Friday, August 28, 2020

Positive aspects

This is going to be a long post.  When I declined an appointment for later during the same week to discuss the results of the CT scan on Tuesday, my hope was that I’d get a call anyway.  I imagined my oncologist who is about to move to another hospital and is in her last week of caring for and about me would want to share any positive news.  It feels good to share good news.  It would also make her training at the hospital a success and let her leave on a high note.

I did get a call on Wednesday afternoon, but the tone of my oncologist’s voice didn’t promise the kind of results I had hoped for and almost expected.  She didn’t sound as excited as I would have been upon getting good news.  The images were ambiguous, she said and suggested I’d come in to discuss them and decide how to proceed.  She gave me an appointment for today.

It was with considerable trepidation that I cycled over to the hospital after lunch today.  I had spent the previous day and a half imagining what the results might be.  I couldn’t envision anything that’d make me happy.  In her office, the doctor sat in front of me with a serious face.  Your tumor has grown, she said.  I suggest we stop chemotherapy and think about alternatives.

I was stunned.  Stopping chemo is not an option for me.  How could it be?  It doesn’t hurt and is the only thing that provides hope.  She had other things in mind.  Next week, we’ll do a PET-CT scan, she said and explained her reasoning.  The scan will provide size estimates better comparable to the numbers obtained during my previous PET-CT in April.  It will also give a reading on the metabolic activity of the tumor.  This is as important as the size.  To focus on the scan, I’ll skip next week’s chemo.  With the PET-CT images, the tumor board will discuss my case and agree on a strategy.  I will talk to a doctor in a week and a half to see how things will continue.

Cycling back from the appointment, I remained in a state of stupefaction.  The situation seemed bleaker than ever.  How can the second chemotherapy program, with extended fasting as a multiplier of effectiveness, not have worked?  How can the cancer have grown despite all I’ve thrown at it?  The logic of fasting is so convincing to me.  How can it not work?  It took a long conversation with Flucha and some back and forth about what might be going on to see potential bright spots on the dark canvas the doctor had drawn.

There is no negative control.  It’s impossible to tell the effect of chemotherapy.  The tumor might have grown much more without it.  Experienced oncologists might have growth expectations of my kind of tumor, but these expectations weren’t shared with me.  For all I know, what’s growing inside me might have grown much faster without therapy.  It’s also entirely possible that there is so much variability in the behaviors of tumors among individuals that a base rate of growth is impossible to give.  Unless someone gives me very clear reasons to the contrary, I want to continue with chemo.

The state of my cancer when I began the second chemo program is unclear.  I started a month and a half after the PET-CT.  A lot might have happened during that time.  The cancers might have grown beyond the size we see now.  Or maybe they grew to their current size back then and were then stopped in their tracks.  There is not enough data to say that chemotherapy wasn’t effective.  Maybe it would take just a few more sessions to get rid of the cancer completely.

There are no new metastases, at least at the magnitude that can be identified in a CT scan.  This is great.  The PET-CT scan in April identified several new metastases.  This is still all I carry around with me.  If this holds up in the PET-CT on Tuesday, it would indeed be fantastic.  Right after the surgery at the beginning of all this, the doctors were most afraid of a recurrence of the peritoneal growth.  This would be extremely difficult to combat, they said.  Up until now, I’ve been lucky with this.

The entire picture is one of relative stasis.  Besides marginal increases in the size of some of the tumors, nothing has changed.  After the PET-CT scan in April showed new metastases in liver and lung, the surgeons were unwilling to act.  One can lose a big chunk of the liver and continue to live happily, but the surgeons didn’t want to make the cut because they were worried about growth elsewhere in the organ.  My state was deemed too dynamic for surgery.  Now the cancer looks stable and ready for the knife again.

These are all points to raise with my new doctor once he has discussed the results of the PET-CT scan at the tumor board.  I have a list of possible continuations for my therapy that I’d like to discuss as well.  My current doctor was alerting me to the great psychological support at the hospital again.  It sounded as if she thought we were out of options.  I don’t see myself there yet.  Plus, I have this blog to release my questions and worries into the world, so they don’t stay with me and weigh me down.

I should be excited about the PET-CT scan on Wednesday, but I’m even more trepidatious than before the CT scan.  The new scan might show decreased metabolic activity in the tumors or even humps of dead cells.  It’s probably more likely that it will show additional metastases elsewhere in my body that are too small to be picked up by a regular CT scan.  This is not a picture I want to carry around with me next week.  And so I’ll keep doing what I do best, forget about my disease and ignore reality.

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