Monday, November 6, 2017

Long Time Coming...

I haven't written in a really long time. This summer has gone by in a flash, and to be honest it hasn't been the easiest. 

Medically things are going well. I'm in partial remission. I had a scan on October 13th, and the results were mostly good - most things stable, a few places smaller and less uptake - but one or two spots that are either larger or have more uptake. With immunotherapy this can be an ok result. Many times inflammation is the first step of the immune system attacking that spot. For now, that is what we are calling it (there are some other factors that let us think this is the more probable case). However, it has also led me to think about ways that I can facilitate this actually being and STAYING the case. 

So I went back to Tong Ren last week - after an almost whole summer long hiatus due to MassChallenge - and it was so amazing. I will be making sure I get there at least once a week no matter what day or what I have going on. I need it. It helps me so much in so many ways. 

I feel I missed the entire summer - for yet another year in a row. At least this one is for a much more exciting reason. CareAline was accepted into the MassChallenge business accelerator in Boston this summer. We started at the end of June, and are just finishing up now. It has been an amazing experience. Not the least of which because it got me out of bed and moving toward something. But we have been offered so many opportunities to put in place things to grow CareAline and help even more people, so we are really looking forward to what comes next. And even more exciting is that we made it into one of the top 26 companies, and we were awarded the Gold Award and $50,000! This is going to be a huge help for us and especially for CareAline!. 

One thing that going through this program has reminded me of however, is that we are not normal. But more profoundly, that we will never be normal. It's so much harder for me to function in the normal world around me. I look like a normal person most days, but there are things that are definitely different for me than even the average entrepreneur. Things take a little (or a lot) longer to do; my schedule is dotted with days that I have doctors appointments and blood draws and chemo. I have to try and fit in rest in order to be able to function (but I usually don't). I can't remember things and the brain fog is extremely frustrating. It's hard to constantly need others to remind me of things I used to be able to remember at the drop of a hat. Sometimes I yell out because it takes that much effort to push information from my brain out of my mouth. But the biggest thing is that any little thing that pops up, I go straight to panic. A new bump? (It's growing.) An off blood test? (It's growing.) Lochlan wakes up with a swollen eyelid? (It's happening again.) *Lochlan is fine- his eye is better. He probably bumped it.* It will never leave our minds. It will forever be there. No matter what else is going on, our life will be derailed completely with even the smallest of things. And processing it, well, it's almost impossible. 

I blow up. A lot! Way more than I should, and definitely not in appropriate ways. I push down so much stuff through the day to day, and then something will happen - an egg will smash on the floor, the dog will trip me, the microwave won't work, the cookies won't shape (yup, I swore at cookies!) - and it's a total shit show. Screaming, yelling, crying, slamming doors, blaming other people, hating myself and my situation... the list goes on. It's just impossible to know when it's coming, and it's impossible to control at this point for me. For the most part, I avoid blowing up in public, but at home, it's inevitable. In public, I usually just have panic attacks. It often leads to me calling Mike, frantically needing help with something or to try and talk my mind down off the edge. He stops what he is doing and walks me through the steps to calm down, but it fractures the day. And if I have misplaced something, it's all over. Those are the worst. We will spend hours searching for things, frantically and unorganized, and if we don't find it, it derails the whole day, rather than just the few hours. 

So, I'm sure there is more to this post. But the exhaustion of todays unreasonable outburst is taking over (I can often fall asleep immediately after due to the endorphin release). I'm going to try and write more. Remind me. The memory issues are real. And reminders are always welcome. 

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