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.

First treatment

One week and a day after his chemotherapy treatment, John is finally starting to feel better. Due to the diarrhea, nausea, and loss of appetite caused by the chemo, he has lost 23 lbs. this week. The doctor sent him to the ER Thursday night to get rehydrated with some IV fluids. He was able to come home the same night and is gradually starting to eat more and actually keep it down.

Here are some specific requests as you continue to pray for us:

  • that John would be able to eat and regain his strength
  • that we would find the right balance of medications and nutrition to alleviate his side effects (diarrhea, nausea, loss of appetite, fatigue)
  • that the cancer cells in his body would continue to be destroyed

It’s been an exhausting week for me too, so thank you to everyone who has sent messages of encouragement, hymns and prayers. I haven’t had time to respond to all of you but listening to some of the songs you’ve shared has been keeping me grounded. Something our pastor, Gary McNitt, said last Sunday has stuck with me too: “A soul that is stabilized by God can overcome anything.”

John’s next chemo day is September 24. Hopefully this week he can get back to working at his desk and playing Mario Kart with the kids. (It might sound silly but that’s what they’ve been missing the most!) And hopefully the next treatment won’t be quite so brutal.

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.

 

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.

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!

January update

Happy New Year, everyone! May you find many reasons for joy and hope this year.

After about a month off, John is back on chemo again. His first treatment was on Friday, January 8. He lost his appetite (and 10 lbs.) over the weekend, but so far the other side effects haven’t kicked in yet. Basically he just slept a lot.

I gave him his first Grastofil injection today to help keep his white blood cell count up. Six more to go before the next chemo day on the 22nd. Being back on Grastofil means he can probably proceed with treatment uninterrupted until he and the doctor decide it’s time to take a break again. He’ll have another CT scan in about three months to re-evaluate.

Please continue to pray that the chemo will be effective, that God will give the doctors wisdom in their decision making, and that I will have the strength to take care of our family on the days when John is not feeling the best.

Keep praying for the baby too. My last ultrasound the week after Christmas showed she was growing normally, kicking and moving around, and she had a normal heartbeat, so we are very thankful for that. I found out earlier in December that I have gestational diabetes for the first time in my life, so I’ve had to monitor my blood glucose daily and follow a special diet, which so far has helped keep my numbers on target without the need for insulin shots — another thing I’m thankful for.

I’ll close with a little story to brighten your day. Sometimes I use Bible verses for the kids to practice their handwriting, and I stuck a copy of Philippians 4:13 on our fridge back when Harry was memorizing it. It’s been there for months. The other morning, he saw that I was tired and I must have seemed frazzled because he pointed to it and said, “Mom, just remember, whenever you feel weak, read this verse.” I just thought I’d share these words of wisdom from an 8-year-old for anyone else who could use the reminder today.

“I have learned the secret of living in every situation… I can do everything through Christ, who gives me strength.” Philippians‬ ‭4:12-13‬ ‭NLT‬‬

“When peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot Thou hast taught me to say, ‘It is well, it is well with my soul.’” Horatio G. Spafford

Uncertainty and Emmanuel

John asked me to write a brief update to let you all know how he’s doing. He feels great and has been able to work lots of hours lately. The reason for that, however, is that his most recent blood test showed he did not have enough neutrophils to go ahead with his last chemo treatment on November 26.

The oncologist decided to give him a short break from chemo to allow his bone marrow time to make more neutrophils (bacteria-attacking white blood cells). This will also give his surgical wound more time to heal. John is going back to show it to the surgeon on Monday, then he sees the oncologist again on Wednesday. He has another chemo treatment scheduled for Thursday, December 10, but that will be dependent on the status of his wound and whether he has enough neutrophils. If not they might postpone treatment till January and he will likely need Grastofil injections again.

Thank you for continuing to pray for our family. I realize that we are all living with some degree of uncertainty right now and facing the prospect of a different kind of Christmas than usual, so I want to share something that encouraged me this week.

Our church had sent us an Advent box with activities to do at home with the kids. Last week the theme was Hope, and one of the activities was to have them draw a picture of themselves in a scary situation (e.g. alone in a dark bedroom with a monster’s eyes peeking under the closet door). Then we talked about how Jesus is always with us and how the name Emmanuel, which we sing in a familiar Christmas carol, actually means “God with us.” Finally, the kids were asked to add one more thing to their drawing: Jesus standing right there beside them. To me, that was such a comforting reminder! Whatever our future holds, Jesus will be right there with us. Emmanuel.

“So do not be afraid. I am with you. Do not be terrified. I am your God. I will make you strong and help you. I will hold you safe in my hands. I always do what is right.”

‭‭Isaiah‬ ‭41:10‬ ‭NIRV‬‬

Magnolia, Harry and Daisy
Magnolia, Harry and Daisy

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.

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. 

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!