Another One

Just like hearing DJ Khaled say “Another One” on someone’s song, hearing it around cancer treatment is upsetting.

Friday- Last Week

I had a standing appointment at the cancer center for an Xgeva shot (to promote bone strength since I have bone mets) and labs. Normally I would also have an infusion of Keytruda however, given that my lung infection is not fully cleared up, we have suspended it indefinitely.

As all my normal appointments go I have to get blood drawn from my port for labs. If everything comes back normal- or normal for a cancer patient- we proceed with treatment. Now what normal is depends on your cancer and treatment regimen. My labs have always come back as normal as they need to be except Friday of course. Friday my bilirubin (more info here) levels came back higher than normal, not a dangerous level, but for me it was out of the ordinary and indicative that something was going on.

The perks of being in the cancer center? Your care team has pull in the hospital and can get you a CT scan slot right away. Fast forward a few hours and I get a message back from my oncologist interpreting the results of the CT. More growth was found and the lymph nodes were pressing on my liver, enlarging some bile ducts. What does this mean?

Well it’s not good. Growth and spread are never good things in the cancer world and frankly the thought of cancerous lymph nodes (yes plural) pressing on a vital internal organ doesn’t give me a lot of hope.

As a result of this I will be on my fifth different medicine regimen. We haven’t settled on the next med but Everolimus (Afinitor) seems to be my next hail mary. Again though nothing is settled- that is just a proposition because having a rare cancer means there is very little research for me out there. (With more being cut just this year. Yay!)

Next Steps

I go on Tuesday (tomorrow) for more labs and I get an MRI next week to best diagnose everything. I have stopped taking my daily dose of Lenvima and am currently not on any cancer medication right now. Sure each medicine has a half life but I’m not actively treating it which always makes me feel worried. But I love my care team and I trust them, they are aggressive which is what I want. They explore every avenue- even seeking outside opinions both at request and proactively. But does any of that put me at ease?

Mentally it sucks- it’s another gut punch. You don’t hear people talk about how plan E was the one or 5th or 6th time’s the charm. So yeah my hope isn’t overflowing but it’s never gone. . . . . until I’m gone.

I will keep updating as I know more but for now that’s about it.

-Joe