Author: John Clark

Posted on by John Clark

Do I really need a liver?

I received the results of my latest CT scan today.

The results were not good. The current experimental treatment I have been receiving in Toronto is not working, so I will no longer be participating in that study. The CT scan showed significant growth on my liver which, if it continues, will cause my liver to totally fail and kill me.

I will be going back to my oncologist in Cambridge to see if he has any more options for me.

I get the sense that I don’t have too much more time left.

Fascinatingly, I still don’t really have any pain. The pressure in my abdomen has increased to the occasional ache but it’s still nothing a Tylenol can’t cure.

Of course I am not giving up yet, nor will I ever, but this is certainly a significant setback.

I’ve known this day was coming for five years now. I don’t like it but there’s not a lot I can do to prevent it. In fact, I think I’m doing all I can. I don’t know of anything else to do besides pray. Please join me in doing so.

Please pray for my family, who are not thrilled with the idea of me leaving them.

Please pray that my oncologist will be able to offer me some more treatment options and that these treatment options will work.

Posted on by John Clark

August update

It’s been almost a month since I started my new treatments at Princess Margaret in Toronto. I probably should have mentioned earlier that, yes, I made it into the trial. I am officially being experimented on, or something like that.

I made it through the liver biopsy I mentioned in my last post. The doctor overseeing the procedure didn’t think it necessary to knock me out so I was wide awake while the fellow fished around inside my abdomen, extracting 10+ samples of my tumour. The doctor had to make a second hole to get enough samples. The wound was VERY unimpressive. I had conjured up a much more impressive image of the fishing holes in my head during the procedure. I think I liked my last biopsy better when they knocked me out and went down my throat.

I’ve been in Toronto countless times this past month. Even had two overnight visits so they could monitor me. My visits are gradually getting fewer though.

So far I am having basically 0 symptoms. I had a little fever on my first infusion but nothing since.

I take 4 pills every day for 2 weeks and then I get 1 week off.

Every two weeks I have an IV infusion to deliver the other part of my treatment. It only takes an hour to do the IV but it takes hours of waiting before I even get a chair in the infusion room. They give me an IV dose of Benadryl first and then finally they hold me  an hour for observation afterwards. I hate the Benadryl as it makes me VERY tired which makes it impossible to work. Princess Margaret is so big/busy that they hand you a restaurant style pager when you check in for treatment and they page you when your chair is ready.

After the first few Toronto trips I started taking the GO train from Kitchener to Union Station. From there it’s just a quick subway ride to Queen’s Park and a 1 minute walk to Princess Margaret. 

I actually am really enjoying the train. Once out of Toronto it’s a pretty scenic ride. I usually travel at less popular times of day so I usually have an entire train car almost to myself.

I wish every city had a subway system. So much better than the bus.

Leanne and I were getting so good at public trasportation in Toronto that we decided to try our skills in NYC. We caught a Broadway show while we were there too!

We won’t know if this new treatment is doing anything until my next CT scan or CEA level. My next scan is Aug 24th and I meet with my doctor a few days later.

I still have pressure in my lower abdomen from my expanded liver. I think it’s getting VERY gradually more noticeable but it’s so gradual I barely notice a change. Still no pain, yet.

Please continue to pray for us.

God has been taking care of us so wonderfully these years.

Please pray for this treatment to work.

Pray for my continued tolerance of public transit. I have a feeling my enthusiasm for the train may diminish a bit once the weather gets a little colder.

 

 

Posted on by John Clark

Toronto

I never actually made it to see any doctors regarding radiation treatment. There are too many tumours on my liver for radiation to be effective.

Next step is Princess Margaret Cancer Centre in Toronto.

I am currently in the process of being enrolled in another trial. This trial is a phase 1 trial and will include an immunotherapy drug and an ATR inhibitor. The nice part of this trial is that, once successfully enrolled, I will be given the actual drugs and not just “standard of care.” There is no randomized selection process in this study.

Leanne and I just completed our second full day trip to Toronto today. I had to visit 3 different hospitals to complete the first batch of the tests and procedures I need to join the study.

We are making the best out of our Toronto trips. We had a little bit of spare time while waiting for my CT scan appointment so we walked over to the Art Gallery of Ontario (and spent the extra $5 on annual passes…we plan to be in Toronto a lot!)

Next is a liver biopsy on June 28. We need to be at the hospital for 7:30 am so that will be fun.

If all goes well it sounds like I will start on this new trial July 5th. For the first cycle (month) I will need to stay overnight at Princess Margaret a few times so they can monitor me.

Please pray that, if it is God’s will, this trial will extend my life on earth a little longer.

Please pray that I will be able to meet all the study requirements to be enrolled in this trial.

