In my last post I hadn't
looked at my MRI results yet and was scared as hell about what they might show.
On top of that the appointment with my radiation oncologist was closing in and
I felt like I was getting cornered. That feeling was horrible. Basically, this
is where we left off last time … and I surely can't just leave you hanging
there...
Well, the follow-up is that eventually—after a
day or two—I finally looked at those MRI scans. And then I kept looking at them
for the next two weeks, right up until I met with my doctor again. I must admit,
those two weeks were not fun.
First, I have to mention that at the time I
finally looked at the scans, I had already received a written radiologist’s
opinion. And it was saying that the mass hadn’t changed much, but it looked
like it had grown by one millimeter in width compared to my January MRI. I got
chills reading this. I was seeing a dark scenario unfolding before my eyes—just
written in nicer, less horrible sounding words than the ones in my head. When I
boiled it down to the bare essence, it was basically telling me: “You’re failing!” and “Your efforts don’t matter!”. It was a
hard punch to the gut and a very heavy pill to swallow.
Of course, me being me, I didn't accept defeat
so quickly—instead I went into full red-alert, deep-analysing mode. I locked
myself to the computer for days, comparing all four MRIs I had so far—two with
contrast dye, two without—some with better image quality, others with better
protocols. Staring at those big chunky pixels, each about half a millimeter in
size, toggling aliasing on and off like crazy, taking measurements left and
right, and fighting for every tenth of a millimeter. It was madness!
I was thinking about angles between slices,
voxels thickness, the influence of so called bleeding of signal from outside the
voxels, etc. Basically, I was speedrunning how MRIs work internally and how to
analyze MRI images. I even bootstrapped some Python scripts and MATLAB filters to
help me analyze those DICOM files containing MRI series and images. I programmed
my own filter to generate and view my nemesis in MIP (Maximum Intensity
Projection) view. All in the hope of finding proof that the radiologist might have
misjudge the size when measuring this mass. Well, sometimes I thought I had found
solid proof the mass was stagnating, and at other times it really looked a
little bigger.
After two weeks of manual measuring, manual
segmentation, smoothing results, averaging this and that, etc... I no longer
knew what was real and what wasn’t.
All I was doing was measuring a blurry shape,
where one pixel on one side and one pixel on the other could mean the
difference between me controlling my own body or me losing against it. I was
basically trying to measure something more precisely than the data quality (and
my knowledge) would ever allow. And to make things even worse, all those MRI studies
were taken on different MRI machines, with slightly different protocols and
different voxel sizes—so I was comparing things that probably shouldn't be
comparable ... or maybe they should be ... I really don't know any more.
At the end, after two weeks of exhausting
myself in front of my computer screen, I hadn't been able to decide if this
thing was really growing or not—without any real conclusions even on the
evening before my scheduled appointment with my doctor. What a shitty situation
to be in!
Well, that sleepless night, my brain settled on
these thoughts: If we eradiate a holy shit out of this tumor, then in the end
there are three possible outcomes. First—we shrink it. All good here. Second—it
continues growing like nothing ever happened, or, even if very unlikely, it turns
malignant. And lastly—it stops growing and just settles in there for good.
(Well, there are some percentages involved how likely each scenario is to
happen, but we can deal with those some other time—for me, it was really hard
to take probabilities into account at this point because I already felt like
small probabilities just straight-up loved me.) These were the outcomes I saw
at the time if I were to undergo radiological treatment. Summary—good, still
good (if we suppress those thoughts about the very unlikely but possible malignant
transformation) and really bad.
Then I started to combine those with possibilities
what the real current state of the tumor could be. All that we (well, at least
I) knew for sure was that this thing is in there and has not shrunk yet. So
there are only two options left—the tumor is either just sitting there doing
nothing or it’s growing very slowly. The last option is bad and would require
some “invasive”[1] radiological actions to be made.
But what if it doesn’t grow and is just chillin’
in there? Well, in my mind, this option was still more on the positive side.
But if, in this case, we shine those radiation beams through my skull anyway,
we’d probably be doing it for no good reason, right? And because radiation by
itself is not exactly, let’s say, healthy—especially looking in the long-term
game—we would be doing a negative thing for no real positive gain. Actually,
because this thing in my head is squeezing itself among healthy Schwann and
neuron cells, we’d end up destroying a bunch of those too. And that seemed to me like quite a bad thing.
So, that’s what my sleepless night looked like
when I was doing my SWOT analysis—trying to weigh the facts, the uncertainties,
and all those unknown variables I didn’t have data for. In the end, I came to
the conclusion that we (or at least I) didn’t have enough solid information
about what this thing in my head is actually doing and how it is behaving.
There was some data, and based on that the radiologist’s opinion was that it
could be slowly growing. But staring at those big chunky pixels, I just couldn’t
reach the same conclusion and be 100 percent sure at the same time. There were
still voices in my head doubting and saying things like: “One wrongly measured pixel changes everything.”, “Where is the actual edge on this blurry scan?
This damn thing spans over three pixels!”, “The 15° difference in head tilt between studies could give us at least
a 1mm measurement error.”, “Why can’t
I even get consistent measurements with other structures in my head?”, “Could different brands of contrast dye affect
the images?”, “And why did a
different radiologist’s opinion from just a month and a half earlier state that
the size hadn’t changed?”, etc.
…you probably get the point—there was still an
endless line of unanswered questions and ununderstood data in my head. As I often
remind myself, “One’s decision can only
be as good as the data behind it.” And my data was poor, full of holes and
doubts everywhere. So I settled on the conclusion that there wasn’t enough
solid information to go in all guns blazing! Long story short, that’s what I
stood up for in my meeting with the doctor the next day. Thankfully, she understood
my concerns and didn’t pressure me toward immediate radiation treatment, even
though her opinion was that radiation would probably be a recommended choice. At
least, that’s how I understood it.
The
feelings when leaving the doctor’s office were very mixed for me. On the one
hand, I was glad I hadn’t locked myself into immediate radiation without more
solid data. On the other hand, I was still concerned about many things—what if
the symptoms get worse, did I made the right choice, there will be more of
those unpleasant contrast-dye MRIs, did I just prolonged the inevitable, and so
on. Overall, though, I felt somewhat relieved.
The days
and weeks that followed were quite “interesting”.
Although my symptoms were super manageable, the other things were … let’s just
say, not quite in order. My motivation to stick to my “life protocol” (exercising, diet, so-called therapeutic activities,
etc.) fluctuated a lot and got pretty low on some days. There was that heavy
feeling that maybe what I’m doing doesn’t actually work, and I’m just
prolonging the inevitable for a few months. I even struggled with motivation to
do anything productive, or even to sit down and write this update post. But I
think my focus is slowly improving, and I’m getting back on course again.
So that’s it for now. Thanks for sticking with me through this messy update.
[1] Radiological treatment is actually not
considered an invasive procedure in medical circles, but for me, it still feels
scary.