results

good news for today.

the biopsy came back benign.

yes.

love that news.

i missed the call and had a voicemail and i was nervous to hear it.

so i took some deep breaths and then listened.

i love good news on a voicemail.

super thankful for that.

it was welcome news after a long night.

3am leg and foot cramps. in both feet. at the same time.

at one point, i was laying on the floor of my bedroom with barrett trying to hold ice packs on my muscles to get them to retract as i kind of flailed around through the pain.

about 30 minutes later, the spasms subsided and i was able to get a little bit of rest before the day was really suppose to start. ugh.

the nurses had told me that tapering off steroids would eventually make me feel like i was hitting a wall and i would feel kind of lethargic and really, really tired. they were right. the drop down of the steroids this week has hit me like a ton of bricks. i feel like i am even typing slow at this point. we have some snails that show up in our yard each morning, i am pretty sure that they are congregrating here because they think that i am one of them. seriously.

but all of that said, tomorrow is friday. so i am loving that. a weekend is ahead. camp outs. sleeping in. reading. working on photos. checking out a kids movie we have been excited about. probably eating some popcorn. checking out a farmers market. drinking some green tea. and oh yeah, unpacking boxes.

i hope that you all have a great weekend, go out and do something fun. that is what weekends -- and really every day -- should be all about.

make it a good one peeps.

i plan to.

long day

today was a long day.

i was in seattle at 7am to get some work in before my blood draw at 8:15.

then right to the office for a full day of work.

my liver levels are down again this week, all within normal range except one that is just on the border. i will take it. i get to go down 10mg of steroids starting tomorrow which is good. hopefully the trend continues next week. happy with that news today for sure.

on friday night i noticed a bump on my right leg.

i called my derm's office bright and early this morning and he got me in this afternoon. he has always told me that if i notice anything to call and he will get me in asap. and he always does. i love that guy.

in looking at the bump, he thought that it was going to be some tissue build up and nothing to be worried about. so that is good. but we biopsied it anyways because as we all know, better safe than sorry. so, a cut in my leg and stitches. i should get the results this week, he will call me so the results will come whenever he gets them, then back in two weeks to get the stitches out. since he seems pretty comfortable that it will be ok, i am pretty comfortable -- minus my sore leg of course.

then i got my schedule for the next month or two of appointments. if i taper down off of steroids over the next two weeks, it looks like treatment may start as early at august 22nd. a scan will be in there again as well. so that is quicker than we had talked about but it seems like the timing may be what my oncologist thought it would be if i can get off the steroids in about two weeks. so we will see.

so that is the latest and greatest. good bloodwork. liver behaving. stitches in my leg. hoping on good biopsy results. facing the reality of switching from steroids to treatment in the next month.

hence, the long day.

but before this long day, in the last week, life has been keeping me busy with all the things i told you that 41 and i were going to do. we have had dinner outside most nights. we read the light between oceans (so, so good!) and started reading the rosie project (loving it!!). we have hung up art in our house, unpacked some boxes. got my craft room in pretty good shape. got some happy mail sent at the post office. had tickle fights. saw a movie, ate some popcorn. had camp out nights. dinner with friends. sleeping in. had some dates with the hot sauna to sweat out toxins and have 30 minutes of solid reading time. watching malena ride her bike around the neighborhood. listening to her laughter while her and a friend have a play date. watching some good games of twister go down in our living room. and more. lots of good things.

i hope that your weekends were good ones and that your weeks are getting off to a great start.

and if you come across some cold ciders, i am begging you, have at least two for me please. xo

lower

today was bloodwork day, pretty much all mondays for a while are going to be bloodwork days.

today's tests showed that my liver levels have gone down in the last week. thank goodness. one of the two levels we are watching closely is back in normal range (woohoo!) and the other is still above normal (wah wah). so, i will drop down 10mg of steroids (woohoo!) starting tomorrow and then we will see how the liver levels are looking next week. if i am lucky, i will get to drop another 10mg starting next week (fingers crossed).

if all goes well (fingers and toes all crossed), i might be off steroids by the middle of august (i can only hope). i would then take a couple weeks off from all meds (what would that even be like?) and go in weekly for bloodwork to make sure that my liver doesn't go crazy again (it wouldn't dare, would it?).

