Author: John Clark

Posted on by John Clark

3 Years

Well, I just had my cancer-versary on December 26, 2021. The year 2022 will be my fourth year of chemotherapy. I’m very thankful that God in His mercy has allowed me to outlive my doctors’ expectations.

We continue to be amazed and grateful that my treatments are still working. The reduced, more tolerable dosage seems to be having less of an effect on my CEA levels but it is still moving in the right direction (down). I had a CT scan a few weeks ago which confirms this.

I finally received the results of my definitely-not-free genetic test. It took so long because my blood samples got stuck in US customs and were no longer usable. The chances of the test providing any useful information was slim (think needle-in-a-haystack) but data is always a good thing. The test did indicate my cancer has a gene that will open the door to more treatments in the future. I won’t pretend I understand much about it but it sounds like the test was not a complete waste of money.

Since my current (first) treatment regimen is still working we won’t be taking any action on alternative treatments right now but it is VERY nice to have options.

Speaking of my current treatment, it has been quite bearable. I have even been looking forward (a bit) to my chemo weekends when I get to eat hotdogs! (When you’re on chemo you eat whatever you can keep down. Right now hotdogs work for me.) My bowels are mostly under control, and my nausea hasn’t been an issue for a long time now. My rash is bugging me a bit, especially on my face, but I have a new powerful steroid ointment to try.

I have done 10 treatments since September and will have 8 more before another break. I’ll probably take the summer off.

Living with cancer is not fun but it is living. 

The Clark's Christmas 2021

Poppy will be walking any day now. She is a fast crawler and has siblings who enjoy carrying her around the house too. She turns 1 on February 26.

The kids are doing a homeschool unit on Australia and Oceania, which has involved trying many interesting recipes. For my part, I am currently reading the Narnia series to Harry and Daisy in chronological order. We are on the Voyage of the Dawn Treader.

Harry has been obsessively listening to Adventures in Odyssey, doing about an album a day. He and Daisy even built the town of Odyssey and a few of the characters out of Lego. As a huge AIO fan myself, I couldn’t be happier to see them enjoying my beloved series so much.

Magnolia has been creating many works of art and writing many books (pieces of paper which she asks Leanne to “stample” together). Daisy, when she is not entertaining us with her nativity puppet show starring Mickey Mouse, is asking delightfully literal questions. Probably one of my favourite jobs as a parent is answering their questions.

Please continue to pray that God will heal me, if it’s His will. I hope and pray that He will continue working through my doctors to keep me alive.

The last time the nurse came to our house to unhook my chemo bottle, she looked at our kids and said, “You guys are so lucky!” Maybe that’s a strange thing to say to a cancer patient, but when I look back on the past three years I have to say, God really has been good to us.

Posted on by John Clark

No more brain swabs

Nasal brain swabs

I receive an appointment schedule from the hospital about once a month. The schedule includes the date and times for all my chemotherapy treatments, oncologist appointments, blood work and COVID-19 tests. On my latest schedule I noticed that my monthly COVID-19 test was missing. It seems that the regular testing of cancer patients is no longer required. Yay!

My 14th and hopefully final COVID-19 test was on Oct. 4th. I’ve been having monthly tests since May of 2020. It will be nice to be free from that particular brand of horribleness.

CEA

My blood test from Oct. 4th revealed that my CEA level has once again dropped. It was in the 50s in August and then after only two chemotherapy treatments, dropped down to 14.

The CEA level is a good indicator (in my case) of the effectiveness of my chemotherapy treatments.

Side effects

My last chemotherapy treatment went very well. During the first few days post-treatment I worked really hard, drinking water to stay hydrated. This seemed to actually encourage my appetite as well so I started eating a bit. Unfortunately the only thing I felt like eating was hot dogs but the fact that I wanted to eat anything was good and more surprisingly the hot dogs tasted good. Of course they normally taste great but the chemotherapy didn’t affect their taste.

By Monday I was back to work and full of energy. I had my last hot dog for breakfast Monday morning and was able to eat a little healthier food for the rest of the day. This was a great start to get myself ready to battle the diarrhea that I was sure would be coming at any time. I felt so energized that day that I installed my new network rack, something I wasn’t planning on doing until about a week later when the diarrhea finally subsided. Speaking of diarrhea…

I had none. Usually it starts on the Monday following treatment, but it didn’t come. I suspect prayer, the further reduction of chemo drugs or both has something to do with this most pleasant change. I’ve been practically giddy since my last treatment. It is so nice to have energy and to not be restrained by the toilet.

