This weekl

 

This week has been one of the hardest weeks that I have endured since I was first diagnosed.  I’m not going to lie, sugarcoat any of this. We all know (at least I think we do) that last week was a living hell.  I was hospitalized for 13 days and then two days. Or two days then 12 days. Tomato tamotoe.  Anyways. 

Tuesday I had a check in with Dr Piper. Fluids, check in wham bam home.  Although I didn’t feel so confident about things.  So off I went with my hospital bag.  The difference is Tuesday was Trent’s birthday.  There was a lot of confusion on my end. There was a lot of repeating questions, repeating plans, not understanding what was happening where was I going, who I was seeing, why I had appointments what I was doing.  Thankfully I had my support.  

You see Bryan had mentioned it to me over the weekend. He had concerns I was forgetting more and more. He had concerns this was my new normal. That he was scared it was not just the meds it was something more.  I agreed I was scared and nervous and shouldn’t be left home alone. That things were scared I didn’t know what was happening or when it was happening. So here we were.  I made it clear I didn’t want to be hospitalized on Trent’s birthday (but I didn’t remember when his birthday was!). I completely forgot it was his birthday-I was devastated).  I sat and cried and cried and cried.).  Dr Piper came in and said they wanted to do some exploration testing to make sure my shunt was still in working order, everything was in place and normal.  And where we went from there. I agreed but not on Trent’s birthday.  The most important thing to me. Turns out his birthday was on Tuesday so I would be hospitalized on Wednesday and start then.  

Wednesday I woke up knowing I’d be going to the hospital at some point just not sure when.  And that this was the best place for me. Off I went.  

We had to tell the boys that I was being hospitalized and why. We made it very simple. Mommy was having memory issues and they wanted to make sure it wasn’t the new medication. They were just exploring all my options right now and everything was sure to be fine.  But deep down I’m not sure I believed that to be honest.  The new medication I am on is very strong and has terrible side effects. I have tremors, shakes, jerks the whole gamet.  Keep asking and I probably have it.  So this was a very big possibility   And here we were.  And I’m back to square one.  

Anyways  we have decided on a pain pump, which will help control things.  It’s hopeful this won’t be as exhausting and I can can control the exhaustion around when I am here.  This will take some getting used to when I am inpatient.  I miss my mom terribly though!   I’m excited she came to see me.  I miss the kids, my husband, my sisters the everyday life I have.   The struggle has been real   The struggle to regain my new norm has been horrendous   How do I acknowledge this and that it is okay?  

As I try and proof read this I realize it makes no sense.  This is what living in my brain feels like the past couple of days   It feels just like a fog  some days I don’t know if I am coming or going.  I thought of changing things to make sense but when I committed to writing this I committed to not hiding anything   So here you go.  Not trying to be rude just trying to show the real life of this horrendous disease.  No need to worry I am safe the doctors have a close eye on me.  I am committed to getting better and making sure I am healthy going forward.  But if you understood this please explain it to me…lol  you don’t understand 

I have a lot more to write but I’m tired now.  I am trying to not write out of anger but right now I am very angry   I’m angry at friendships I have lost.  People I thought I could count on that I haven’t heard boo from in months, weeks, years-it hurts.  Cancer is a lonely disease.  Yea I have people calling texting checking in on me but there is always that wondering-why?   Are they checking in to be nice or because I’m dying of cancer.  What are their true intentions?  

But when I tell you what hurts the most is knowing that I have been there for people time and time again-and then to feel nothing.  I sound incredibly selfish when I write this and I feel horrible even thinking it  but here it is-knowing I have tried to help through struggles of parent hood, friendships, love. This is such a hard topic to cover.  I have had the best set of friends that have stood by me.  Loved me when they just met me.  Stood by me  guided me brought food, laughs, joy to my life.  It’s been crazy that way.  It’s a hard thing to describe   It’s a painful thing to describe.  I don’t want people to think I am selfish or ungrateful.   I am so grateful for my friends I have met along this journey.  

But there are some friends I wish could see things from my point of view and a little softer then how I see it.   

So now I know this really doesn’t make any sense.   But this is what my brain looks like when I am switching pain medications.   It’s been a rough road   

I’m hopeful tomorrow will be a better day.  I’m hopeful the shaking will stop, the pain will decrease and I’ll have a nice little fanny pack with my pain pump to tote around with me   I’ll have an emotional support beverage, emotional support bag and emotional support fanny pack 🤔😂