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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  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!

Pandemichemotoe

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

 

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

The pandemic

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

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

Chemotherapy

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

Mario mask

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

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

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

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

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

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

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

When I am not on chemo I still feel great.

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

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

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

My toe

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

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

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

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

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3 Replies to “Pandemichemotoe”

  1. It is so good to hear from you after such a long time, although I know you won’t always feel like writing updates. I’m sorry about your toe. I had and now again have an ingrown toenail and they are terribly painful, and I’m sure things just pop out in front of you so that you can bump your toe on them. Praise the Lord that otherwise you are doing fairly well and have been protected by our Lord from Covid-19. We will continue to pray for your requests. Thanks for reminding us of them. In Him, Marilyn Borland

  2. We are continuing to pray for you John and your family , as are your whole church family. We are praying for protection from the virus as you go through chemo treatments and now we can pray more effectively for your other requests.
    We also are praying for all the patients at hospitals who are infected and battling the virus and for others for protection from it.
    May God give you strength for each challenge each and every day.
    Marty and Janet Roberts

  3. Good morning John! I pray for you, your family and the extended family very day and ask God to heal you and protect all of you from infection. It is often hard to know what God has done and what He is doing until you look back in time. Even then it is only through the prompting of the Holy Spirit that we recognize His touch in our lives. My prayer for you right now is that you feel His presence and recognize His love for you!

I’m feeling rather speckled

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

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

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

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

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

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

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

Thank you everyone for your prayers.

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

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2 Replies to “I’m feeling rather speckled”

  1. It is both difficult and refreshing to read your posts, but thanks to God He has given you a sense of humour. I live with my cousin in a condo and we are both 74. (Only have the minds of a 40-year-old.) However our bodies are belying us.
    We will be praying for you and your family as you all go through this very hard time of God’s choosing. Only He will ever know the ‘why’ to these questions we ask. He never ever told Job why he went through the horrible things he went through, even when he asked. Only in heaven would he know. As Paul said, what we are going through here isn’t worthy to be compared with what we will have in heaven. God loves you deeply and is ALWAYS with you.

    When I take the dog I babysit for a walk at night (not often) I get a little nervous so I sing to myself. The song I sing is “I know who goes before me, I know who stands behind. The God of angel armies is always by my side. The one who reigns forever, He is a friend of mine. The God of angel armies is always by my side.
    And nothing formed against me shall stand. He has the whole world in His hands. I’m holding on to His promises. He is faithful, He is faithful.
    I know who goes before me……….
    It just gives me peace and makes me smile.

    May God give you the strength you need to go through your chemo and may the chemo do it’s job. Peace to you and your family in knowing God’s presence.

    Love in Christ

    1. My sis died from cancer
      Now my Br in law has it
      Most of us have been affected by it
      Or have a deep understanding
      Keep reading what to eat and baking soda and lemon
      Anything bitter like grapefruit walnuts
      Those lacking sugar and bright in colorSpeckle is something I’ve never heard and pray is true to show healing
      We will pray