Rash

Speaking of good things… My rash is back! It is everywhere and looks horrible. Just a reminder to any new readers, this is not sarcasm. Rash=Good. The rash is an indicator that the chemo is working.

When my rash is at its worst I am rather glad that we live in a time where masks are required in public. The only problem is that, generally, people don’t wear masks on video calls. My solution to that was to buy the lowest reviewed web cam I could possibly find on Amazon. I specifically looked for reviews complaining how blurry and grainy the image was. A suitable camera was not hard to find. I also now resort to wearing a hat all the time. My hair has almost completely fallen out and my head is covered in my rash as well. I still haven’t shaved my head as it brings me a small amount of comfort to reach my hand up to my head and feel some hair there.

I was a little worried that the reduction of my chemo drugs may reduce the effectiveness of the treatment but this rash may be a good sign that the lower dose is sufficient. 

Prayer

My next treatment is Nov. 5.

Thank you for your prayers. They are working! According to the doctors, I should be dead by now.

I thank God constantly that I am still alive and how He has so richly blessed me in so many, many ways. 

Please continue to pray for myself and my family.

  • Thank God that we have such a supportive church who are supporting us in so many ways.
  • Thank God that I had such a great recovery from my last treatment.
  • Thank God for my rash.
  • Pray that the treatment continues to work.
Posted on by John Clark

Another Break

I survived my second chemotherapy treatment a little better than the first. At least I didn’t need to go to the ER this time. The reduction of the diarrhea-causing chemotherapy drugs may have helped a bit, but I think my weight loss may have interfered with the doctor’s reduction calculations, which may explain why my diarrhea was still very present. I was able to work a little more in the week following chemo but still not as much as I would have liked.

Next time will be better. I met with my oncologist a week or so ago for my monthly check-up. He is going to further reduce my chemo drugs. I also learned that part of my problem was that I was dehydrated. Apparently lack of hydration can affect your appetite which explains why I was having trouble eating. I have now resolved to force myself to drink my required amount of water, as I understand how important drinking water is to my recovery, especially when I am losing so much from my bowels.

My oncologist also gave me another break over Thanksgiving to get my weight back up. I’m about 10 lbs. lighter than I would like to be at the moment but Leanne cooked a turkey yesterday so I will spend the week eating hot turkey sandwiches smothered in gravy and that should do the trick. (I rather enjoy trying to gain weight.)

My next chemo is scheduled for this Friday, October 22.

On another note, my oncologist recommended a (definitely not free) genetic test which may open the door to other treatment possibilities down the road. Unfortunately, it may also be a complete waste of money. It will be good to have options when inevitably my current chemo drugs stop working.

It’s almost time to shave my head again. I was surprised that my hair would fall out so quickly after only 2 treatments.

My ostomy wound appears to still be healed over and I have yet to experience another abscess in my abdomen which means my fistula has also finally healed.

  • Please pray that I can stay hydrated and that the diarrhea will not interfere too much with my quality of life.
  • Pray that the genetic test will be useful.
  • Pray for Leanne; it has been tough for her taking care of everybody.
Posted on by John Clark

Life is short

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

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

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

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

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

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

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

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

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

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

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

 

Posted on by John Clark

Spring Update

We’ve been a little busy these past few months adjusting to life with little Poppy. Harry, Daisy, and Magnolia have been a great help, always eager to lend a hand. I haven’t been as helpful as I would have liked to be due to chemotherapy and the symptoms caused by the treatments.

I have survived nine chemotherapy treatments so far this year and they still seem to be working. Since my diagnosis, I think I have had over thirty treatments. 

I had another CT scan back on March 30 which confirmed that the latest rounds of chemotherapy are working. The lesions in my lungs and liver have decreased in size again.

A few weeks ago I had my first dose of the COVID-19 vaccine. My oncologist provided me with a nice little letter to prove that I am one of those High Risk folk. I am glad I was able to be vaccinated already, not only for my own sake, but also because I believe it is my biblical and civic duty to do so. I will be receiving my second dose early in June. 

My diarrhea is more under control now with the new medication and activated charcoal I am taking. I had come to the point where I only had about two normal days between treatments, which was not a great “quality of life.” Even eating was becoming difficult. My oncologist was kind enough to let me skip a treatment just to give my body a bit of a break and time to gain some more weight.

