103

two days in on the higher dose steroids again.

the aggression/anger is back full force (that did not take long) and it actually feels harder to control this time around. but i am trying hard. really hard.

i gained 5 pounds of weight over night on the first night i took the higher dose, and a lot of it went to my legs and joints. the aches are back.

last night at about 8pm the tidal wave of nausea came back. and i was down for the count for the rest of the night. i had a 103 degree fever throughout the night which finally broke at about 6am. i also had charlie horses again in both feet which is so painful. so it was a long night and i barely slept. which made today a really long day.

but before the nausea hit, we took the picture above. at our new house. it is finally all ours.

we are super excited to start new memories there. at the same time, it is going to be hard to say goodbye to our home. so i am feeling all the feelings for sure about this move. but i think that this new beginning will be really good.

tomorrow i go in for bloodwork followed by a doctor appointment to talk about the results. they also want to talk about these nausea/fever episodes i continue to have to see if we can figure out what is going on.

i will do a quick update tomorrow/saturday with what we find out tomorrow.

thanks for all of the ongoing love and support.

you all are the best.

happy friday. xo

angry and toxic

well it has been an interesting couple of days around here.

on friday as i was driving home i got hit with another massive tidal wave of nausea. i could barely make it home.

by the time i did, i was shaking so bad from the start of the chills coming on that i needed help to be able to get into my pjs. my teeth were chattering so bad that i was pretty sure that they were going to break off at the gums. i quickly spiked to a 103 fever and was in absolute misery and out of it for the rest of the night. at some point during the night the fever finally broke. my clothes were soaking wet and i had to change again due to the fever and the sweats. i also got charlie horses in my legs and feet throughout the night which was really not fun at all since i already felt like hell. a long night.

by the time later saturday morning rolled around, i felt better - but like i had got the absolute crap kicked out of me. it was a low key day for sure. sunday was the same, good but low key.

today i had bloodwork. and my veins were a pain in the ass again and they must have moved that damn needle in my arm no less than 35 times to get the line in. not their fault because my arms have not been cooperating the last few weeks. i think they are tired. i totally get it.

and when they called me back into the room, the news we got is that my liver levels shot up way higher than they were last week.

pretty damn devastated.

again.

like as soon as she said the words and i saw the numbers, i could feel the tears welling up.

this isn't supposed to be happening. i was originally supposed to be off the steroids tomorrow.

now i am going back up on the dosage. which means i will be on them even longer because i will have to go back down to the level i am at now eventually. and then go down to the next dosage before they will take me off.  frankly i have given up even wondering when i will get the hell off of these drugs. it seems pointless to invest any amount of hope in dates anymore. it just sets me up for disappointment.

so tomorrow i increase steroids again. cue up all of the side effects that come with the increased dosage again.

then friday i go back in for bloodwork to see if the liver levels are trending down. and then i go back in on tuesday. and we will see if we go with scans on friday.

one of the blood tests can be a tumor marker and it shot up higher than the amounts the liver levels did. but we aren't going to jump to conclusions yet, it could be that particular marker is reacting to the steroids in the same way that my liver is. but i won't say that it doesn't scare the absolute hell out of me. combine that with the fact that i went through two days of nausea hell and high fevers out of nowhere last week and it doesn't make me rest easy. at all. i can tell you that.

so i feel really sad.

and i feel really angry.

and i am tired.

and i don't feel like picking up any gloves. i don't feel like putting a brave shirt on. i don't feel like cheerleading for myself. i don't feel like looking for the good in this. i don't feel like thinking this will all work out. i don't feel like getting my head in the fight.

i just want to sit in my anger and sadness for a while. and hang it out with it for a while.

some days that is about all i can do as dark falls.

and i deserve to feel angry and sad. and for to be ok. and for me to not make that better for myself.

i am 40 years old with a 7 year old girl.

angry and sad doesn't even actually start to capture it.

f*ck cancer.

the lone star state

our trip to texas was so, so good.

we got to check out the magnolia silos and that place was as awesome as we expected.

the market was ah-maz-ing and i am personally proud of myself for only shipping one item home that i couldn't fit in my luggage even if i tried;) a wall in our new house will thank me when the piece is hung up above the fireplace. i could have wandered around through the shop all day, it was like continuous eye candy with the displays, the products, just all of it.

i was kind of in creative love there. so fun.

oh, and as you can see below, i found an "a" for my craft room in the pile of old letters they had on sale that day. major score for this kid. as you can see from the pic, i was just a little bit excited.

in addition to drooling over the silo grounds (including the awesome seed and garden shop that my mom, nerd and i were the first people in on friday and had it to ourselves for 15 glorious/super fun minutes), we checked out the good local food at the food carts there. yum.

