Monday, March 27, 2017

it's out

today has been a long day.

we had a series of appointments this morning.


medication reviews.

doctor appointment.

nutritionist consult.

and then, the tube removal.

for the bloodwork, everything that we got back today was looking good. we will get my pancreas results back tomorrow, but are hoping that they are trending the right way since everything else is. fingers crossed on that one.

i get to drop some of the numerous medications that i am taking. we are decreasing the steroids a bit and hope to continue to taper those as the next couple of weeks go by. i will do bloodwork again for the next two weeks to make sure that things are trending in the right direction. pending how everything goes, i will have another round of scans on april 14th to see what is going on with the tumors.

although i have continued to lose weight which is not what is ideally supposed to be happening at this point, the decision was made to pull the tube as we had hoped for. the actual experience of it coming out was not pleasant, and i will spare you the details of what it felt like. but it is out, that is all that really matters. my nose is a mess inside and out, from the tape that has been on there for weeks (which took some of my skin with it when they took the tape off) to the inside which bled when the tube came out.

the goal now will be recovery. trying to eat and gain back weight so that no one feels the need for me to supplement with the tube again. trying to gain my strength back. trying to get sleep again. hoping my mind clears up a bit as the steroids are doing a mental game with me this time. i can't remember things. i can't track conversations at times. i get things confused. all of which is very frustrating to me, in addition to feeling frustrated in general due to the steroids and the anger tendencies they bring.

overall the goal is trying to just heal up in general all the way around.

it was around the first week of february that i really started to have issues and not feel well. it has now been about 7 weeks, and to be honest, much of the last 7 weeks is a blur to me as i was so sick the entire time. it is a very odd feeling to feel like you kind of lost 7 weeks of your life. in some ways it feels overwhelming to start putting life back together again and figuring out exactly where to start after so much time has gone by and there is catch up to do on personal life and work.

thank you for all of the support over the last two months. i really appreciate all of the love, prayers, and mojo that have been sent my way through all different kinds of ways. i have felt every aspect of it and it definitely reminded me that i am never alone in this fight.

also, thank you for all the vibes for beth and mary last week. beth got the best results possible and there is no new growth and she is going to go to scans in 6 months. yes!! mary's injection went as well as possible and she will go in for round 2 in april. go mary go!

please also continue to send all your good stuff to my sister-in-law kim as she continues to heal up from her surgeries and deal with the pain that comes along with recovery.

i will probably be a little bit quiet in this space for the rest of the week as i am pretty tired and exhausted, and am going to be putting my energy into recovery and starting to get my life back.

thanks for everything.

anywhere i fight, you fight.

the last 7 weeks have been one hell of a fight.

thanks for sticking it out with me.


1 comment:

  1. I'm so glad the tube is out. Wishing you nutritious meals and restorative sleep and quality family time as you heal!!!!