Back in December (that was like 5 years ago, right?) I mentioned in one of my blog posts that I didn’t feel like I was fighting cancer. It felt more like cancer was dragging me wherever the hell it wanted. Well, I’ve got some good news and bad news. The good news is that I no longer feel like I’m being dragged around. The bad news is that the fight has truly begun.
Yesterday, I received some of the most disturbing news I’ve had since they told me the cancer is inoperable. I’m running out of time.
The latest drug I’ve been on, Lenvima, is not working. My calcitonin has reached an all-time high of over 13,000. And the lymph nodes in my neck are growing larger and more painful.
There are very few options left, and the rest of the options are considered “dirty drugs” because they pretty much suck. They are broad-spectrum and therefore will cause me lots more side-effects. Many of which I will probably find intolerable, and will have a less than 15% chance of being effective.
This is the point when people in my position just see how long they can put up with the treatments that are keeping them alive. When we hear the phrase “they lost their battle with cancer”. This is what they are talking about. This is the battle. There is no winning, just sustaining. I’m going to keep fighting until my quality of life is so bad that living isn’t the best option.
New plan
I’m going to try a higher dose of Lenvima for a few more weeks, just for the fun of it. (Higher dose = more side effects – yay!) No one really expects it to be more effective, but it’s worth a shot.
They are going to present my case at the tumor board again, next week. We are going to see if surgery or radiation are options. Surgery and radiation would be used purely as palliative. Which means they are just trying to find ways of making me more comfortable for the remainder of my life. (Is this all really happening? I mean, wtf.)
I’ll get scans at the end of September and probably start in on a dirty drug the beginning of October-ish. I’ll have a few chances at different dirty drugs and then I begin the big slip-and-slide to the light beyond.
Tick Tock
When we started this journey back in December we had an optimistic outlook of sustaining my life for about 10 years. A lot of things needed to go right in order for that to happen. Well, a lot of things didn’t go right. At this point it would be optimistic to say I’ll be around for another 2 years.
Once I discontinue treatment, I will have only months to live, not years.
I can’t stop thinking about my kids and how much I was hoping to see them grow up. 10 years would have given me the chance to see them graduate and become “adults”. Now, I’m shooting for one more Christmas and one more birthday.
Despite all of this, my spirits are still mostly up. I wake up grateful every day for all the love in my life. Sometimes it’s actually hard to complain. 🙂
