The Cometriq is working. The cancer is receding.
When I shared the news with friends and family, everyone was so excited and happy. I was happy, too. Or maybe, I wanted to be happy?
Part of the reason my last post was so short is that I didn’t want to stand in the way of some good news. I wanted everyone to hear something positive and enjoy that moment. Because it is good news, and it could be the start of a full recovery for all we know. But I have mixed feelings about “getting better.” I would love to enjoy this moment with you, but for better or worse, I’m always looking 10 steps ahead.
Mixed feelings
When I got the news, my first thought was “Wow! This might not kill me!” My second thought was “Wow! This might drag out for years…” Whether I recover or I don’t there is still a long road ahead. I’ve already had a few people ask me if I’m feeling better. And I say, “No.” Because …I still have cancer …and I still feel like crap.
And I’m not sure how the chronic pain is directly connected to the cancer – but as the cancer is receding the chronic pain is coming back with a vengeance.
In the last few days, I have experienced some of the worst pain I’ve felt so far. Sometimes it’s tolerable and sometimes it’s all-consuming. Aching all across my chest, or across my shoulders, or both at the same time. And then some special kinda pain that stabs me every 10 seconds directly underneath my shoulder blade.
The side effects of this medication are pretty bad, too. My scalp is ALWAYS itchy, my face is itchy and breaking out, my stomach is wonky, I feel slightly dizzy and tired ALLLL the time. Sure I’m probably extending my life with Cometriq, but I’m also trading one set of symptoms for another. And let’s not forget, this medication might only remain effective for a couple of years.
Then what?
So maybe after being on the Cometriq for a while, the side-effects and chronic pain will get better. But if the pain doesn’t get better, then does that mean the chronic pain becomes a mystery all over again? Please, no.
If the cancer is receding that also means we might eventually attempt surgery and/or radiation, which brings about a host of new financial and long-term health worries.
I worry that after going through all of these treatments, how much Matt will be left? Will I really be healthier? Will I really be happier? What kind of quality of life will I have? I think these are important questions and ones that a lot of people are afraid to even talk about.
Happiness is important
My plan is to continue the treatments that my doctors recommend. They seem smart (or maybe they just found lab coats in the closet), but I’m also not going to go blindly into the next treatment just to extend my life. Because I’m not interested in just living longer for the sake of living longer. When did life become a contest to see who can live the longest? Why do we need to be in our 90’s before people say we’ve lived a “full” life? I’m not interested in petering out. I want to enjoy my life, however long or short that is.
So the good news is that I’m not on fire, but now I’m simmering in the frying pan and it still kinda sucks. Let’s see how it goes, and if the Cometriq keeps working and my quality life begins to get better, then we’ll keep on it.
Next Steps
On Tuesday (21st) we are meeting with a possible therapy organization for the kids. The kids are overall handling everything amazingly well. But I know that won’t last forever and I want resources available to them when that time comes.
Later that day we meet with the people in lab coats to discuss what kind of progress I’ve made with the Cometriq and figure out the next steps. Maybe if things get better, they’ll let me drive again!
BTW
I’ve got a bunch of new artwork prints available on my web shop thing! I also have some signed originals. Buy art from a guy with cancer and the market value could double in just a couple years! www.artpal.com/matthewlouis
