Author: John Clark

We finally have updates on a few things. Since we last talked about drainage we’ll start there. I still have yet to be drained. It sounds like we’re going to talk to a specialist about getting some CT-guided drainage. My palliative care team was supposed to be getting in contact with them this week but we’re still waiting to hear back about that. Meanwhile, the painkillers seem to be working for me. I’m also on two different water pills to try to alleviate some of the fluid build-up.

We have also finally received word from my oncologist in a roundabout way. I now actually have a potential start date for a new treatment. Again, I have yet to speak directly to my oncologist which is a little disappointing but I’ve been approved for compassionate care (ie. free drugs) and they will be delivering the drugs next week. Somehow I’ve been approved to try a chemo pill without actually talking to an oncologist.

The palliative care team has been taking really good care of me. The nurses have been visiting us pretty much every other day.

There seem to be several problems we’re trying to solve at once: the build-up of fluid, the pain, and of course the cancer that has spread to my liver. But it looks like I’ve got a good care (and prayer) team behind me.

Excluding the 2 nights I was home after the initial study tests, I spent 11 nights in the hospital.

I’ve had more tests than I can even remember and some that I was sure were unnecessary based on my symptoms and was proven correct.

Anyway, basically I am never going back to Princess Margaret again. I have been removed from the study as they are worried future treatments will require similar length hospital stays.

Since I will not be on treatment, the next conversation with the Toronto oncologist was palliative care. It sounded incredibly complicated having having to deal with my local hospitals and home care. I assume they will figure it out.

My Toronto oncologist has suggested I have less than 3 months to live. (Note: This same oncologist said the same thing 9 months ago.)

All hope is not quite lost though. God can still heal me and there is still a potentially new (non-trial) drug from Japan that my Kitchener oncologist has been trying to get for me. He said it would be a good backup if the Toronto trial didn’t work. Studies have shown that this can add 3-4 months lifespan for someone with my diagnosis. I hope to speak to him ASAP.

Note: To any of my clients reading this, I am rapidly preparing everything I can to make sure my death does not impact your businesses. This is VERY important to me.

Having left the hospital, I have so fewer interruptions that I can get some work done. Four kids is nothing compared to the craziness of the hospital.

Prayer requests seem a little more difficult this time.

I think most importantly, pray for my family, to deal with my potentially soon death and to take care of me when I start needing more assistance.

I don’t think it would be a bad idea to pray for a miracle.

Friday

They could not get me a bed at Princess Margaret on Friday, so they took me to Toronto General Hospital through the secret tunnels connecting the hospitals below street level. They were pretty cool. Then I was dumped into their overcrowded ER department to wait for a bed.

Leanne and Harry arrived shortly after I did. I didn’t bring any overnight supplies, most importantly my glasses (I am blind without them) so Leanne went all the way home to get them and a few other things. She spent around 12 hours of her day travelling between Cambridge and Toronto. On the second trip she brought Harry along, because what kid doesn’t like riding trains and exploring tunnels?

Saturday

I spent almost 24 hours in the hallways of Toronto General. I had a chest x-ray, another CT scan and of course countless blood draws. Eventually a bed opened up back at Princess Margaret on Saturday afternoon, so I got to ride through the tunnels again.

It sounds like they have decided I do not need a liver stent, however the chest scan showed that apparently I have pneumonia. I am continuing to receive antibiotics which should help treat the infection in my lungs.

I wouldn’t mind having a quieter roommate, however once you’ve spent the night sleeping in the hallway of an emergency department, you would be surprised what you can tolerate.

Thanks for continuing to pray for me during this ordeal. I don’t know yet when I will get to come home, but it could be Tuesday at earliest.

Tuesday/Wednesday

I did have a CT scan Tuesday which did not show any internal bleeding. The rest of the night went ok. I had another fever though.

Since the doctors ruled out any serious issues they decided they couldn’t keep me any longer and sent me home. But of course they wanted me back Friday and Monday.

Thursday

I finally had some time to get some work done without constant interruptions. I had two fevers which I treated with Tylenol as instructed.

