the Facebook, Leanne and I are having another baby who is due March 1, 2021. To continue my father’s tradition of assigning a prenatal pseudonym to new babies, this baby will henceforth be referred to as Hubert until we are sure about the gender or the baby is born. Hubert was unplanned, at least by us. We always wanted a fourth little munchkin (I don’t like odd numbers) and despite my condition we were seriously considering having another one back in February. Those dreams were quickly shattered when we were told my cancer was growing again, which caused us to make the difficult decision that we were done having children. We were so sure about it that we immediately went out and got a dog and started giving away the baby stuff.

Apparently our plan differed slightly from God’s plan because we experienced a minor birth control issue on ovulation day. It’s actually rather surprising we got pregnant at all because apparently it’s common for chemotherapy patients to struggle with infertility. Not me! 

According to the manufacturers of my chemotherapy medication, pregnancy is not a good idea while using said drugs. However, we could not find any data that says why it’s not a good idea. Even my oncologist didn’t have any answers. I think the lack of data is related to the typical age of people with cancer. We are going to do a little extra non-invasive testing with this pregnancy just so we have as much data as possible if there are any issues with little Hubert’s health. We are so happy and thankful to God for this new life!

Pray

Thank you for all your prayers. From getting my drains installed sooner than expected to being released from the hospital, God has answered our prayers.

  • Please pray that my fistula would heal on its own and heal quickly.
  • Pray that my CT scan will justify a further extension of my chemotherapy break.
  • Pray for Leanne. She has been doing so much for me this past month while fighting through her first trimester nausea. She is feeling better now that she is in her second trimester. Pray for strength for her as she soldiers through this pregnancy while dealing with my health issues and homeschooling our children.
  • Pray for little Hubert. Pray for his (or her) health and that my chemotherapy drugs will not have any affect on him. 
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Home Again

I have more good news to report: John came home from the hospital this afternoon! He has two drainage bags still attached to his abdomen, but they look practically empty. Eventually, his home care nurse will remove them. In the meantime she’ll be checking on him daily.

Thank you again for all your prayers and support!

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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.

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3 Replies to “Great News!”

  1. Yay God! Encouraging news!!!
    Happy Birthday Daisy!! Belated Happy Birthday Maggie!

    Continuing to pray for you all🙏❤️

    1. What a precious, gracious God we have to answer the prayers sent from those who love Him and need His help. I pray that the abscess will be drained soon and never to return, and that he will be able to to home to his family.
      Happy belated birthdays to Daisy and Maggie.
      The faith and strength of your family really blesses me. Carry on in His strength knowing many are caring and praying for you. In Him.

  2. Wonderful news that prayers are being answered and John is one step closer to healing and coming home. Happy birthday to the girls. Prayers continue to ascend.

Waiting…

John wasn’t able to have the drains put in today. Unfortunately, unless there is a cancellation, he won’t be able to get them until Monday. At least his pain is under control and he is able to rest. His fever that he had last night is gone too. They moved him to the inpatient surgery unit this morning and are keeping him on a diet of ice chips so he will be ready just in case there is a spot to fit him in. Thanks for all your messages of encouragement and prayers. They mean a lot. Please pray that God will make a way for him to get the procedure he needs, that Lord-willing he can come home to us sooner rather than later.

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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!

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2 Replies to “John is home”

  1. That is so encouraging to hear, and an answer to prayer! God is so good!
    I continue to pray for Continued healing for John, and for you Leanne as you balance so much, and for your dear kids.
    Blessings!

Post-surgery Update

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

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One Reply to “Post-surgery Update”

  1. Thank you for the update Leanne. We have been praying and will keep doing so. So glad John made it through. W pray he will heal quickly and be able to come home for the girls birthdays. Take care and God bless.
    Marty and Janet

Ostomy Reversal Surgery July 28

Summary

  • Sigmoidoscopy: Passed
  • Gastrograph: Passed
  • Surgery: booked July 28
  • Chemo: break until at least mid-August

Details

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.

Blausen.com staff (2014). “Medical gallery of Blausen Medical 2014”. WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436. – Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=28909218

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.

Please pray:

  • 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.

 

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2 Replies to “Ostomy Reversal Surgery July 28”

  1. Glad to hear the good update, bro! What an ordeal for you 🙁 We’ll be praying for you and Leanne especially leading up to July 28.

  2. Wonderful news John, that the surgery will be going ahead soon.
    We will continue to pray for a successful outcome and for Leanne as she handles all the responsibilities.
    Please know you are always remembered and prayed for by the Benton family.
    Marty and Janet

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

 

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2 Replies to “CT Results – June 2020”

  1. Thanks for the update John. Glad to see some positive results.
    We continue to pray for you as does our whole church family every Wednesday night and Sundays.
    God bless you and Leanne and your family as you live each day trusting Him.
    Marty and Janet

  2. I’m sorry you had such a rough nasopharyngeal swab done! After swabbing over 700 people, I’ve had numerous comments saying that the hospital staff are way more aggressive than us paramedics were. Hopefully you don’t have to get it done again, as I know it is unpleasant. Hope you continue to heal up and progress in the positive direction!