Far too many times I stay awake way too late on "pre-clinic" night. It just seems odd having a day of the week with such a name. One of those words/phrases that we never knew 16 months ago. But realizing the only thing "certain" in this epic is uncertainty - the mind wanders. Each week is a new set of bloodwork. Will it be good? Or will something be out of whack?
I know tons of folks say "you just have to be positive". We do stay as positive as possible, but the fear and nerves don't listen to such things when logic dictates positive things just are not certain. We can see it in Scott's eyes each Thursday. He has ativan on Wednesday nights, or he just can not go to sleep. He becomes guarded after dinner on Wednesday's.
Thursday. Just one of the seven days of the week. I don't think we'll ever be capable of mentally considering Thursday just one of the weekdays again. It is like this monolith on the calendar each week. If all is well, it can be a week until the next Thursday that has us feel.....well.......not exactly great, but the intake of seditives lessens.
At Scott's diagnosis, everything was beyond overwhelming. Beyond reasoning logic into how we would deal with such devastating news. Now, over 15 months and countless sleepless nights and complications, one still doesn't really know. Yes, we know the routine of drugs - as long as it is a routine cycle - but the best word I can use for it is the word "grind". Folks ask me all the time, "how are things?". I find I answer by saying "it's a grind. you just have to keep plowing". It's not a negative term, it just is that the worries and processes don't change. They grind along. Weeks with "perfect" bloodwork seem to fly. Weeks with some reading a bit off drag like crazy.
Then things happen with kids you know. Not from their website, but kids you see in the hospital. In the clinic. Kids that develop sets of complications which seem to spiral madly. And then you turn around and realize the kids are gone. They didn't make it. Then nothing seems certain. You question everything about where treatment is being done. It's not logical to question, it is just what your mind does.
Those thoughts are with me because virtually any cancer site you go to contains information about "survival rates". Once you have a child involved in this nightmare, those numbers mean squat. I'd wager a lot of money if you surveyed all the parents at clinic, they have the "50 percent" answer. Each child is going to get through this, or they are not. That sounds cold, but most "insiders" know it isn't. And some of the sites and even doctors state "oh, that survival rate is 90%".
Line up 100 kids in the hall, and look at 10 of them. 10 of them will be gone.
90% doesn't seem so dandy then.
Matthew and Sierra are gone. Their parents care nothing about that stupid survival rate. It's a meaningless number except for researchers. I don't begrudge them for working to better the number, I just wish the number wasn't such a huge "comfort" tool as it is made out to be by so many people.
Sorry to be such a downer, but that is the reality of this disease. It never lets you rest. You can't, or the lion in the house may awaken. You must continue to grind. Scott grinds. Stephanie grinds. I grind. Derry.....well......he grinds....he's just too cool to openly admit it.
I'm off to attempt sleep now. Tomorrow is Thursday. The nerves await. Sadly, Sierra has no "Thursday" tomorrow.
And that simply breaks my heart.