Friday

I arrived at the blood lab at 10:40am. Then I went upstairs at 11:30am for my check-in with the nurse.

They did not like my bloodwork.

My liver enzyme levels keep increasing so they think there could be a blockage in one of my liver ducts.

So I don’t get to go home.

Sounds like I will be stuck here until Tuesday or longer.

I feel fine but apparently I am pretty busted up inside.

To fix the possible duct blockage they will first just try antibiotics. If that doesn’t work they will try to put in a stent.

Please pray for me and my family. So far this trial has been one surprise after another.

Day 1 of my new drug trial: Leanne and I left home Monday morning at 5:10, caught the express train at 6:05, and arrived at Princess Margaret by 7:30 for blood and urine samples. Then we waited around for my 10:00 appointment.

I checked in at the appointed time and got my room right away. The nurse took some vitals but my heart rate was too high. They gave me IV fluids to help lower my heart rate which delayed treatment several hours.

All day it was nothing but answering the same questions asked by nurses, doctors, and various other support people. Eventually they decided to give me the treatment at 3:32pm. I felt no effect from the drugs. I then was subjected to countless more blood draws and ECGs.

They eventually let me go to sleep but kept waking me up every hour for vitals which showed I had a slight fever. I still felt fine.

I made it through Monday night and was awakened by the head of oncology doing my vitals. I did pass but the nurse still repeated them a few minutes later. The oncology trial head was the first to let me know that now my hemoglobin was too low. It was as if I had lost 3 bags of blood and no one knows where it went.

A few hours later, my day nurse arrived and confirmed that I had an ultrasound appointment for 10:30am. No big deal but they wouldn’t let me eat or drink prior. They wanted to look for any parts in my liver and tumours that may be connected to something else that could be affecting my liver enzyme count.

I passed the ultrasound. My liver is ok (except, you know, the cancer). I eventually got food, including ice cream for dessert.

The entire hemoglobin team has been discussing my case and they have even reached out to the drug manufacturer to see if anyone else has had the same symptoms. The latest doctor mentioned possibly doing a CT scan.

I was supposed to go home today (Tuesday) but it sounds like I am stuck here until they solve the mystery of the missing blood.

Thank you for praying! My weekend of IV fluids seems to have fixed my pancreas enzyme levels. I went from levels that were 10X normal on Thursday to normal by Monday morning. It sounds like I will be getting into the trial with a possible start date of next week, however, I am still waiting for an official confirmation.

I am still struggling with appetite but I don’t seem to be losing any more weight. I think it’s been almost 2 weeks now where I have been holding steady in the mid 130’s.

Please keep praying.

Leanne and I eventually made it to Princess Margaret yesterday…on separate trains. (We will have to monitor the frequency of 1pm Blue Jays games in the future as they tend to fill up both parking lots at Aldershot GO station.) The study nurse went through the consent form, asked me a ton of health questions, and proceeded to have her colleagues administer a few more tests. We then raced across the street to Toronto General Hospital for my CT scan.

About an hour later, I received a phone call from the study oncologist while on the train headed home (with my wife this time). She said that my pancreas enzyme levels were very, very high and would likely prevent me from participating in the study. She and my oncologist in Kitchener have no idea why the levels are so high, especially when I am not having the typical related symptoms. To try and reduce the levels of these enzymes, I am having 3 days of IV fluids at home. They used my port which means my arms are free which is really great. I will get a blood test on Monday locally and find out the results on Tuesday. If the levels do not show improvement I will not be part of the study.

Again, please pray for God’s will regarding this study. On the one hand, considering how new and small it is, the side effect risks could be high and unknown. On the other hand, maybe it does have high potential to do some good. God knows what is best for me!

Regardless of the trial, please pray that my pancreas enzyme levels go down. I’ve been told to go to the ER if I start having abdominal pain and vomiting. I haven’t had time to look it up yet but I don’t think there is anything good about pancreatitis.

 

Here is a nice little song from Weird Al in case you want to learn more about pancreases.

 

This morning, Leanne and I are off to Toronto again to have some tests done and paperwork signed for a new Phase 1 trial in which I may be eligible to participate.

