Tag: cea

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

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

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

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!