if my liver stays in good shape (c'mon liver), then we would start treatment again in early september. we would do another scan (cue scary music) before i would start treatment to make sure that we had the latest and greatest baseline (here is where we hope for tumor shrinkage) before treatment started. then we would start one drug again on an every two week cycle. we would see how that goes (we know it is going to go well, right? right.) for a while before we decided to see if we could introduce the second drug back in again at a lower dose.

so that is current plan without really having a definite plan since my liver sometimes (obviously) likes to think all on its own. so we shall see. one pill at a time.

in other news, day one of 41 was good. i stuck to my word of being more intentional with my time. i listened to four podcasts instead of listening to the radio. i spent time exploring my yard (while pulling some weeds that apparently felt like my yard was a good place to call home) and took the above picture. the hydrangeas were looking beautiful after an earlier summer rain, and i looked down and saw the little yellow heart leaf and thought that it was pretty perfect. a good sign for the day for sure. read in my book for 30 minutes while in my hot sauna appointment. all good things.

as i focus on all of the things that 41 and i are going to do this year, there might not be a blog in the coming weeks every single day. don't worry, that doesn't mean anything is wrong, it just means i have no news on my end and i am reading/crafting/creating happy mail/spending time in our tub/playing with kiddo/exercising/napping/unpacking/eating dinner outside or one of the other million things on my list of things to do/enjoy.

i hope that you all had a good monday.

41 and i had a good one together.

i am hoping for a repeat tomorrow.

dear 41

dear 41,

well, i guess it is you and me for the next 364 days, it was good to meet you today for the first time.

i intentionally brought you in pretty quietly this year, seemed like the right way to do it -- easy and gentle.

i am super thankful that you are here, and as i do every year on july 17th, i thank my lucky stars i get to be a year older and get another trip around the sun. so, so thankful that you showed up and i get to see all that you will bring.

don't get me wrong, you scare me quite a bit. you are coming in and bringing with you a lot of joint aches, sore muscles and legs, chipmunk cheeks that are so swollen due to the steroids, and other frustrating issues.

but you also bring me hope. that treatment will work. that the tumors will not continue to grow. between you and me, if you bring a time when the tumors shrink i might designate you one of my most favorite years, and i have had some really good ones so you would be in excellent company.

but mostly 41, i am looking forward to intentionally trying to slow down with you. hopefully to catch my breath a bit.

to spend more time in my craft room working on our family photo albums. sending happy mail to family and friends. this last run of time since surgery has seemed to have stunted my drive and ability to be creative, and i am going to work really hard to bring that bring in your year. i miss making cards, and working on photos, and sending happy mail. i miss it in my core. so that is going to be a focus for you and me.

i plan for us to read a lot of books, i am pretty excited about the two that we just picked up from the library today. already 30 pages into the first one and could probably stay up all night reading, but as we both know, we would be in seriously big trouble with my big brother (just fyi, i think that he might be tracking our sleep patterns with gps;)).

i am excited for us to tackle the continuation of the unpacking in this new house, so that we get to a point where we can be in any room and not see boxes. to see our art on the walls. to have it feel totally like home.

i plan for us to get back to exercising on a regular basis, swollen legs or not. we might not be running any races soon, but we can get out and starting putting some miles down. i know, it doesn't sound like fun right now (and it probably won't feel like fun right now), but we can do it. i know we can.

we are going to intentionally make plans to have family and friends over, for dinner, for drinks (and i know you can't wait either for when the day comes that we can have a cold cider), for ice cream -- whatever. to have this home filled with laughter and fun on a regular basis. so get ready for some fun and some planning, we are going to make some good stuff happen this year. i already have some good plans underway.

i also plan on us taking some naps. because let's be honest, you know that you love them too.

we are going to spend time outside working in our yard with the beautiful flowers and plants, and learning about how to take care of them since we have some kinds we have never had in our yard before. it will be a good chance to learn something new and watch the flowers bloom through the year. an intentional way to pay attention to what is happening outside of these walls instead of just hastily walking by them on our way to and from wherever we may be going.

we are definitely going to eat dinner outside as much as possible this summer. i bet you could already guess that one since it happened today on our first night hanging out together.

there are going to some fun trips, some short, some a little farther. i can't tell you everything we have planned on our first day, so you will just have to hang tight to see where we might go.

