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

 

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…

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.

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.

 

I’m Back

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.

 

 

In the ICU

 

In my room in the surgical ward

 

Staples

 

Two of my four drains

 

No staples

 

My stoma

Surgery

On October 30 at 8am, Tony and part of my rectum will be removed. I’ll have an ostomy bag for a few months which doesn’t sound like much fun but it should be only temporary and it’s a lot better than being dead. 

I’ll likely be in the hospital for a week. I’m planning to shave a few days off that though by recovering more quickly than expected. I just hope the Wi-Fi at the hospital is good enough to get some work done. With my ostomy bag I won’t even need bathroom breaks.

My rectal surgeon, the one I saw today, is the same surgeon who initially broke the news to me back in January that I was probably going to die. Well, today he was throwing around the word cure in various tenses. The sentence, “There is a chance you could be cured,” particulary stood out. 

This is now the second doctor who has used that word cured to describe my condition. I find this quite interesting, considering that back in January every doctor I met kept telling me my cancer was incurable.  

Praise the Lord!

My weight has been increasing significantly. Since I got off chemo I’ve gained another 20 pounds. I’m around the 170-lb. mark now which had been my typical weight for the past few years. Much better than my lows in the 130’s back in the spring. I’ve even cut back on the poutines.

We need prayer. 

Please pray for my rectal surgeon. Pray that God will guide his hands and that everything will go perfectly with no complications.

Pray for my recovery too. I won’t be able to lift anything heavy, like children, for 6 weeks, so pray for Leanne as I won’t be able to help her out as much.

This is a significant step on my road to complete healing.  My liver lesions will still need to be treated at a future date. Pray that God will continue to heal me.

 

In case you were wondering…

Total number of rectal exams: 5

 

September: Liver MRI Results

My oncologist called me on Friday with the results of my liver MRI and what was discussed about my case at the tumour board that morning. According to the liver surgeons it sounds like they will be able to access my liver (no arteries in the way) to remove the lesions when the time comes. They do want to wait a few months, however, as they need to see what is happening in my liver over time once the chemotherapy drugs are finally out of my system. They need to determine if the other lesions on my liver are cancerous or not before they go in to operate. The lesions are spread out over my liver so they can’t just chop off a single lobe to get them all. Please pray that the other lesions are just scar tissue so the surgery will be easier and safer.

My oncologist has also booked me in for another MRI, this time a pelvic MRI. This will be sent to my rectal surgeon to see if Tony (the primary tumour in my rectum) is ready to be removed. I should be meeting with him a week or so after my pelvic MRI to discuss those results and the consequences of Tony’s removal. Please pray for wisdom and guidance for my surgeon. Pray that he will be able to remove Tony with minimal repercussions.

My oncologist did confirm that I won’t be on chemotherapy for awhile which is nice.

I still feel great. The frequent doctor appointments are the only things reminding me that I even have cancer. 

Thank you so much for your prayers. 

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.

August Update

Chemotherapy is done, at least for now. I was feeling great until I developed an ingrown toenail that is causing me a bit of pain and preventing me from walking. I’m actually writing part of this post from a bed in the ER as I wait for a doctor to fix my infected toe. Otherwise I feel great, although I don’t exactly look great. My rash has come back fairly severely and the doctor does not want to give me any more antibiotics. I still have some of the prescribed cream that I am using, which is helping. They are hoping the rash just goes away on its own since I am done chemo, but it is a little annoying (and a little fun to pick at the scabs).

I keep forgetting to mention another fun side effect of the chemo. My eyelashes are freakishly long.

My Freakishly long eyelashes
My freakishly long eyelashes

 

I have a CT scan scheduled for September 3. If the doctors like what they see, the next step may be surgery. I have a follow-up appointment booked on September 11 to discuss the results with my oncologist. Please pray that the scan will prove that the chemo has been effective and that God will give us strength for the next part of this journey.

July Update

I’ve actually only had a single chemo treatment this month so far, although my next one is this Friday. My oncologist gave me 2 weeks off for vacation. We rented a cottage up at Muskoka Bible Centre at the same time as my mother and my sister’s family. It was a nice, “work less” vacation for me. The kids had a great time playing with their cousins.  For me, I think, the best part was the break from chemo. I’m feeling especially normal as it’s been 3 weeks since my last chemo treatment.

Last week I met with a genetic counsellor to begin the process of determining if I carry any cancer-related genetic abnormalities. It’s a little late for me but this may be valuable information for my children. The counsellor went over my family’s cancer history but didn’t notice any significant patterns that would indicate a genetic cause. She said you would expect to see a few cases of cancer in any family tree, especially as people get older, but hereditary cancer is relatively rare. My age is the main reason my oncologist referred me to the genetics clinic. I agreed to do the genetic testing since it is free and only required a blood sample. I will get the results in a few months.

Yesterday (Tuesday) I met with my oncologist and he talked about surgery again. According to the doctor I actually only have two more chemo treatments left and then I will be having a CT scan a few weeks later (likely at the end of August). As long as the nodules in my lungs have cleared and my liver lesions have shrunk, then he will present my case to the tumour board again to see if a surgeon is able to remove the liver lesions and the primary tumour or if more chemotherapy is needed. Either way, it sounds like I’ll have a multiple week break from chemo in August.

I appreciate your continued prayers as I finish off this round of chemo (the two remaining dates being July 26 and August 9). Please pray that the results of the next CT scan will be favourable and that God will continue to guide the doctors’ decision-making as He has been doing all along.