"New Normal"

Posted on: Sun, 10/28/2018 - 16:48 By: akpratt
slow rolling ocean

So six weeks later it is time to write again. My cousin sent me a note over the weekend to remind me that I was still being prayed for. I took it as a hint to get writing.

He also reflected on his morning reading in "The Message" Mark 16

19-20 Then the Master Jesus, after briefing them, was taken up to heaven, and he sat down beside God in the place of honor. And the disciples went everywhere preaching, the Master working right with them, validating the Message with indisputable evidence.

That phrase "indisputable evidence" caught his attention and it caught mine too. God is with us working, making sure that those around us know that the good news is real.

 

Around the 1st of October I had my first week in five months that had no medical appointments. It felt totally strange. A phrase that I had heard repeatedly since I received my cancer diagnosis - new normal - became real. I had nothing to do. No work to go to. A few web projects bubbling and some things around the house that needed doing. But in reality my life has changed. And depression set in. I read and moped, struggled with getting out of bed, with making meals, even eating. I touched base with some old friends and slowly I realized that this was an opportunity and I began to rethink what I was doing and how I was doing it.

I met with a new radiation oncologist two weeks ago. I had been referred to him because of his specialty in breast radiation. When the appointment was given to me, I took it as a sign that I was going to be getting more radiation. I prepared myself for that news, so you can imagine my surprise after a long and thorough discussion of my case to this point including the lung cancer, he recommended that I not receive radiation for my lymph nodes. 

My greatest fear had been that radiation would be deemed necessary. Because it would be happening on my right side, I thought it would limit my options later for further treatment of the tumor in my lung . There are "constraints" in how much radiation certain structures can receive. The doctor had enough room in what I had had done for the lung tumour and what would normally prescribed to do lymph node radiation. But when it finished there would be no room left for future treatment in that area. The oncologist's conclusion was similar to mine. No radiation. This decision will leave options in the future. And interestingly enough the benefit was relatively miniscule (about a 5% increase in life expectancy at 10 years.) He took the analysis with his decision to the "Tumour Board" - a group of doctors who confer on difficult cases. They agreed with his choice. And mine.

On the breast surgery front, my scars are healing well. It kind of feels like someone held ice on them for a while - sore and numb but not really painful.  Meeting with my physiotherapist gave me a clean bill of health. Though as professionals like to do, he referred to my oncologist for permission to resume exercising because of the lung cancer and his unfamiliarity with it. He did give me the go ahead to start my lawn mower. That is really the only thing that I haven't been doing. And I after I started it I let my oldest son, Sandy, mow the grass. I wasn't idle though and began to prepare the dahlias for winter. 

 

Sandy came out for the week - surprising me with a phone conversation that kind of went like this:

 

"Hi Dad, how are you?"

"I'm doing okay. How about you? Sounds like you are driving?"

And I'm thinking he must have his head out of the drill shack and is driving back to Edmonton.

"Yup."

"So are you headed back to Edmonton?"

"Nope coming to Vancouver."

"Oh new job out here?"

"Nope coming to visit you"

"A heads up would be nice but that is fantastic." as the tears stream down my face.

 

We are kind of a spontaneous family and while I knew that several months ago he had been thinking about coming out it still came as a complete surprise. He helped with the yard cleanup, something that had been nagging at me for awhile. Then we cleaned up some of the old things around the house with a run to Goodwill and another run to RDS in Ferndale with trash.

Back to my cancer situation. At my next meeting with my oncologist, Dr. Johal, he mentioned that the Tumour Board had also commented that I was getting great value out of him as an oncologist. It took me a second to work it out. He is a lung and breast cancer specialist. In normal circumstances I would be seeing two oncologists for the two different diseases as I had just had to do with the radiation oncologists. Still, I am the first patient that he has had with both diseases.

On a more serious note he started me on my five years of Tamoxifen. Much rumoured and discussed in breast cancer circles for its side effects, I was a little concerned about it. My brother reported his chemobrain fog clearly lifted when he stopped taking it. Still I felt it was important to follow the doctor's recommendations and have begun. The other common side effect is "hot flashes." Not familiar to most guys but very familiar to women. After just a week of taking the medication, I was standing in the choir loft. I was absolutely dripping wet. My sweater came off, the shirt was loosened and if I could have done more I would have. My first hot flash passed relatively quickly. As I chuckled about it , several of the altos realized what was going on and asked if I understood them a little bit better now.

I'm now on infusion #4 of the Durvalumab (Imfinzi). Other than tiredness for a couple of days after the treatment I haven't noticed a lot of side effects. The numbers however tell a different story. My TSH (thyroid stimulating hormone) levels are non-exisistent so my thyroid is running amok, producing way too much thyroid hormone. I received an urgent referral to an endocrinologist who after running through a list of symptoms felt that I was doing pretty good and she will simply continue to monitor the situation. She expects that when the treatment ends my levels will come back to normal. In the meantime there is a bit of a feedback loop and the low levels should rise again and will bring the thyroid levels back to more normal values. I have noticed a bit of weight loss after meeting with her and am ramping up the calories when I remember to in my eating. 

For the first time in five months I worked as a First Aid Attendant a few weeks ago. My boss asked if I was up to it and as it was a relatively quiet event, I agreed to it. It felt good to pull out the uniform and work boots and put them on. The day went longer than expected but still it felt good to be doing something again. We only had one call and though it resulted in an ambulance being called it wasn't very strenuous. I realized though that I was going to need reorient myself with responding to an incident and bringing my usual calm to a difficult situation.

I don't know how to say this other than baldly. Yvette has been diagnosed with metastatic pancreatic cancer. In the course of preparing for a routine colonoscopy, they found a suspicious mass on her liver. She was briefly hospitalized to complete the diagnosis and it was confirmed with us before she was discharged. On Oct 8 we met with her oncologist. He ordered a portcath be installed and that a further chest CT scan be performed to check for metastasis to the lung. The CT scan discovered a tumour thrombus (blood clot) extending from her hepatic veins to the right atrium of her heart in the inferior vena cava. The port was changed to a PICC line to stay away from the right side of her heart and she had it installed on Thursday of last week. We expect chemo will begin on Monday October 29th when she has approval from her insurance program. Other than the prognosis is grim, we don't know what exactly to expect and are taking each day one at a time.

Our assigned Psalm this morning used the analogy of a sailing ship in a storm to illustrate God's control of the universe. Psalm 107 ends on this note:

24 So thank God for his marvelous love,
    for his miracle mercy to the children he loves.
Lift high your praises when the people assemble,
    shout Hallelujah when the elders meet!

Our church will be holding a prayer service after our regular service on Sunday. I have been going here almost twenty years and don't remember a similar service. While Yvette and I are not the focus of the service, our situation was certainly the catalyst. Join us as we pray.