Sunday, May 4, 2014

Coming out of my drug induced sleep haze...

Getting the port definitely falls into the category of "be careful what you ask for".

They did the surgery at UC in the same day surgery unit. The nurse who prepped me said it was where they did surgery for "healthy patients". (That comment was the highlight of my day!) The big surprise was that on top of the incision in my chest to insert the port they did an incision in my neck and then catheterized a vein (put a tube in it down to the port).

I woke up from the surgery and it hurt like heck to swallow. They thankfully quickly gave me more pain meds and wrote a script for me. It was yesterday before it did not hurt to swallow, talk, move or eat. Today I am feeling much better as both the port and tube seem to have settled into my body more. I am very glad I did not have chemo on the same day as the port surgery!!

The pain meds have helped but they have also kept me sleeping most of the last few days. I am going to try and start to taper off them today but we'll see how that goes. I cannot lift anything over 10 pounds, or swim or take a bath for the next 6 weeks but otherwise soon should have mostly recovered for this first step in the process to get well.

On Thursday afternoon when the girls came home Margaret kept leaping on me, hugging me, and generally forgetting what had happened. I asked the girls if they wanted to see it and they answered together with a resounding "No!". They have seen gotten glimpses of it and Margaret is clear it looks "creepy". She is definitely right on that. The stitches all dissolve and there is a clear steri-tape over it that will dissolve over time. It is great that I don't have to get stitches out, or change dressings, but it is very visible and not the most attractive.

So I am more, or less, ready for tomorrow and hoping I don't have a very bad reaction to rituxan. Also, people have asked about NIH. I don't have an official report or recommendation from them yet. We agreed with them the right first step was a month course of rituxan. I am assuming I'll learning more tomorrow or next Monday on what the NIH tests showed and what they recommend going forward.

Thanks to everyone for the support in so many different ways!! We all really appreciate it.

1 comment:

  1. Hey Beth so sorry you are sick. Myles and I wish you the very best of luck fighting this thing!