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