not a whole lot in the way of updates for finishing this cycle. it's the halfway mark, though, so that's quite exciting! it's hard to put into words how excited i am to shed all these restrictions and get back to life. my wonderful nurse told me to make a list of things i'll do when i feel amazing again...i'll post it here when i get more things on the list. i was always hesitant to make a 'list of things to do before i die' because i didn't want to face my own mortality. well, that's been done, and now the name of the list seems inappropriate...i'll call it my 'list of things to do while i'm living', which i think more accurately reflects my new perspective on life. and, as excited as i am to get back to life, i'm excited to get back to life because of this experience and everything it's given me...i have a stronger sense of purpose for being here, and i'm so excited to see where life takes me next.
also, because i know many of my fellow hodge warriors follow this blog, i'm going to take a little time to add my new found wisdom on managing side effects. it seems my sole side effect of ABVD has been nausea. so bad at first that i'd end up in tears just because i was so overwhelmed. it was the side effect i feared most, and for good reason...no one ever deserves to feel that sick. for the first four treatments i added medication to medication to try and control the nausea, and it got worse and worse with each treatment. until treatment four, when i asked the lymphoma expert at dana farber to give me something new to try. basically, what it melted down to was that a lot of the medications do the same thing, and so they have no additional benefit, and in fact, may make it worse because they each have their own side effects (zofran headaches, anyone?). i also decided i may have been dehydrated, so i figured i'd add water to my anti-nausea line up (it can't hurt, right?). since then, i've had two treatments with only the anti-nausea medications in the IV drip and one additional medication at home, as well as three liters of water a day for five days (day before and three days after). it might be chance, but i have had significantly less nausea. i think i'm on to something...perhaps less really is more, and drinking lots of water is the best and easiest thing to do. i got so terrified to wean back on medications fearing it would make it worse...until i realized i couldn't keep up the way it was going, so i'd try anything. i'm so glad it worked...here's to hoping it keeps working.
and, in case anyone is wondering...75 days until the end of this chapter of treatment!
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Hang in there Grace! Congrats on getting to the halfway mark! :o)
ReplyDeleteMy son was like that...very sick for almost a week. They changed his medication to something that MD Anderson has come up with...she said it's actually a cocktail of 3 medications in a capsule that's taken for three days. It really helped. The down side...he sleeps for hours at a time.
ReplyDeleteYou're halfway there!!!