Years? Probably Not

You can guess what that means but either way I’m going to tell you. My long awaited consult with my oncologist happened this past Wednesday. Since my first scan back on October 1st that showed further metastasis, I have been dying to have this appointment (no pun intended). I took the earlier scan knowing I would not have this meeting until weeks later. Luckily I was able to share a few messages with him and the team and get the ball rolling on stuff with their help.

So let’s fast forward to now and take stock of what is happening. I had my second radiation treatment today. So far no real side effects or pain relief. The area, which is just under my ears and back a little, does feel slightly irritated and tender but not painful. 8 more sessions to go on my neck however my right hip also has pain so we’re hoping to develop a radiation plan for that as well.

I refuse to link to this song

Currently I have pain off and on in my neck, shoulder and hip- the neck and hip confirmed to have cancer, the shoulder who knows. Currently for pain management I have Dilaudid.

Moving away from the “fun” and back to my meeting- I had 30+ questions for my oncologist. I asked everything from medical interactions to side effects to alternative options and everything in between.

Here’s a sample of some of the questions I asked and his responses:

1. Is chemo an option now?

   1. No, still would not work for my cancer type.

2. What activities or exercises should I avoid?

   1. Crossfit, heavy weights, roller coasters and etc. (I’ll return all my heavy weights….)

3. What is the next step or steps if this treatment plan doesn’t work?

   1. One more known plan- Lenvima plus Immunotherapy. If that didn’t work we would have to look for an appropriate clinical trial which, given my rare cancer, is a long shot.

4. When do we scan to see if it’s working?

   1. In one month we scan my brain for a new baseline.

   2. In two months we do another PET scan from neck to thigh to check if there has been growth, stability or shrinkage.

5. On outlook: “How long do I have left? Are we looking at months or could we control the cancer for years?”

   1. “Probably not years.”

I recorded the meeting, which was a telehealth visit, because I was afraid I would hear this specific answer. And I’m glad I did because my mind went blank for a little. I don’t know how to describe the feeling of hearing that. I still had more questions so I think I just went into autopilot kinda.

It’s been two days since then and I’m still processing it. Wednesday night I could hardly look directly at the kids. All you think of is what you’re losing or what cancer is taking- because that’s all it does is take. It takes your healthy cells, tissue and organs. It takes energy and ability. It takes your belief that things will work out, it takes your hope. And “probably not years” to me, a parent to a 12 year old and a 9 year old, means it takes so much time. It more than likely takes high school graduations, wedding(s), maybe grandkids, career milestones, successes and everything else I want for them and for myself to witness and celebrate with them. Bottom line it takes them and still more. Loved ones, friends and life- every candle that once had an endless wick it seemed now burns faster towards an end that races towards me.

I’m still processing it everyday. I don’t know if I’ll ever stop processing it. Everyday there are tears, lots of them. Everyday there’s the question of “Why?” Everyday I’m angry. Everyday I wonder what “probably not years” really means- months? weeks? 2 years? To his credit my oncologist did say that all the statistics out there are history and are best guesses on future outcomes. “I’m young and better off than most of the patients in these statistics” I am also told. But the fact remains, this is the first timeline he’s given me in the almost three years I’ve been in his care. To be able to say that without pleading or asking repeatedly tells me more than his words might even say.

So my incurable cancer looks to be terminal now. Or really it’s all semantics anyways. Death is death- whether incurable or terminal the cause. The cancer has survived an organ removal and 4 different drugs. Hell, not only has it survived it has grown and spread. So I’m not naive or dumb enough to think I’m special or some miracle case. I’m just another person, dying since the day I was born, just faster now. I’m not going to throw the towel in anytime soon but I’m also not going to pretend that death’s shadow isn’t cast over me anymore.

“Until We’re Stars” - @psychedelicthinker on instagram

-Joe