The land of unpredictable

Like with everything in this journey there are no “knowns.” And very few consistencies to study.

When you ask a doctor what the average shrinkage rate is, they can’t tell you. There is no such thing as “average” when the protocols change yearly (the medications, the mixtures of chemo). And even within a single year the sample size in a study is so small.  There are only 800 cases a year and only 300 like Jacob’s. And finding someone with the shape and composition of Jacob’s tumor, his age, his response to chemo etc is impossible, each body different, each tumor of a different composition. Each tumor growing in different directions.

So I walked into yesterdays scan with an n=2. I knew of 2 children close enough to Jacob’s case to ask this question to, and of course, I did. One child 4 weeks ahead of us, another 4 months ahead. A sample of size of 2 is not good science, but you take what you can get. The first child got 25% reduction in size. The second child got 95%. WHAT?! That is not a range that is R A N G E. These numbers are worlds apart.

So you know me…I was going for 96%. 

I’m competitive like that. 

And that was what I was going for. 96-100%. I was going to pray, sing, dance, whatever it took.

And I therefore just set myself up for a shitty day yesterday. 

But after a long talk with Dr. Steve Brody I’m feeling a bit better. First he responded to treatment! That is something to celebrate. And we saw a significant reduction. Another reason to celebrate.

And a factoid that I am still confused about, but just shows the illusiveness of this disease, is that the child who had 95% shrinkage still had a surgery that was 17 hours long!

Speaking of surgery, we have zero news on that front. I guess I am falling into the same frustration trap. Trying to impose my “planning” world into this new world of cancer. Imposing order in a disease that is defined by chaos. A rouge cell rapidly dividing with no logical reason or sense. Killing the very body that it needs to survive. It is the definition of insanity. There is no pattern except one of randomness.

And what does randomness bring, ANXIETY. Unpredictability. The surgery question is big. It is the difference of months of treatment and intensive care unit stays. I would LOVE to know if we have another surgery in store. My entire body just wants answers. It wants a break from the anxiety. 

But again I am only met with no relief. That is just the reality of this journey.

There is no way they can tell us for sure that he would only need one. They wouldn’t give us false hope. But the real hold up…YOUR TIME.  

See in my time there is no such thing as even a Saturday or Sunday. It is Monday everyday. But in your time its the ultimate Saturday and Sunday, its the end of August. No one is around. This includes our surgical team. There is no one to read our scans. No one around to give us even a hint. So we wait.

This never ending patience test. 

And if you have worked with me. Patience is NOT my thing. If you can’t put an “ing” on a word, I’m not into it. I like verbs. I move in verbs. I am a verb. Constantly in motion. And here I sit. I have to relinquish control. I have to wait for life to come to me. I have to believe in something bigger than myself. 

I have to believe. I have to trust. 

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