Diagnosis: Afterparty

Two hundred and twenty two days.

That’s the time between hearing “you have cancer” and “you don’t have cancer anymore.” What a whiplash of a journey and I’m honestly still in shock that it’s almost over.

During those 222 days, I read a lot of stories of other people with stage 4 colon cancer, and to say I’m one of the lucky ones is quite the understatement. Krang inhabiting the left side of my colon started me off with a significantly better prognosis than if he had decided to grow on the right side. I only had 8 of the 12 prescribed rounds of colon cancer chemotherapy; most people go through all 12. Some people go through all 12 without it working and have to move to second or third line of defense. Some people are dealing with it years or even decades later. Some people are on chemo for life. Some people have such aggressive mutations, they don’t even get that privilege.

Some people will never be healthy enough for a liver resection, let alone a complicated two-stage surgery like ALPPS. Only a couple hundred people a year worldwide undergo this high-risk surgery. Some people never get to NED (no evidence of disease) and get to set up a surveilance schedule.

Some people never live long enough to ring the bell.

And, as it turns out, I spoke too soon about not ringing mine. The day after my last post, I had my bi-weekly HAI pump refill, which happens in the chemo infusion center, which is where the bell lives. Apparently the rules on the bell are kinda relaxed, you can walk right in and simply ask to ring it. I told my nurse that I was declared cancer free the day before, and asked about ringing it after we filled the pump.

She simply replied, “Okay!”

It wasn’t as ceremonious as I pictured, but I did read a little poem before ringing it. Of course I wore a Ninja Turtle shirt to commemorate the end of Krang. I’ll be going to the chemo infusion center every 2 weeks for the next 2 years to get the pump filled up with fluids. And unless something recurs on my liver in that time frame and I need the pump for actual chemo, I can probably ring the bell again in 2 years to celebrate the end of the pump, before I get it removed.

And yesterday, another tether to all of this finally came off: my surgical drain.

After living with it for seven weeks, and living on a 10g-fat-per-day diet for six of them, it is FINALLY gone. In the last 24 hours, I think I’ve already eaten my weight in avocados.

With the drain gone, I’m starting to remember all the little things about being me that I had to put on pause.

I can get my nails done again. A side effect of the chemo that I luckily didn’t experience was brown spots under my nail beds, so looking out for that was paramount. Now I can go back to thinking about much more important matters, like what chrome or cat eye I want to do at the salon next.

I can dye my hair again, because my hair is no longer fragile from the chemo and I haven’t lost a strand in ages. Speaking of strong hair, I can start thinking about an end date for the Minoxidil I’ve been taking to keep it that way. The hairs that did fall out have returned and are about half an inch long. My hair is still generally thin, but my scalp looks normal again. And Minoxidil doesn’t discriminate, so I’m also looking forward to the end of adventures in dermaplaning.

I changed my Peloton leaderboard hashtag from #FightingCancer to #ColonCancerSurvivor.

My period has returned, so really the only unfair thing to look forward to is going through menopause a second time.

I’m really beginning to settle into the “after.” Although it’s not all fun and games quite yet.

Aside from quarterly surveillance and liver pump refills every two weeks for the next two years, I’ve been experiencing some late-stage neuropathy from chemo. Not just the cold-sensitivity neuropathy, but the REAL kind. Apparently oxaliplatin neuropathy can “coast,” meaning it can worsen or even show up after treatment has ended. Apparently chemo wasn’t quite finished with me just because I was finished with chemo. Luckily, it’s not incapacitating, and hopefully it fades over the next couple of months.

There’s also one more new addition to my surveillance routine: Signatera testing. It’s basically bloodwork, but they create a personalized blood test that will look for microscopic traces of my cancer’s DNA floating around in my bloodstream. So in addition to scans, we’ll have another way of keeping an eye out for anything trying to make a comeback.

Which also led me to learn something deeply odd: a little slice of Krang still exists, and will continue to exist, for likely a decade.

Apparently, after pathology was finished examining him, a piece of my former tumor was preserved in a little block of wax. Somewhere in a pathology department, filed away with a little pathology address, there is currently a tiny chunk of the thing that derailed my entire life for seven months, just sitting in a little wax box like the world’s worst souvenir. And now they’re shaving off a little piece of it to create this personalized blood test.

Cancer is very weird.

But my absolute favorite part of reaching the “after” has been getting to feel the palpable relief from my friends and family now that we’ve shut the door on this chapter. Watching them exhale. Seeing tears well up in their eyes. Knowing they can stop being scared for me.

And I think I’m finally starting to exhale, too.

Other than finding a new normal (or my old normal? Or my new normal based on my old normal?), I’m mostly just trying to wrap my head around the fact that suddenly, there isn’t really a next thing to get through. For the better part of this year, there was always a next thing. The next chemo. The next scan. The next surgery. The next fat test. There are appointments and scans and pump refills, sure, but there’s space to breathe in between.

And I’m still in complete disbelief that I only had cancer for 222 days.

Stage 4 colon cancer with massive metastases to the liver.

For 222 days.

That’s it.

Somewhere deep down I knew my story would go like this, but I’ll never not be in complete awe of just how quickly that ending came.