When your cancer has no cure but treatments make it manageable to a certain degree, it becomes a type of chronic condition that requires you to seek a balance in life. A balance between living with cancer and just living. The tricky part though is planning for that uncertain future.
I wonder why I’m writing all of this in a detached “you” form instead of first person. I suppose that’s better than a creepy 3rd person “Annie wonders how far into the future she can safely make plans”. Does anyone else hate it when people refer to themselves by name? Are we wondering why Annie is rambling instead of continuing on the thread started in the first paragraph? Avoidance maybe?
Let’s throw in some background to cover the last few months I haven’t written anything. The surgery in June was successful though I had many more tumors/lesions than had been on the April scan. Didn’t take long for the little bastards to settle in and invite A LOT of friends. But they’re gone.
I then went through insurance hell trying to get the new drug. The low low price of $12,000/month may have been the sticking point, along with the head prescription coverage guy vacationing in Europe and denying my coverage from afar based on a wrong diagnosis. Yeah, they’re behind a few years. In the end though I got it and am still on it. As of mid November it seems to be working but I scan again this week to check things out. Given the growth rate earlier and the unknown new drug, we’re not giving it a chance to get ahead of us!
Being on a drug this new adds a whole new level of uncertainty to everything. Will it work for years or months? No one has been on it long enough to know. I’ve been on it since July – if it has a 6 month window, we’ve hit it. Am I able to tolerate a high enough level to make it work? Is it too similar to the last drug to last long given my resistance to that one? Or will this be the one to keep it under control for a decade? If it stops working, will there be another option that will work or will things progress quickly after this drug as it has for many? We can’t even guess.
Fast forward to last week when D1′s high school band was accepted into a wind ensemble festival in NYC in 2015. They will be playing at Carnegie Hall! This is one trip I REALLY want to champerone for various reasons. But it’s 14 months away. A lot can happen in 14 months. Will I be fresh out of surgery? Will I be cruising along on this same drug with side effects having become more tolerable? Or will my ashes have already been spread on my favorite mountain range?
This is what I do at night when other people sleep.
I do want you to know that I’ve already emailed people I’d like to see while we’re there as well as the band director to request chaperone duties before other parents take my spot. I AM planning to be there to watch my first born play in Carnegie Hall! Don’t get me wrong, I won’t thrown in the towel. I’ve made it 8 yrs next month. That’s not a small thing.
This week I also have a high school open house for D2 – my kiddo who was 5 when I was diagnosed. We are getting there and I will continue to do whatever needs to be done to assure I’m here to see more and more of their futures and mine.
If only I could shut up the voice of doom that has comes out to chat in the dark.