Posted on: Wed, 09/23/2020 - 12:35 By: journeyadmin
Painting for the BC Cancer Foundation Mask Photoshoot

Photo Credit: BC Cancer Foundation

Well the real world strikes. Now comes the test of my attitude.

I wasn't expecting to have to send out an addendum this fast. I was so oblivious to my CT scan that I didn't even mention it in my last note.

I had a three month scan done on September 11. I mentioned the scan to a few folks that are intimately connected to my treatment. But the usual scanxiety didn't set in. Whether the confidence came from my running or that I had noticed no changes, I'm not sure. I wasn't expecting any big change but I wasn't expecting the results that I got either.

I have a new 7mm tumour in my right lung. I'm still processing what it means.  Not nothing but not something either.  Limbo. These small nodules have resolved themselves in the past. It may be nothing but I'll have to wait to find out. I have had  glitches/blips like this before and they have resolved themselves. That is the hope again this time.

Instead of the four month scan I was hoping for, it is "check on things" in two months. I have a followup scan scheduled for mid November. And I have started the genetic testing to see if I am eligible for the next drug in the normal standard of care. The oncologist sent me for the T790M mutation blood test so that might mean osimeritinib (Tagrisso) is in my future. The blood test isn't as conclusive as a biopsy. If it is positive then it means that I have the mutation and I will be eligible for the drug. If it is negative though it just means that when the nodule is large enough to biopsy I will have to have another fine wire biopsy to sample for the mutation.

The T790M mutation is what oncologists refer to as an acquired mutation. After the initial response to my current drug - afatinib - a further mutation is exposed that creates resistance to the drug. Osimertinib doesn't suffer from this resistance. If the mutation is present, osimeritinib makes the tumour cells visible to my immune system again. And my own immune system continues to destroy the tumour. I'm at the edge of my understanding of the biochemistry and genetics with that explanation so no supplementary questions please. Though I will say that there is nothing like having your life on the line to dredge up those old lessons.

Still this development brings home the reality that this journey only ends in one place. The amount of time left seems like it got shorter again. But maybe that's because I have seen so many people dying lately. I was reading some information this morning from BC Cancer about a new early diagnosis program that is being introduced. They mentioned that in BC six people a day die from lung cancer. And that is a sobering thought.

There was an hour or two of anger and sadness. Fear was part of it too. I have spent some time feeling the emotions and acknowledging them. But at this point I don't know where this is leading.  I realized that I have to move on. I checked. The sun came up again this morning so onward with life. Not looking for distraction but I have irons in the fire and I will get busy with them, living for the moments that I have. This is life on the cancer roller coaster.

Often God knows exactly what we need to hear. Yesterday morning my Psalm was 146. In The Message it reads:


    O my soul, praise God!
All my life long I’ll praise God,
    singing songs to my God as long as I live.

Don’t put your life in the hands of experts
    who know nothing of life, of salvation life.
Mere humans don’t have what it takes;
    when they die, their projects die with them.
Instead, get help from the God of Jacob,
    put your hope in God and know real blessing!
God made sky and soil,
    sea and all the fish in it.
He always does what he says—
    he defends the wronged,
    he feeds the hungry.
God frees prisoners—
    he gives sight to the blind,
    he lifts up the fallen.
God loves good people, protects strangers,
    takes the side of orphans and widows,
    but makes short work of the wicked.

God’s in charge—always.
    Zion’s God is God for good!

Amos might have reminded us of the infidelity of man but this passage reminds us who is in charge. As a Sufi friend reminded me "Trust God, but tie your camel."

So back to advocating, running, writing, and painting.

Thanks for all the encouragement and support that this community is to me.