That brings me to last week’s excitement. Remember my ostomy incision that wouldn’t heal? Well, the wound finally closed up a few weeks ago but in the last week it decided to fill up with fluid. Last Friday, instead of having my regular chemotherapy treatment I had an ultrasound so the doctors could have a good look at my new abscess. It was only on the surface so it was in no real danger of bursting inside me and causing more problems. I was scheduled to see my surgeon a few days later to drain the abscess but it popped open on its own the next day. This was great as the pain went away as soon as the wound opened up again. I still met with the surgeon and he confirmed it’s probably caused by my fistula that is having trouble healing due to my chemotherapy drugs. It still might eventually heal on its own. To fix the fistula the surgeon would have to do a “main line incision.” The risk of that kind of surgery is not really worth the minor inconvenience of bandaging my open wound everyday. Essentially this means that my wound is not going to go away any time soon, and if it does heal over it’s likely I will get another abscess. (I think I’ll try popping it myself next time.) Anyway, I am just going to carry on with my wound as is and pray that the fistula fixes itself.

On the plus side, I got another break from chemo. On the downside, I got another break from chemo.

I have no hair anymore. Well, that’s not entirely accurate as there is a little bit left on my arms and a sprinkling left on my legs and chest. When I started treatment again back in January I shaved half my chest to make accessing my port (and the subsequent taping me up) less painful. The other side (the unshaved part) of my chest now matches perfectly. I had to shave my head again as the patchiness was starting to look ridiculous.

I’m still hoping to have another break from chemo at the end of June. Hopefully these unexpected breaks won’t change that schedule.

Please continue to pray for us.

  1. Thank God that the chemotherapy is still working and pray that it continues to do so. 
  2. Pray that my fistula heals.
  3. Pray for Leanne as she looks after everyone.
Posted on by John Clark

Our New Addition

Thank you for all your prayers. The wait is finally over! Poppy Anne Clark was born on February 26, 2021, at 4:14 am, weighing 8 lbs. 14 oz.

Poppy passed all her tests including her glucose tests. Leanne is doing pretty well. She came home around noon today (Saturday). She lost a lot of blood during the delivery so she is supposed to take it easy for a week. She is not allowed to do much around the house including moving between floors more than once per day.

I wasn’t actually able to be present for this birth due to my certain toilet dependency but I’ll never forget one particular phrase in Leanne’s text message informing me of the birth of our new daughter: “…she is so perfect and adorable”. I concur.

The girls were ecstatic to hear the news of Poppy’s arrival. Daisy spent a good portion of the day making cards for Poppy and Mommy and searching the house for baby things Poppy might need. I wasn’t sure Harry cared at all but he surprised us today when he asked to hold Poppy. He probably just wanted to see what all the fuss was about.

I can’t adequately describe how blessed I feel. I have 4 wonderful children, a loving wife and a tolerable dog. I still have cancer but I am also still alive and will not let my affliction prevent me from enjoying these wonderful blessings God has given me.

Thankfully Poppy was born on a non-chemo weekend so I was able to help send Leanne off to the hospital and watch the kids the next day. The lack of sleep was hard as I definitely need a lot of sleep when recovering from chemo but I survived (and went to bed at the same time as the children).

I am still enduring chemotherapy every other week. My next session will be on March 5. I am pretty sure the chemotherapy is working though as I have a rash and my CEA level has started dropping again. My nausea pills are still working but my new challenge is diarrhea. I used to only have diarrhea on a single day but now it is lasting for over a week. This is also one of the reasons I did not accompany my wife to the hospital. Interestingly enough, the hospital bathroom was where Poppy ended up being born, so maybe we could have made it work… I also had to shave my head again as my hair was ridiculously patchy. My head gets really cold.

Please continue to pray for us.

Please pray that Leanne will recover quickly and that she will have the strength (and enough sleep) to care for Poppy.

Please pray for our whole family as we adjust to this wonderful new addition.

Pray that God will keep me around for a long time.

Pray that the chemotherapy will continue to work and that I will be able to withstand the resulting symptoms.

And praise God for the safe arrival of Poppy!

Posted on by John Clark

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.

Posted on by John Clark

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. 
Posted on by John Clark

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.

 

Posted on by John Clark

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