Set back

I felt the world and science were on our side. 

Even the stats were on our side. I am supposed to just suck it up… it’s not like we have a choice. I’m supposed to just accept the news today. Or at least that is what I’m told. They are probably right. What other option is there? Crying and laying in a dark room won’t change the outcome. 

We were told that we need to go off protocol. 

Jacob will need more chemo. This was devastating. I was ready for No NED, even though the statistics seemed on our side. I was ready for a bit of cancer left, but I was hopeful that we would move on in the protocol with immunotherapy and radiation.  I saw the light. Just 6 more months and NO MORE POISON. But that didn’t happen.

And guess what Robert Frost, this wasn’t even a path that was known. Even if I attempted to count them, I would have never seen this path. It was hidden! Never one of the paths that I heard of. This one had no sign. No marker. You forgot to mention those. The paths that just show up! What about those paths? And you forgot the forks with NO choices. We have zero choices.

I thought that the paths could only go up, but this path makes the rest look like a pleasure cruise.

Chemo was terrible, but now we get to add immunotherapy at the SAME TIME. He will do both next week. Monday-Friday chemo and on Tuesday and Thursday add immunotherapy.

I was already nervous about immunotherapy. The stories are horrific. I’ve heard the screams. They promise me that he won’t remember a lot of it as they will give him opioids for the pain that will make him loopy. Oh great, Narcotics again. 

How could this be worse? Oh I know. Let’s add chemo. 

I’m different than Steve who calls this a “set back.” The set back being a small mass found in the CT and the bones not clear. I should be celebrating. Aren’t we lucky that they found the small mass and the bone scan is substantially better (like way better), but I don’t feel any sort of lucky.

And a set “back” is nothing I can handle. I only can accept forward motion. Only forward. 

Going to sleep now. My favorite part of the day. 10 hours of forgetting. As we wake up to again starve my child who will have his bone marrow sampled and another long day at the hospital. And this time the test isn’t until 10 am. He can’t eat until 10 am. Great. Try explaining that to a 5-year-old. 

But I guess I should be thankful. At least it’s not Tuesday, the first day of immunotherapy AND poison. 

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5 Comments

  1. Heartbroken . Love you

    Morgan Shara Founder and President

    MASBISJOUX MASbisjoux.com @masbisjoux @mascreativeconsulting

    Spelling errors and typos courtesy of the Apple Corp and iPhone

    naMASte

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