i know that we will likely have some tough times together 41, all years have tough times. but i also expect that we will get more than our fair share of really good times too, and i will embrace those with you as tightly as i can.

you are an important year to me. all years are. but you are coming in with a lot of questions in the air about what exactly you may bring my way. so i am going to trust with everything that i have that you have a lot of good things planned, and you will kindly and gracefully hand me off to 42 next july 17th. i would forever be in your debt and will remember you always.

so i hope that tonight you bring me some good dreams and a restful night.

you came in calmly this morning with no muscle spasms and so i am pretty much in love with you already.

here we go 41, it is you and me for a long time to come. i know that we can do this. i will be with you every step of the way, and you do the same. we need to have each other's backs, it is the only way we are going to make it.

goodnight friend. see you bright and early.

let's do this.

anywhere i go, you go.

love, me

6

"there are some things you learn best in calm and some best in storm"

(willa cather)

6 years ago today i got the call with the diagnosis.

6 years.

crazy to think about all that has happened in that time.

as always, this day brings up about a million different emotions and tends to throw me off a bit in the days leading into it.

it feels like it carries the weight with it of all that has happened since i got that fateful call.

one surgery to remove the melanoma from my collarbone.

one surgery on my right lung.

one surgery on my left lung.

20 high dose treatments of interferon.

144 doses of interferon over the course of a solid year in my arms.

one dose of the combined drugs.

countless CT scans.

countless MRI scans.

countless PET scans.

more contrast than i care to think about.

millions (literally, i think) of needles in my arms to draw blood.

nausea meds.

pain meds.

steroids.

antibiotics.

oh, and then the side effects (and we all know that there are plenty of long blog post all about that) and the recovery periods.

and the scanxiety. and the stress. and the emotions. and the tears. and the pain. and the sadness. and the anger.

so it is now 5:51am on this day and my day started with excruciating muscle spasms in both legs and feet at the same time around 5am. not a fun way to start the day.

but looking ahead from this moment, the day will be good.

my family is in town. we are going to a baseball game (c'mon mariners, let's do this). my mom has made my favorite red velvet cake.

if i could just drink and have a cold cider at some point today it would pretty damn perfect. damn you steroids and liver, i really - really - really - really miss having a cold cider.

there is so much to look forward to on this day and all of the days to come.

july 16th.

6 years in the fight.

many more years of fighting to come.

right?

right.

play ball and stand up to cancer

though i was not home this year to watch, the annual mlb all star game where the players and the crowd stand up to cancer is always a powerful moment. to see everyone in a stadium for a  moment stop and pause for those that are in the fight or have finished their fight is very powerful. at least for me it is. so i found a link to be able to watch it tonight and loved that "fight song" was sung. that seems pretty perfect.

the annual stand up to cancer event is on september 9th this year.

you know you can count on me to remind you of that as the date gets closer.

xo

where we go from here

so a little more on the results.

obviously, my dream scenario would have been that the tumors had shrunk -- a total dream scenario would have been that they were gone.

but that wasn't in the cards for today, i guess that news will hold for a date to come.

the worst scenario would have been that the tumors had increased, i am beyond thankful that they did not grow. although mentally it would seem like the one dose had been been doing something to work on the melanoma if the tumors had shrunk, it may very well be that the drugs were working and that is why the tumors didn't grow. we won't know that. one of the million unanswered questions that comes from cancer, the not knowing the why or what ifs or the how comes.

but here is what i do.

tomorrow morning i go down one dose on steroids. my liver levels are still higher than normal and need to keep coming down. i will stay on this level through next monday when i will go back in again for bloodwork. we will take it from there and see if we can do down again or maintain at the current level. i am going to stay on the antiobiotic because i am having to stay on the steroids for so long which compromises by immune system and getting pneumonia is a threat. the antibiotics help to make sure that doesn't happen.

when the time comes that i get off of the steroids, we will take a few weeks off to make sure that my liver doesn't start to have issues again.

then we will restart treatment, one drug at a lower dose, to see if my body can tolerate it (let's all start sending my body vibes now so that it is prepared to kick ass again when that time comes).

