Schrödinger’s cancer (ahem, cat)

It’s a known fact that my particular neuroendocrine cancer tumors don’t show up very well on CT and MRI scans. Unfortunately that’s just the way it goes for some people. It wasn’t until I was given a Dotatate PET scan in July 2022 that I learned just how widespread my tumors had spread. So, although I’ve had both CT and MRI scans since my Big Surgery, and they’ve shown a little spread in my liver, I won’t have the full picture until my next PET scan on September 3rd, in about 6 weeks. (PET scans utilize radiation, so my oncologist doesn’t want to do them too often. It’s interesting to note that different NET specialists have different schools of thought about how often is too often.)

Until I see the upcoming PET scan results, I have both extensive growth and not very much. It is an unknown. I am Schrödinger’s cat.

I’ve been making the most of this time. I’ve taken several summer family trips, and have more lined up. With my daughter age 11 now, I can sleep in while she wakes up earlier. I’ve been working on lots of house projects. I’ve been spending more time with close friends, and more time with pets. I’ve picked up a couple of new hobbies (although TBD if I’ll actually stick with them). I’ve been volunteering in my daughter’s school library. I’ve been doing some free babysitting for friends, because gosh darn it I love young kids. I’ve been in more therapy and attending more support groups, which is definitely good for my mental health.

Part of me wishes that I had stopped working when I had my metastatic diagnosis in July of 2022, instead of going back to work and pushing through for seven months more. Part of me wishes that I had stopped working back in 2015 when I first was diagnosed. But, I loved my career as a Librarian, and the transition to a Stay-at-Home-Mom/Cancer Patient was (and frankly continues to be) really difficult, so maybe the way I did it helped me walk in both worlds for a little while.

What will happen if the upcoming PET scan shows extensive growth? Probably another big surgery. There is a new non-invasive treatment called histotripsy that shows promise, and I will talk to my oncologist about that. And, of course, I’m always keeping an eye out for applicable clinical trials. In any case, it’s important to keep my body healthy and strong so that I can recover more easily for whatever is coming down the road.

In the meantime, my abdomen aches all the time, I get winded pretty easily, GI issues plague me almost daily, my flushings are getting a little worse, my monthly anti-cancer shot leaves me sore every time, and low-energy days hit me like a ton of bricks more and more often. But I have SO much to be grateful for (family, house, pets, friends, community, etc.), and I appreciate the beauty of life all the time!