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An update I've been dragging my feet to share

I’ll be honest, I’ve been dragging my feet on this update.

Dreading it, even.

Maybe because I’m still trying to process what they told me at MSK on Monday: “We’ve seen no change on your CT scan since April.”

Really? In spite of five rounds of chemo, including two that were delivered by a pump that was surgically implanted in me last March?

“Yes. In fact, when we look through the historical scans, it appears you really haven’t had much change since December.”

Wow. So that’s no change after EIGHT ROUNDS OF CHEMO.

When it comes to cancer treatment, no progression should be seen as good news. It means the chemo is holding things at bay, that the cancer hasn’t mutated enough to allow it to grow again.

But it’s hard to feel that way, especially since my initial response to it was so unexpectedly good, especially since we’ve seen CEA decline month after month, especially since I’ve felt so great lately. I was expecting to go into that office and have them say, “Wow, your liver looks amazing! Let’s get you scheduled for surgery, we can take care of it all in one procedure and then you will be NED (no evidence of disease) and we can schedule you for six months of mop-up chemo and you’ll be back to your normal life!”

Instead the surgeon is telling me that given this plateau, we need to schedule a first surgery ‪on July 17th‬, and a second one three months later, in October. He explains that the mortality rate of the two surgeries is less than 1%, whereas trying to do it all at once brings the risk up to 5%. I nod, dumbly, trying not to get caught up in the phrase “mortality rate.”

I try to stay focused on the important thing: I’m resectable, when nobody thought I would ever get to that point.

Per says it’s a little like winning big in Vegas on one trip, then coming back for a second trip only to break even. It really doesn’t feel good—but you’re still way ahead.

Still, the cancer math is tough to process: surgery in a month, then resumed chemo and another surgery three months later, then six months of mop-up chemo—that adds to ten more months in this suspended reality. It already feels like it’s been forever, and we aren’t even half done. My chemo rash has exploded and now covers about 30% of my body, my GI issues are showing up like clockwork each cycle, I have to superglue together the cracks in my fingers, I want to eat healthy but keep craving McDonald’s cheeseburgers, and I’m itching to get back to my “real” job… Can I really do this for another almost year?

A hard lesson for me: you can feel good spiritually and emotionally—but it turns out that doesn’t give you a pass when it comes to living in your human body and yearning for normalcy and life.

Another hard lesson: my journey may have felt star-touched, but the reality is that I’m just a regular person, having a normal reaction to chemotherapy’s diminishing impact. No stage four cancer journey is a straight line, and it’s sobering to realize I’m no exception.

I know what I have to do. I need to look at this and tell myself: whatever I was supposed to learn from this experience, I wouldn’t have learned if I had sailed right through. I need to find the lesson in it. I need to find a way to bounce.

But more honesty: I’m not quite there yet.

So please send some extra stars for me: stars for healing, stars for insight, stars for strength and for buoyancy. Right now I need them all.

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