for those of you that are "fixer upper" fans, we also went to clint's store  where his shop is and it was also so good (aka i kind of wanted one of everything). i probably walked around the store 5 times just to see everything he had. the shot below of all of the wooden numbers/letters was from his shop. oh man, letters and numbers get me every time. there was an "h" that just jumped in my hands so i had to bring it home with me. and maybe one or two other things that i had been eyeing from some previewing on the website before we flew down;)

we ate really good food. we checked out great shops with combo of new items and antiques. we ate ice cream at a local creamery (two nights in a row) and from a local ice cream truck (so good). we checked out the iconic suspension bridge across the river that runs through town. we swam at the hotel pool for hours and malena was in swimming heaven. our mermaid could stay in the pool all day long if we let her. we checked out local coffee shops to grab some green teas. we went to the saturday market and it was such a good one. they even had gluten free crepes, and yes, of course i had one. and i savored every single bit. and they had gluten free macaroons that were so tasty. and yes, of course i had one. ooops, i mean two. we put our feet up and relaxed. we read. we slept well.

it was all so good.

so thankful that the fates were kind to me and i felt good enough to go on the trip, and that the side effects were manageable for me while i was there.

i would go back to waco anytime.

anyone want to go?

i can be packed in 15 minutes.

seriously.

happy weekend y'all. xo

on the other side----

whew.

think i am officially on the other side of the hell that was the last 24 hours.

definitely low energy and tiiiiiiiiiiired but i can walk and talk thanks to the nausea and fever going away so i am pretty happy about that.

had a long work day and then ended the day with "finding dory" and some green tea and popcorn with the other two hansons and our buddies.

good times.

i am now going to bed to get my rest up for another day, my big brother will be happy about that (although i can hear him already telling me i am late since it is past the 10pm curfew he tends to focus on).

but before i do, one thing that i saw earlier and LOVED (capital letters so you know this is big) this week was this post by elise. she had reposted the canvas on instagram and i instantly knew that i needed to make it. because there are definitely times when i think that i can't do this, but then i immediately think that i am going to do it anyways. because there isn't any other option now is there? we all know the answer to that. so it will be a great reminder to see each and every day. might be the newest piece of art that i add to the new house. definitely on my list of to do's as soon as we get settled in.

and with that, i am going to make my big brother happy (or happier than he would be if i rallied to bed at 11pm) and call it a day.

we are half way through the week peeps.

yes, we are almost there.

we can do this.

i know we can.

plans change

i will definitely be writing about our great trip to texas, but am feeling really sick today and can't write about a fun trip when i am feeling like hell.

either due to meds or a bug, i am down for the count today. last night i got hit by a massive tidal wave of nausea to the point that i could not move. had a fever throughout the night/into this morning, and feel like i just got my you-know-what kicked. but i think that the fever has finally broke so that is good news.

i had bloodwork yesterday and my liver levels are up again above normal levels. not as high as they were at the start of the steroids, but a little bit above the normal range. which is frustrating since the levels were all good last week.

so that means i don't get to do any further tapering of the steroids this week.

so that means i won't get off of the steroids next week as planned.

so that means i will be on the steroids longer than we hoped.

which is pretty frustrating for me.

but it is out of my control so all i can do is keep taking the steroids, dealing with the side effects, and hoping that next week my levels come back down again.

we are going to do scans on july 8th. we will then get the results on july 11th. pending those results, we may start treatment on the 11th.

so hopefully i feel better soon and feel like writing about something much more fun than steroids and fevers.

hope your weeks are off to a great start. xo

down time

" and every day, the world will drag you by the hand, yelling "this is important! and this is important! you need to worry about this! and this! and this!" and each day, it's up to you to yank your hand back, put it on your heart and say, "no. this is what's important."

(iain thomas)

i am going to take a couple of days off of the blog this week.

i am headed out on a quick girls trip and am looking forward to some down time and just getting to be on an adventure for a few days with my mom, malena, nerd and my niece.

we will see how my body cooperates with me over the next couple of days, hopefully it plays nice and is not too much of a pain in my you-know-what. i won't hold my breath but you never know.

i am excited that i am feeling well enough to make this trip. when i started treatment, i hoped that i would not get so sick that i would have to cancel out. so i am thankful that i feel good enough (all things considered) to be able to make it and kick off our summer with some fun.

for those of you peeps who watch the hgtv show "fixer upper" we are heading to waco to check out the magnolia silos and explore a little bit of texas. we are pretty excited as we love that show and decided earlier this year when i was recovering from surgery that we would make the trip happen. because we knew it would be fun, and that the only reason we needed.

have a good rest of the week y'all. xoxo

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.