so, in the meantime, i will continue to take the meds i am supposed to take. i will continue to live with the side effects. i was walking downtown today and my legs hurt and i realized that i have already started to forget what it feels like to not hurt anymore. that time before treatment started when i said that it was the best i was going to feel again was right. but if all of this gives helps kick melanoma's ass then it is worth it. all of the pains. the aches. the muscle spasms in my legs, feet, and now my hands. all worth it if we can kick these tumors where it hurts the most.

so at the end of this day (which seems like a marathon since i barely slept at all last night per usual on result nights), i am feeling thankful. the tumors didn't grow. that is something to be super thankful for. i have awesome doctors who i can't imagine doing this without. i am surrounded by my great family who i adore, and a village of friends (some i know, and some i haven't even met in person but have become friends nonetheless through this crazy cancer journey), and i am supported every day in a million different ways to keep going with this fight.

so onward i go.

thanks for coming along today.

and for all the days to come.

and to be clear, i plan on a hell of a lot of them, so plan on sticking around with me for a while.

xo

results

scans showed no change from last scans --- good that no new spots/growth in tumors, would have loved to see them decrease. will
taper steroids one level starting tomorrow. bloodwork again next week and every week until can get off steroids (likely a few more weeks). then take a few weeks off to make sure liver is ok, then start treatment again of one drug at lower dose. keep sending the love;) xoxo

that time again

monday at 10am will be go time.

i will check in for bloodwork and then at 11am we meet with my oncologist to get the results from the scans on friday.

on friday, my closet was still packed up so i couldn't find my usual "f&ck cancer" shirt that i wear on scan days. but i had just ordered this "my bravery shirt" before we moved and could find it, so i decided that was a good sign and went with it and it did make me feel braver.

i was hoping that they wouldn't use my bruised arm/vein for the iv, but since it was the best vein at the time, they went with that one. and it hurt like hell. but they got it in on the first try so that was good, it just was really painful to have the iv in my arm for a couple of hours.

for the actual scan, they had a new machine that they are using which was kind of interesting to check out. and the best part is that the new machine is in a room that has --- wait for it, wait for it --- actual windows!!! i could see outside. how awesome is that? now they still had the stupid ceiling tiles about the machine, but i just had my head turned towards the windows when i didn't have to lay exactly still and looked out at the blue sky. that was a pretty great surprise for scan day.

after the scan wrapped, i waited out my 30 minute waiting period while having a couple of snacks and then headed to get some green tea in the cafeteria before heading to my counseling appointment. as i walked out of counseling, i remembered that i had forgot to bring my cinnamon bears with me which is a superstitious routine for me on scan day. luckily, the gift shop had some so the crisis was averted. whew!

the rest of the day i felt ok and was able to stay upright and work on things around the new house. we also said our final goodbye to the old house, i am sure that there is a blog post coming up about that soon but i am too tired tonight to write that one out.

our weekend has been good and distracting, we worked on unpacking and projects on the new house all weekend which kept my mind busy for the most part instead of having a ton of down time to dwell on tomorrow. which is a good thing.

as always, i will give an update tomorrow after we get results - should be sometime by early afternoon.

thanks for all of the love, prayers, mojo and vibes -- i will carry them with us tomorrow as head over to get the news.

anywhere i fight, you fight.

let's hope we get some good news in the fight tomorrow.

we could sure use it.

xoxo

ps) scarlett -- if you wouldn't mind, leave me your email address in a comment and i will delete it after i get it:) tnx!

scan day

scan day.

i check in a little after 10 for my iv (come on veins, cooperate please -- my right arm is still so bruised i think that i am going to get an iv in my left arm or one of my wrists today so that should be pretty exciting (in opposite land), and then go into the big machine about an hour later.

i then meet with my counselor (it definitely takes a village to make it through cancer, that is for damn sure) which will be good as always, and by that time, i will already be headed downhill and ready to head for home.

this scan, as they all do, feels huge.

will the one dose have done something? will it have at least kept the tumors from growing? will they have shrunk? is something else going on that is making my liver going out of whack?

monday we will know.

the best i can do for now is get through today, take some deep breaths, and hold tight to hope.

so i am ready to pick up the boxing gloves, head in and get this done.

time to get back into the ring again for another important round.

i hear the bell ringing, time for me to get ready. i know that sound so well by now.

