To Be Continued

So I have even more updates which usually is not a good sign. And it’s not I guess? So since my ER visit and last post the random pain has gone down. Not away, but not severe enough to warrant a trip to the ER. So we’re going to have an MRI to see if one of my affected lymph nodes may be resting up against a nerve. If so, maybe we can zap it with radiation and fix that issue. If only we could do that for the rest of the lymph nodes, but I’m afraid there’s too many and they’re around too many vital parts.

So MRI is scheduled for later this month. Who knows maybe the pain will go away before then?

Finally spoke with my endocrinologist about my biopsies on my thyroid. Right side is benign as we knew but left side is inconclusive. So he gave me two options- 1) wait 6 months and try to have another biopsy to see if we can get a good sample or 2) just take it out now. Since I’m going to have routine scans every three months I opted for option 1. Plus if I can avoid one more hospital trip or stay before the end of the year that’s a win.

Sorry doc, you’ll have to wait

But anyways, yesterday I went in for my first Avastin infusion.

And infusion number 8 overall.

The infusion went fine. No reactions or side effects (yet). I’ll start my daily pills in about 2 weeks- Tarceva and Doxycycline to combat the side effects of Tarceva. Again, the side effects of this treatment are hopefully a lot less severe than the ones I have now.

I also got this nice care kit from Lemons of Love that definitely put a smile on my face. Check them out at LemonsofLove.org

Some really thoughtful gifts, notes and even a picture. Also if you’re playing along at home, you might notice a clue in the bottom right corner of the box as to what’s next. That’s right- I will be getting a port put in later this month. Since my infusions will be every two weeks and I will need labs done as well, this just saves my veins (and my hands that look like they have swollen blueberries under the skin).

But the showstopper yesterday, the main event, the reason you’re all here.

I think I had known the answer to this question I was about to ask my doctor deep down all along but never really asked.

“Is my cancer curable?”

Now it was thought that maybe he wouldn’t be able to say it or wouldn’t want to say it as a medical professional. Well boy was I fucking wrong.

“No, this is definitely not a cancer we would consider curable.”

It’s not his delivery that was off or anything, just the frank matter of fact statement that caught me off guard.

He went on to say that the goal is to keep it at bay and shrink it enough with treatment for as long as possible. Did I know this deep down? Maybe. Did I make peace with it? No, not yet.

It’s difficult to put into words the thoughts and emotions that go on after hearing that. Definitely anger and fear and sadness. I’d love to say that I’m some ultra positive social media influencer who is doing cartwheels on a beach and living my “best life.” But I’m not. I’m an almost 40 year old dad of two. And if there’s one thing I will not do with my remaining time it is not becoming one of those obnoxiously positive online people who “don’t stop living.” Note: I will keep living as long as I can, you just will not see me make rap parodies or film myself crying for you.

Jokes aside it sucks. Not really a better way to put it. I know that my time left could be decades and that a new treatment could be years away that might help- but it’s like the Final Destination movies, I know it’s coming, I just don’t know when. Truth be told I don’t know if I would JC want to know when either.

So what now? Truth be told I’m still coming to terms with it all. It has hit me a few times and I’m sure will continue to hit me in waves. But I’m still undergoing treatment and will continue to do so until it stops working or my quality of life is not what I want it to be. Hopefully that’s all a ways off though. I have a lot to live for in the meantime. Like a trip to the most expensive happiest place on earth this weekend, Disney World!

So if you see me in the mouse’s house on my little jazzy scooter in the Florida sun shout something about your affinity for RoadHouse to me.

Also if you’re reading this- buy tickets for Gilda’s Night Out tomorrow (or donate if you can’t make it). The event is going to be amazing and I’m sad I can’t make it. More details and silent auction link here: www.gildasnightout.org

-Joe