Monday, June 13, 2016

next steps

i had my bloodwork appointment today and we got good news.

my liver levels are back to normal.

to ensure that they don't spike again, i will start decreasing the steroids tomorrow with the goal to be off of them by june 28th entirely if my bloodwork keeps coming back good.

i am more than ready to be off of the steroids.

they have been pretty unbearable to deal with. the aggression really started to kick in last week and it has taken just about everything i have to maintain a calm personality. it is crazy how much they have affected my personality and how hard i have had to work to override all of that and keep myself calm and not absolutely lose my patience and snap at anyone and everyone that has come in my path. because that is honestly what i have felt like doing in the last week. in addition to the aggression, i have had a ton of water weight swelling that has been super uncomfortable and has made walking really painful for me. it  really hurt to walk that 3 miles yesterday for the shore walk, by the time we got home, all i could do was lay down and put my legs up over the couch they hurt so bad. i am hoping that the swelling and the pain starts to go down as i start to decrease the steroid levels.

once i am off of the steroids, we plan to take another scan during the first week of july to see how the tumors look.

we will get the results of the scans on july 11th. if the tumors have not shrunk, we will start treatment again with one of the drugs on the 11th. if my body can handle the one drug, we may introduce the second drug back in again in the future but at a lower level. the goal will obviously be to get some amount of treatment but not at levels that turn my organs toxic again.

if the tumors have shrunk, we may decide to hold on treatment and see what happens in my next round of scans.

but at this point, i am happy to know that a) there is an end in sight to get off of these steroids that are making me crazy/miserable, and b) there is a plan for next steps with scans/treatment.

as you know, i do much better mentally when we have a plan - and so to feel like i have one again really helps me.

i am headed to bed to put my legs up on on the 5 pillows it takes to now sleep comfortably to get the swelling to go down at night so i can walk again in the morning. i just have to manage to get my legs up the stairs to make that happen.

thanks for all of the continued good thoughts and prayers and love that are getting sent our way. i really, really appreciate it and makes these days when i feel like hell and am out of my mind on these meds a little bit more bearable.

keep sending my liver those good vibes, getting the all clear to get off the steroids on the 28th is the next goal.

i am more than ready to make it happen.

No comments:

Post a Comment