thanks for all of the love, prayers, mojo and good vibes. as always, i carry them all with me wherever i go, my entire family does. i could not imagine going through this without a team backing me the entire way, i am so incredibly thankful for that on each and every day -- and even more so on the tougher days like today.

anywhere i fight, you fight.

here we go again. let's do this. xoxo

the shit and the joy

well this week definitely is including both of those.

the move into the new house is going well. all of our stuff is moved into the new house, most of it is still in boxes or scattered (literally) throughout the house. but we are slowly but surely making progress. we had a bunch of projects we wanted to get done (painting rooms, bead board up, chair rail in one room, a barn wood accent wall) so we are moving our way through those and packing one box at a time. we will get there, just like all things, it will take some time.

but being in the new place is fun and it is tough, we all already miss our old place and these transitions are really hard between the old and the new. for the little kids and the big kids too. there have definitely been tears this week and i know that there will be more as we haven't yet said our final goodbye to our old house. that is going to be tough.

but we know all about things being tough.

i had bloodwork yesterday (needle went in on the first try but left a whopper of a bruise on my arm -- the give and the take). my liver levels were down slightly from last friday which is a trend in the right direction for sure. i was happy about that.

i am going to hear today how long we expect me to stay at this current level of steroids. i am not even going to take a guess at that one. i am feeling ok, definitely not great. the weight gain makes my joints really achy. i go from feeling a high level of energy (like can't sit still) to really, really tired. so i feel a bit all over the place, but after all of this time i am getting used to that just feeling like the current ride that i am on. i haven't had a spike in fevers for over a week now which is good, hopefully the antibiotic is doing its thing. from the fevers i got the worst (literally the worst) cold sores on my mouth which are so painful. they kind of look like mountains -- so if you think you see some new mountain off in the distance when you are out and about today, nope, not a new mountain, just my lips getting the absolute crap kicked out of them.

friday i will have scans, and monday i will get the results. we will check to see the status of what is going on with my right lung.

if we find that treatment is still our current game plan (i.e., looks like tumors on my lung have stayed the same and/or increased), then i won't be able to start any treatment until i am off the steroids which will be a while.

so that is the latest that i know of now.

one day at a time.

so this week is holding the shit and the joy together. being in our new place. starting to develop our new memories there. malena having play dates with her buddies. getting to hang out with our neighborhood friends to watch the fireworks on the 4th. unpacking our things and holding so many memories and pieces of our lives that are so important to us, and finding the perfect place for them in our new house. realizing that some things don't need to be held on to any longer and letting them go on to a new owner that can use them and love them. taking a lot of deep breaths. drying tears. watching either others cues for when it is time to take a break from unpacking boxes and just play monopoly instead. working on the "we have to get this done at the old house" list while simultaneously working on the "we have to get this done at the new house" list.

i hope that you all are having a great week and had a good 4th. those milestone days are always a mixed bag for me with a million emotions around them.

we got to see a great fireworks show and it was amazing to me that the 4th had rolled around again. this last year, as they always do, went by in a flash.

time always, always does.

which is why it is so important to take it all in.

i plan to do that again today.

box by box. moment by moment.

one unwrapped piece of our lives at a time.

and the hits just keep on coming

so my liver levels have stayed essentially the same since monday.

i guess the good news in that is that they didn't rocket up higher.

the bad news is that since they didn't go down, i have to increase steroids. again. (does this seem like the same post from monday? yes, it does to me too. ugh)

so now i am just about back to where i started on the steroids at the start of the month.

tomorrow morning i increase them yet again.

which will mean that i will be on steroids for even longer now.

i am also now going to have to take an antibiotic as they are worried that i will get pneumonia from the fevers i continue to be having. and wouldn't getting pneumonia just be about the icing on the cake at this point? yep, pretty much.

so that is the latest.

more drugs.

and hopefully on tuesday when i go in for bloodwork the liver levels are going down.

let's hope.

in the meantime, we are going to continue to move into our new home. we will have family around for the weekend. i always love that. i know there will be laughter. and excitement about this new start. so there is a lot to look forward to.

and i choose to focus on that. in the midst of not feeling great, joints that ache, and my temper that feels like it needs to be put on a very short leash, there is so damn much to be thankful for.

and i am so, so thankful.

happy saturday peeps.

anywhere i unpack, you unpack. and we are going to do a lot of that this weekend;) xo