Lack of grace?

I’m breaking all sorts of records today by posting twice in one day after such a long absence. Actually, have I ever posted two?

I’m spent the last hour reading articles that I won’t provide a link for because I don’t want to give them anymore attention than they already have and I’m too lazy. Granted it involves a NY Times writer and his wife so they probably don’t need me to send my 3 people over anyway.

Long story short, he and his wife both wrote articles criticizing Lisa Boncheck Adams for tweeting and blogging about her metastatic breast cancer. Google it. It’s everywhere. It showed up in 3 different articles on my Zite app this afternoon and caught my eye for obvious reasons.

There is a quote at the end of the NY Times article that suggested that people who choose to really “fight” cancer (God I hate war comparisons!) aren’t maybe handling it with as much grace and courage as those who accept the inevitable and just die already. I’m paraphrasing.

The author also compares Lisa, a young mom of 3, to his father-in-law who died quickly. Yes, the whole mom of 3 thing is probably what sent me over the edge.

Who the hell are they to tell us how to properly die. To me, going to “heroic measures” to be here for our children is what courage and grace are all about. I’m not on feeding tubes, they aren’t changing my diapers, I am not dependent upon them to care for me!

Instead, I am going to their band concerts, baking them birthday cakes and doing what I can to teach them all I can while I’m still here. Get that? While I’m still here! I will likely get to see my oldest graduate from high school.

I am on drug #6 and recently had surgery #4! These are the measures I go to for my children. Is it fun? No! As a matter of fact, most days suck. But I AM HERE! I am putting on the best face possible for them and I am doing this thing!

Does it require a boat load of courage to face each scan and pop the pills that I know will make me feel horrible? Why yes, I think it does! Would dying 8 years ago have been easier? Absolutely. For me. But not for them. The cancer patient gets the easy part. The ones left behind? Not so much.

It’s called parenting! Parenting despite what we’re going through on any given day. Parenting in a way that we hope will make them stronger, more courageous people who can handle life’s challenges with grace.

Which is exactly what I’m seeing in my girls and it reassures me that I’m facing this in the right way.

Do you get to judge me for my choices? Sure you do but only because I’ve put myself out there publicly. Will you be right? It’s doubtful.

Planning for an uncertain future

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.