I was posting on Instagram yesterday and put hashtags and being nosey clicked them to see others relating to my situation. I found someone doing rituxan for ITP. She has a blog as well and I read some of it. She counted the days since her diagnosis and it made me think- I want to remember these things and I didn't for some reason. So I went back and decided to remember the day I got the call that my myelogram was cancelled because of a problem with my platelets. 66 days.
Yesterday was Thursday and that means dr day. Rituxan treatment number 3. Horrible. Horrible. Horrible.
We start of course with the usual 5 minute search for a vein. Found one- collapse. This continued 7 more times. 7. Then I began to worry because with each one I bled the thinnest looking blood and I knew it wasn't a good sign. I usually don't bleed from blood work or IV. Usually, well 66 days ago. We get it on my left wrist where I had it done the past two times. I'm still brusied from it.
Blood count - 83,000.
I know for most itp patients that would be amazing. But for me while yes I have gone way lower, I still need 100,000 at least for my myelogram. Plus, last week I was at 84,000. I know a difference of 1000 doesn't seem like a big deal but when your doing rituxan treatments along with prednisone and dexamethasone anything less then 85,000 is a disappointment. It also makes me realize that while I'm not one to need treatment unless I'm having a procedure done that maybe I'm becoming a patient who will need treatment no matter what. If it is so difficult to get the count up when it's not so dangerously low makes me think it is just going to progress and get lower. I'm ok with that. I've accepted how good it could be and how bad it can get.
Anyway... I start the Benadryl drip and get set in my chair. Full house today in the room so my mom decided to free a chair and go home. Last time as the Benadryl ran out my arm would ache. Start rituxan and it was better. Same thing happened. Although it didn't get better. It got worse. Turns out my vein was too small and weak from all of this and the force of the meds was too much. My arm hurt when my dr barely touched me. So we had to stop it and undo it. 3 tries this time and finally we get it in my hand. This is ridiculous. Viens, blood, liver, spine, immune system - I hate you 😒
I felt very out of it and dizzy the whole time. After I was ok. Mom and I went to the diner in town for lunch before I had to head back to work. Work went well. I did get the horrible headache though which is still continuing.
I went into this rituxan treatment plan thinking about 4 treatments is all I would need. My dr now says we don't know how much I will need. I understand. It's no ones fault but my bodies. I was looking forward to only one more though.
.... I ordered a book I found called Wish by Spirit. It is written by Joan Young. She has itp and wrote about her journey. I haven't started it yet but I hope it helps me understand more. I want to try to get Marqui to read it. I don't know if he will. I want him to understand all this. I still don't either.
I think I would feel better if I understood why all of this happens. To me. To others. What goes so wrong to cause our bodies to attack itself? Why does my body decide hey let's try to kill you!, I know we will never know. That's the hard part.
So much can change in 66 days. I wonder what will happen in the next 66...
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