June 6: Day Six

Written 21 hours ago

Today marks one week since our world toppled upside down when they discovered via ultrasound the mass in Mom's liver: 7 days, 168 hours. 

There's so much to say, and yet we're all so vulnerable, numb and raw there is also little to say. It makes it difficult to know exactly where to begin. Yet 'somewhere,' continues to echo. 

Yesterday Mom had a good day. She was able to spend some quality one on one time with friends, take a nice drive with Dad, attend Angela's son CJ's ball game, and get a little Jax retail therapy. 

She didn't sound as upbeat and chipper when I chatted with her this am and I know it is because she didn't feel as well. A normally tired morning now incites paranoia that the tumor is spreading, things are deteriorating, and even though it is largely unspoken it hangs there like a really bad odor.

I suspect we will never quite master the intricate balance between knowing when is too much versus trying to suck every second out of every moment we are given. 

Mom is looking forward to the weekend and a couple family celebrations that will put her smack dab in the middle of her favorite things: family, and more family + friends. 

Saturday, my Mom's nephew Daniel will be married. I think it's safe to say we are all looking forward to a little diversion and there is no better one than a love party for two deserving people; although Mom has shared with me more than once that she's nervous people will make her a spectacle and she doesn't want to detract from Dan/Jess' day, party, and celebration. 

Sunday, we'll celebrate her retirement. There will of course, be plenty of baseball games in between although I doubt she'll have time to attend those.

It's strangely awkward to try and balance and integrate "regular" life with this surreal one we just inherited. 

I've also spent a fair amount of time pondering this cruel irony: we tend to trudge along without making significant change in our lives until something completely life altering like this occurs; then we are somewhat forced into instigating/creating it; knocking items off our collective bucket lists, but then we wind up doing so with gaping holes in our hearts. 

I am surprised at the the moments I find myself crying, angry, and sad. I literally cannot see them coming. I taught a yoga class early this am and thought the breath work would do me some good. I had to quit after two inhales so I wouldn't collapse into a sobbing heap on the floor. What is not surprising is the exhaustion; it is akin to single mom newborn sleepless nights kind of exhaustion, only with a horrific undercurrent of sadness. Nonetheless, every day, and darned near every one of those 168 hours, we have been humbled and blessed by the kindness, prayers and love of others.

After some digging, we learned this afternoon that Mom has been approved for Nexavar. It's difficult to imagine that she wouldn't have been, but it was still a huge relief. She has also been approved in a preliminary review by insurance. Now we await a call from them with the news of how much it will cover and she'll need to give them an indication that she'll pay the excess. THEN it gets sent to her via overnight FedEx. We are being told that the drug runs around $8,000 a month. It is a small price to pay to buy some time, and at this moment I am confident most of it will be covered by her insurance. 

We've certainly all learned that this moment is all we really have, so we'll operate there for now. I talked with her nurse today and she was pleased the procurement process was 'going so fast' which again, seems like total lunacy but is nonetheless the reality. 

Please continue to help us spread the word about Mom's party Sunday, 2-4 at the Isaac Walton. We aren't really sure about the best way to do so outside of this means. In the meantime, please keep praying. 

Humbled love from all of us...