sunday night my feeding line got an obstruction in it somehow so we ended up going to the ER at midnight to see if they could work some magic to get the line free. luckily they were able to and we were able to come back home around 2am to start the feeding. that was a long night with little sleep and then we had to head into work. grueling.
today were my follow up appointments.
i wanted to hear that we could take out the feeding line.
that is not what i heard.
we met with the nutritionist and we are going to touch base on thursday to see how it is going. i am going to do one less pack of formula starting tonight and try to increase what i am eating through my stomach. my oncologist anticipates we will do feeding through the weekend and then decide on monday if we pull out the tube and i go to stomach feeding only on my own again.
we are going to cut down on the steroids starting tomorrow to start the taper off of them and are going to try to alleviate some of the other nausea drugs and see how i do. i will probably be tapering off steroids for the next couple of weeks.
we are not going to do an infusion as scheduled on monday since i am still on the steroids. we will do bloodwork, check vitals, and make a decision on the feeding tube. if it can come out, they can pull it out on monday while we are there. that won't be fun but at least it will be out.
i am feeling very frustrated and tired at this point. the feeding tube is a lot of work and makes it hard to maneuver at night and sleep because we have to be up multiple times. i am tired of being in the office with tubes coming out of my nose and across my face. i am tired of the looks that i get out in the public which range from "maybe i should stay far away from you to i feel very sorry for you". my legs are both incredible swollen from the steroids and so they are uncomfortable and walking with the cane continues to help, i am probably leaning on it more now due to my legs hurting so much than when i was just leaning on it because i was too weak to walk on my own without it.
i guess i would say that i am sick and tired of all of this that has been going on for now over 5 weeks heading into 6 weeks. basically a month and a half of feeling like shit and being limited in what i can do, what i can eat, what i can do for myself, living my normal life, etc.
so i am going to be in a funk for a few days, and that is fine. i deserve to be. these weeks have been hell and at some point you just have to allow yourself to be angry, sad, frustrated, etc. and that is where i am. i don't feel like putting a positive spin on it or looking for the bright side. this is a rough patch, i will come out of it at some point like i always do. but for now, i choose to be in this space.
thanks for all of the support as we continue to move forward. i do really appreciate it and it helps to know that we have so many that are supporting us through each day.
i hope that your wednesdays are good ones. please keep those vibes going to mary, beth, and kim - they need them too.
anywhere i fight, you fight.
and as always, there is certainly more fighting to do.