This was a bit unexpected. At my last meeting with my oncologist in June, he told me he wants to take me off my current treatment and try something else. He mentioned contacting Princess Margaret Cancer Centre again as one of a few options he would pursue for me. A few days later I was meeting with the trial doctors at Princess Margaret discussing this trial.

The trial involves an immunotherapy drug given via IV once every 3 weeks. That will be a welcome change from my last Phase 1 trial at Princess Margaret and all my other treatments which have been once every 2 weeks. The big catch with this trial is the risk of deadly diarrhea; one person in the trial died from complications related to diarrhea. Apparently some people on the trial have no diarrhea at all, so I am going to be hopeful that I am one of those very blessed individuals. The “deadly diarrhea” did have me pause a bit before jumping ahead but I am getting very close to exhausting my treatment options. And I know I’ll be in good hands at Princess Margaret even if unwelcome side effects occur.

I keep mentioning my lack of appetite. Sadly, that issue is getting worse. I keep having setback after setback. I weigh around 135 lbs now. For context I am 6’1″. I keep thinking I am making progress but after what I think has been a good consistent run of eating, the scale disappoints me. I am really hoping once my last round of chemotherapy has finally left my system I will regain some of my appetite. 

Please pray for us as Leanne and I travel back and forth to Toronto. We take the train so it is at least quite a relaxing journey. Pray for God’s will regarding the trial at Princess Margaret, and that my acceptance in this trial will not be contingent on my weight. As Leanne and I continue struggling to find foods I will eat, pray that I will be able to gain some weight.

 

P.S. Thanks for continuing to pray for us and taking the time to send us encouraging notes now and then. Occasionally Leanne and I hear from people who are having trouble contacting us when replying to the blog email, so here are our direct email addresses:

 

• • theclarks@jtclark.ca (This goes to both of us)
  • john@jtclark.ca
  • leanne@jtclark.ca

Radiation in London is done now and I am back on chemo at Grand River in Kitchener. We won’t really know until my next CT scan if the radiation treatment was successful or not. Thankfully I didn’t experience many side effects, just fatigue and some very minor aches around the radiation target area.

I’m still having some a lot of trouble with my appetite. Basically I have no desire to eat anything. I get hungry but have no desire to eat. I rate foods as tolerable or intolerable. My tolerable list is extremely short and changes constantly. I haven’t enjoyed eating anything in quite awhile now. Leanne and I are working really hard to solve this problem but I am not gaining much weight. We have some medical options we are pursuing as well. I promised my oncologist I will be 150 lbs by our next appointment near the end of June but I am becoming doubtful I will reach that goal as I am in the low 140s now.

I really do miss eating. On our trip to California I was eating kids meals. 

My CEA level is still slowly climbing, which is not surprising since nothing has really changed to affect it.  Hopefully next month’s level will show some signs of decline or stability as that test would include my radiation treatments.

My oncologist prescribed me some pills to help with fatigue and after a bit of experimentation with the dosage I think it is working. 

Prayer Requests

I need to get my weight and appetite under control.

Staying alive longer would be nice.

I am very thankful I was able to go on such a great trip with my mother and family. I had such a good time with the kids, especially my sweet little Magnolia. I couldn’t keep up with Leanne and the older kids but Magnolia and I seemed to have a similar amount of stamina.

My latest CT scan wasn’t too surprising. There were again signs of continued tumour growth in my liver and lungs and it looks like there is a new nodule on my pancreas.

The current chemotherapy may still be helping to slow down the growth so it makes sense to continue on this treatment at least for a few more cycles.

To help combat my biggest liver tumour I will be having 5 days of radiation treatment in London starting May 10. Hopefully this will reduce the size of my biggest liver tumour which may also help my current chemotherapy to be able to attack this tumour better as well.

Prayer requests:

• Please pray that the radiation will help and for Leanne as she takes me to London for each of the treatments.
• My oncologist has given me a new prescription to help with fatigue. Please pray that it works.
• We will be leaving for a vacation with most of the kids this week on May 1. Please pray for our safety and that my health won’t cause any significant challenges or expenses on our trip.