Please pray for Leanne and me as we make frequent trips from Cambridge to Toronto over the coming months.

 

 

 

 

Posted on by John Clark

Prayer

I can’t imagine going through this cancer journey without God. Well, I guess I can and it’s terrifying. I am so thankful that I have a Heavenly Father who is taking care of me and controlling everything. God is with me, always. He will get me through my earthly adventure, however long or short it might be.

It appears that the new chemotherapy treatment is not working. My CEA level has skyrocketed and my recent CT scan shows growth on all my liver tumours.

The good news is that I may soon be done with chemotherapy.

The bad news it that I may soon be done with chemotherapy.

The next steps are to first explore radiation and radiofrequency ablation. If those treatments aren’t possible then my oncologist will be searching for another study (drug trial) for me to join. Any future studies will likely take place in Toronto.

My oncologist believes I still have a “short number of years” left to live. Honestly, Leanne and I were actually thrilled with this information. We were worried my life expectancy would be measured in months not years.

As I have said before, I will not be going down without a fight. I don’t plan to die easily.

God can do anything. He can still heal me if it is His will.

I still have some treatment options. Not great ones but there is still a little more than can be done.

Most importantly there is prayer. And we could really use a little extra prayer right now.

  • Pray that God’s will would be done.
  • Pray that God will heal me.
  • Pray for the toll these new treatments will have on my family. There may be frequent trips to Toronto required.
  • Pray for Leanne, Harry, Daisy, Magnolia and Poppy as they process the knowledge that my death may be getting closer.
  • Pray for my mother. Unsurprisingly, any setback in my health seems to upset her.
  • Pray that I’ll make good use of my remaining time on earth.

God is good.

Posted on by John Clark

O what needless pain we bear

What a Friend we have in Jesus, all our sins and griefs to bear!
What a privilege to carry everything to God in prayer!
O what peace we often forfeit, O what needless pain we bear,
All because we do not carry everything to God in prayer.

I’ve sung this hymn probably hundreds of times but last Sunday I “got it.”

I try very hard to give all my sins and griefs to God to bear. I can do very little about my situation and so it just makes sense to let the One who can do something carry everything.

I love that line. “O what peace we often forfeit, O what needless pain we bear.”

I had an endoscopic biopsy this past month in preparation for the new treatment trial. It’s actually a pretty cool procedure. They shoved a camera down my throat and started poking at my liver through my stomach to get a piece of one of my liver lesions. Maybe I am getting so used to procedures and hospitals, but I was completely at peace with it. When the doctor asked me if I had any questions I asked how they close the hole in my stomach after using it to access my liver (it closes on its own). 

This week my grief did increase a little bit as on Monday I was informed that the computer randomly decided that I would not be in one of the trial arms that receive the potentially life-lengthening trial drugs. Instead I will be part of the standard care arm. I’d be lying if I said I wasn’t disappointed. I had about a 66% chance of being in one of the trial drug arms.

Before the randomization process I thought long and hard about what it would mean if I was or was not selected for the trial. If I was selected for both drugs does that mean that it must be God’s will for me to live? But by that logic, if I received standard of care would it mean that it’s God’s will for me to die? Or maybe God’s will is to make my healing more dramatic, without the use of these fancy new drugs? Interesting thoughts but quite inconclusive.

We now know that God’s will for me was to receive the standard of care. That certainly is not a death sentence! I will still be receiving drugs that can extend my life a little longer. While not very comforting, I have to think that my part in this study may help to prove that the trial drugs do indeed help colorectal patients and eventually these drugs may become the standard of care for others who may need the extra time on earth to hear about Jesus. It’s hard to be that unselfish but I’m trying.

On the plus side, this means I will only need to be at the hospital one day every two weeks instead of two days. While they call this arm the Standard of Care arm, I will technically be getting a little bit better treatment as there is an additional drug that I wouldn’t have had easy access to without this trial (it’s complicated to explain). I am also looking forward to being rash free and possibly diarrhea free as well.

Due to switching treatments I also had a little time off from treatment which Leanne and I used to ditch the kids and take a quick trip down to Florida to visit the Kennedy Space Center and Universal Studios.

I gained about 10 pounds since I started my chemo break. I’ve also been exercising a little more than usual to prep for my Florida trip (16km of walking in Universal). I am physically and mentally ready to fight for my life.

Whenever those angry thoughts against that mean old randomizing computer enter my head, I just remember that wonderful song and pray. While it may have been easier with those extra trial drugs, this way, not dying will be potentially more dramatic and more of a challenge. And I like a good challenge especially when I can carry everything to God in prayer. 

