in a blink

 Things are happening.

I can't get around by myself. Aaron has to help me get up/down and then I'm using a walker to get to different places. By places, I mean bed, couch, toilet, bed, couch, etc.

 Friday the 26th I had another scan and it showed that two places are getting worse and one place had gotten slightly better. We think it is why all of a sudden I went from 100 to 10.

We traveled. A very nice friend of mine gave us so me of their timeshare points and we've been to Florida. The timing was perfect because I was still able to get around and be myself. The last night of the trip was really hard though. All of a sudden all of my hair fell out and I had no tools, no scissors, no shavers, no appropriate combs. So a bunch of hair falling out in clumps all over perfectly white bathroom. It felt like I was going to through something vulnerable at a very public place. I had long ago accepted that I was going to lose my hair just not like that.

That very next morning I was going to need to be in a plane and my leg was swelling up and we were afraid I had blood clots. It was hectic. I was half bald, my leg was swollen and we're running around trying to find urgent cares before I got on the plane to go back to Michigan. No stress. None. Everything was fine. 😅

Aaron and I had splurged and gotten first class tickets and a I am never going to go to coach again. Board first, have plenty of space to stretch out, and free food and entertainment. All in a mask required environment. I felt safe and well cared for.

Then we got back in a snow storm so that was super convenient. But Torin was snuggled at  home with Mimi and Papa so that's perfect either way.

My mom came to visit for a couple of days because it was around her birthday and Sunday the 20th she left to go to my grandma's house. That night Aaron slipped and fell and gave himself a goose egg when he was walking the dog so I had to drive him to the ER. Thankfully his goose egg went down. I was legit terrified I had no idea what I would do if anything happened to him. The very next morning I couldn't walk by myself anymore. I've fallen so many times I have forgotten how many now. It was a couple nights of crawling to get around, refusing to wake Aaron up before I had to admit I couldn't walk alone.

So last week it was doctors' appointments and drugs. I had an IV of new medicine. First time IV, very easy. This week, I have also had regular nursing, PT nursing, OT nursing, and a hospital bed delivered. My mom comes tonight. Aaron's parents have been here every day forr the last week or so.

I am swallowing what little pride I had left. I hate that I can't walk or use the bathroom by myself. I have people coming to my house and touching and cleaning all of my stuff. I order groceries and do it wrong. Torin needs constant attention and if Aaron wasn't working we'd be fine but still not as fun as we should or could be.

The therapy is good and it is helping me maintain the illusion of independence but I'm either going to see some quality of life improvement from the IV drug in the next few weeks or this is it.

When my grandma Jane and my grandpa Al were sick mom and I spoke about how things look at the end. Grandma was physically perfect but mostly mentally gone and my grandpa was physically weak but his mind was all there. Mom and I have both hoped for Grandma's fate to be physically fine but mentally unaware. We have always teased that Mom is going to live in my house and get a padded room all to herself. Unfortunately we can always get what we want. I am way more mentally capable right now than I thought I was going to be which you would think would be great but it's not.

Last night I called Aaron at 4:30am to get me out of bed to use the bathroom and also to take some steroids so that I can function throughout the day. Torin was sleeping at Mimi and Papa's so we both slept in after the nighttime shenanigans.

You know the rollercoaster of emotions of being able to stand yourself but then need someone to pull your pants up for you? To struggle to stay upright while depending on someone to do something you've done a million times? 

Aaron is the best pants guy. Like if you're going to need to rely on that kind of help than Aaron is #1. I didn't marry him for his nursing qualities but true loves pull your pants up at 37 while your 2 year old runs screaming chasing the dog.

That's the part of cancer they don't talk about. I'm fully mentally aware and have to watch my loved ones "deal" with my limitations. Everyone who knows me knows I prefer to be the planner and the caretaker so this is deflating. The last feel you want to feel when you feel unwell, weak, not yourself is deflated.

So in sum, my body quickly betrayed me, my mental facilities are holding up, I am experiencing all of the ups, downs, and in between feels, and we are getting by.

This is usually the part where everyone starts calling. It's ok, I'm too tired to talk much but it is time for zoom dates. Text or email, you'll reach me easier. We can plan around my med appointments.

Over the next few weeks my condition might improve but we are trying to prepare in case it doesn't. Expect me to be out of it.

Someday he'll selfie

If I can lay here then I will sleep here.

The bathroom malting.

Evidence of falling.