Month: August 2024

Posted on by John Clark

A few updates

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.

Posted on by Leanne Clark

Home Again

Just a quick update to say that John and I are home again, after only 12 hours in the hospital. We’re still waiting on answers, as the ER doctor was unable to find a good spot to drain the fluid in John’s abdomen. Knowing that the nurse practitioner will be coming to see us next week, he sent John home with a prescription for painkillers (hydromorphone). We got home in time for me to feed the kids breakfast and then lie down on the couch for a nap. John is also catching up on his rest now in the comfort of his favourite recliner (it sure beats the hospital stretcher).

Posted on by Leanne Clark

Waiting

We’re still waiting to hear back from John’s Kitchener oncologist about the other pills he had wanted to try. Meanwhile, over the past 3 weeks we’ve been visited often by nurses, a nurse practitioner and a doctor from the Cambridge palliative care team. They’re doing everything they can to treat his symptoms in the comfort of our home.

One worrisome symptom was a rash that flared up last weekend, but 5 days on steroids made it fade away. It was probably a delayed reaction to the immunotherapy, the doctor said.
John has had a build-up of fluid in his abdomen and feet ever since he got home from the hospital. The palliative care doctor who came to our house Thursday said that they could do a paracentesis, a procedure where they use a needle to remove excess fluid from his peritoneal cavity, which she described as basically the inner bucket that holds all your guts. The fluid build-up is likely due to all the IV fluids he got in the hospital, combined with his impaired liver function from the cancer.

The hospital here in Cambridge could do the paracentesis next week, but the palliative care doctor told John that if it gets unbearable over the weekend they could do it in the emergency department instead. By the end of the day Friday, it was definitely getting unbearable, so shortly after 6:30pm we arrived at Cambridge Memorial Hospital and presented to the ER. He got moved to a room with a stretcher and a warm blanket after about an hour, and they did some blood work and hooked him up to some monitors. As of 10:45pm we are still waiting to see a doctor.
While I’m just sitting here I thought I would take this opportunity to update you all and to thank you for all the encouragement and help we have received over the past few weeks. It truly means a lot to know you are praying for us.
I know you’ll continue to pray for us as we wait.
—
“O my soul, put your hope in God,
My help, my Rock, I will praise Him.
Sing, O sing through the raging storm,
You’re still my God, my salvation.”
— chorus from Lord From Sorrows Deep I Call (Psalm 42) by Matt Papa & Matt Boswell
Posted on by John Clark

Home

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.