It's Hip to Be Scared
This is some real Huey Lewis and the Blues….
I don’t know how many of you speak Radiology or Doctor or MyChart but for those that don’t spend their waking hours swimming through MyChart, it can be summed up with one word- WORSE.
That’s right, the PET scan that Blue Cross Blue Shield deemed unnecessary, showed more cancer. Thanks again BCBS, you guys are the best!
Summary- the lymph nodes in my chest abdomen and pelvis that were enlarged got bigger and there are now also four spots on my pelvis and hip bones. More cancer = more worse (there is more to the results than just that above).
Now I have been spoiled with my care team and with an oncologist that responds to my messages usually within 2 hours. Unfortunately today he is out on vacation and unable to respond, which he is allowed of course and I have to accept. And I will accept that as I spiral through this rollercoaster now. What would change if he talked to me? Not much today other than having more knowledge. And who knows if that knowledge doesn’t accelerate that spiral harder?
Now some might say “Joe, you don’t know for sure or you have to keep your head up and think positive. Anything can happen.” Well I know how to break apart medical results in dozens of ways via google and medical journals to get a decent idea of what’s going on. And again- more cancer is more worse.
There’s things people need to know or realize too:
My cancer is rare, pretty rare. This isn’t Pokemon or Antiques Roadshow so it’s actually a bad thing.
There is no cure or magic bullet. This means:
There’s no bell ringing in my future.
There’s no happy parade where I’m in remission.
There’s no end to this until, well, the end.
It will get worse.
Worse means death eventually.
So it is difficult for me to think positive or that anything can happen. I’m not giving up or quitting, still fighting it as long as I can. I just don’t want to lie to myself or others. Cancer fucking sucks.
Am I jealous of those that have a cure and get a new lease on life? Hell yeah. But I’m happy for them too. I wouldn’t wish this on anyone nor would I wish that someone else doesn’t have that chance just because I don’t. And those folks are still dealing with cancer in some respect long after it’s “gone.”
I am grappling with the word hope right now. I’m not going to say it’s gone and I’m not going to say it’s there so I’m going to leave it in the room and think more on it. What I do know is that cancer is sticking its claws in me. Where it was scratching now it is gouging- pulling life out of me in bigger chunks with every appointment and result and pain. It wakes me up in the middle of the night to grip me in fear- both physical and mental. It never leaves my side. It’s an arrangement I can’t break.
Throughout this journey, information has been a double edged sword. At times it can save me and bring in light and at times it can extinguish any light that is flickering. Right now, I want the information even though I know it’s going to hurt. I know it’s going to put lights out that might never be lit again. But I want to know. I want to know what I’m in for so I can find the lights before they’re gone. To live in them for just a little longer if I can.
Thank you for reading. I’ll keep updating as always but for now I’m going to sit with some tea and Dilaudid because as they say, the horrors persist, but so do I.
-Joe
Joe…. I hope it’s okay that I respond to bad news by directly asking you about a book (I’m a “let’s talk about the horror… without talking about the horror kind of emotionally awkward type of type? 😬 ” A “can we use a movie or art to help us divulge our true feelings instead?”)- so I wanted to ask: have you ever read The Bright Hour by Nina Riggs ?
I ask because her book was left on my soul like a scar I (for once) was okay with having.
I gave it to someone young and dear to help them process the death of their sibling to cancer (died as a young teen), after I read it and felt … altered. So it’s one of those books that someone only gets if they GET it. And it doesn’t mince words, doesn’t paint fake positives and platitudes .. She was Emerson’s great great great granddaughter or something in that number of greats - but wrote about everything to the end in a way that few have and I believe few ever will again. Most would probably not “get it”; Appreciate.
To me?… it’s a book I carry with me [internally and obviously metaphorically ] like a badge of honor to have read it. I imagine you would “get it” perhaps most of all— and given you’re a beautiful writer, you’d get it on that level above and beyond too
I wish I could respond to this bad news without sorrys or fake “chin ups” and just sit in the bad with you, and then (just because we all want to do something. Anything. Some small thing)- slide the worn book across a table to you for whenever you need 🖤
That's a lot of info. Holding space for you, friend. What music shall I blast and send that giant 'F you, cancer' into the universe?