 

 

 

Posted on by John Clark

Second Line

After four years of the same chemotherapy treatment it appears to have finally stopped working as well as it did at first. I have a CT scan booked for Monday, February 6, to confirm this suspicion. Over the last few months the amount of CEA (carcinoembryonic antigen) in my blood has continued to rise and I have been feeling increased pressure in my lower back. It is now time to begin a second-line treatment.

I mentioned a new drug trial in a previous post and am now in the process of being enrolled. A lot of these types of trials are done in Toronto but this particular one is actually taking place at my local hospital in Cambridge. The trial is specifically for second-line stage 4 colorectal patients which exactly describes my situation.

My oncologist described this trial as intensive–not that the treatment itself is harder to endure, it just involves a greater number of appointments for me. I will be undergoing a barrage of tests before and during the trial. Sounds like I will be at the hospital even more than I currently am.

There are two arms of the trial, the standard care group and the experimental group. I may or may not be selected for the experimental group, however even the standard care group still provides better treatment than the typical second-line treatment I would receive if I did not participate in the trial.

If I am selected for the experimental group it will mean spending two full days at the hospital every two weeks instead of my usual single day. Unfortunately this means my standard Friday chemotherapy day will need to change. Currently it sounds like my treatment days may be Wednesday and Thursday. If I am in the control group I will only need to spend one day at the hospital every two weeks for treatment.

Besides hopefully postponing my death a bit longer, the new drugs are not as likely to cause diarrhea or a rash. The base treatment drugs are similar to what my mother went through last year and she, unlike myself on my current regimen, did not need to rest for two days post-treatment. This makes me hopeful that I won’t need as much downtime after my treatment, especially since it will be in the middle of the week.

I am well aware that I have surpassed my initial one- to two-year life expectancy. I still get quite the surprised reactions from doctors when they learn I have been on the same treatment for four years. Whenever highly educated people are surprised I think that is a pretty clear sign that God is working. I thank God constantly that I am still alive and get to enjoy my family.

These could be my last days here on earth. I hope not, but they could be. God has seen me through four years of constant poisoning, surgeries, and countless hours on the toilet. I pray that He will give me at least another four years. I will not give up. I have four little motivations at home to keep on fighting.

Please pray for my healing, whether it be through this new treatment or preferably just a nice miracle. Whatever happens, may God’s will be done and may He be glorified.

Posted on by John Clark

Fall Update

At this stage in my cancer adventure, no news is good news.

Not that I am about to share some bad news or anything but the fact that I haven’t posted since February is a good thing.

Yes, I am still alive.

I am still having the same chemotherapy treatments every 2 weeks and, contrary to the expectations of my doctors, it still appears to be working.

Back in August I had another CT scan (previous one was January) and the results were unsurprising. There were a few new lesions on my liver which is to be expected considering my reduced dosage and the fact that I have had several skipped treatments due to weddings, holidays and COVID-19. My lungs have shown no growth which I found rather interesting.

My CEA levels still seem to be trending downwards but they are so delayed (4-6 weeks vs. 1 week in previous years) that it is harder to get a good read on the trends.

My oncologist seems to be champing at the bit to get me into a trial he is running. It sounds interesting however I won’t be allowed breaks during the trial and the trial doesn’t seem to have a finite duration.

There doesn’t currently seem to be a good reason to switch to this new treatment and given the restrictions I am not sure I want to join the trial, at least not until I have no other option.

I am still tolerating the treatments fairly well. I now seem to have a little constipation which makes my bowels’ behaviour even more exciting to predict. My rash comes and goes as does my hair but it’s my normal.

We are managing. I thank God constantly that I am alive and get to enjoy my family.

Please continue to pray for us.

  • Pray that my cancer doesn’t get any worse.
  • Pray for Leanne who is obviously very busy looking after us all.

Family Update

We took a short trip to Science North in Sudbury in early July and dragged my mother along.

We are planning to head down to Myrtle Beach to FINALLY execute my meticulously planned Myrtle Beach trip I created back in 2018 but had to cancel due to Hurricane Florence.

Poppy is starting to talk and continues to get into all sorts of delightful mischief. My nickname for her is Grumpy. She is not usually that happy.

Magnolia has been my little helper lately. “Can I help you Daddy?” Leanne says I can’t have a favourite kid but at the moment she is a notch above the other three.

Daisy’s artistic talent is growing as is her sense of humour. At Fair Havens this year she entertained us all at a family campfire with her extensive repertoire of voices which she used to sing Poor Little Bug on the Wall. I have never been prouder of her. This was a stark contrast to the previous year where she hid behind a lawn chair for a good portion of the event.

Harry is currently obsessed with geography. He is constantly creating maps, flags and learning about all the countries of the world on his own.

Leanne is back to work at the library. It’s a nice quiet little break from our wonderfully chaotic household.

I have been extremely busy with my business. I recently incorporated, hired an employee and sold another company.

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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.