again

i am writing this one while malena is in an appointment, trying to sneak in these times to write when i can because house to dos are happening at night and then i am too tired to write.

today was a long day and a lot of back and forth with my oncologist’s office.

may 12^th.

that is the day that i will start treatment.

another day for the record books.

my treatment days are going to be long ones for me, they will last for about 7-8 hours between bloodwork, doctor check in, the first drug being administered, the second drug being administered, and so on.

i got pages and pages of my appointments and schedule today (and that is for just the next 12 weeks).

honestly it is all pretty overwhelming.

i think after coordinating so much on treatment starting, now having a date that marks the inevitable countdown, emails with HR about disability coverage and trying to figure out what the hell i am going to do about work and leave and coverage, emails with nurses about side effects, i am feeling just kind of numb tonight.

i definitely don’t feel like picking up any boxing gloves, i can tell you that.

feels more like i got a sucker punch to the side and need a little time to take some breaths and heal my wounds.

so that is where things stand as of today. the date is set. the countdown is on. i have just over two weeks to get ready to fight like hell again.

again.

that word is so damn frustrating.

but i have no choice except to live with it.

so whether i like it or not, “again” and i are in this together for what will be the hardest and longest bout of them all.

thanks for all of the continued love and support – it really means so much to us.

now please go do something fun on your wednesday.

ps) because even on rough days, there are things that can make you laugh. this had me cracking up tonight (thanks ellie - xoxo)

homeward bound

well i am up in the clouds again while i write.

we are flying towards home.

and i am feeling all the feelings this time around.

because i know that not only does our normal routine begin again bright and early in the morning, but that i will likely hear from the doctor's office this week on insurance clearances and timing of starting treatment.

but that will come when it comes, so i am going to soak up these final hours of this vacation.

we had this vacation on the books for quite a while now, and even with a ton of complications that came up in the last couple of weeks, we stuck it out and we made it happen.

although we have so much going on right now with the houses and everything else, we figured that this would be our only chance to get a vacation in before treatment starts so the timing seemed exactly right (minus all those complications we had to conquer to make it happen). we won't be able to plan another vacation until we know more about the road that lies ahead.

so we spent the last couple of days with barrett's aunt and uncle (hi steve and terry) in north carolina and it was great.

as you know from my earliest post, we got to walk along the beach. we got great sleep (i seriously think i got more sleep during the last 4 nights than i have in the last month. no kidding. that place was magic for me, and i had no nightmares). we climbed lighthouses. we saw wild turtles in their element which was so cool. we learned about the history of the lifesaving stations. we walked on the field where the wright brothers first flew a plane. we ate great seafood. we saw wild horses roaming free and that was pretty incredible. we saw amazing sand dunes, beautiful marshes, and neverending blue water. and we laughed. a lot. we totally relaxed. it was the perfect vacation for us at exactly the right time.

so onward we will go this week. our house will be listed, we will keep our fingers crossed for offers. we have fun things to look forward to. a cooking class for malena. our first mariner's game of the year.

i hope that your week ahead includes some fun as well. if not, find it. it can be as close to find as you want it to be.

you just have to want to look for it.

happy monday peeps. here we go.

anywhere i fly, you fly.

homeward bound we go.

atlantic

 we took her to the atlantic.

it was the first time she has seen and put her feet into those waters.

we were looking for shells and all of a sudden i heard "momma, look at this special shell that i found!"

not sure that there could be a better shell to be found than one that looks just like a heart.

our time on vacation has been great. we have been able to relax. we have slept the best we have in a long time and that feels so good and restful. we have seen a ton of new places and learned new things. we have taken new adventures together like climbing to the top of lighthouses. we have had good time with family.

it has been good.

so very good.

in the clouds

am writing this from a plane, looking out over the clouds.

we are taking a few days to just have fun. no work emails. no voicemails. no deadlines. no waking up at 5am and being in constant go mode until our heads finally hit the pillows late at night.

i am drinking a green tea and just finished reading people magazine, my airplane guilty pleasure/routine.

but i decided now would be a good time to write some words and catch up a bit in this space and hopefully when we land i can post it.

life has been a whirlwind these last couple of weeks and i have not been able to catch up much on life.

we had been considering the idea of selling the house and moving for a while and were waiting on pulling the trigger until after my scans. because as we all know, life decisions revolve around scans whether we like it or not. and clearly, we don’t like it.

but the night before my scans, a friend let us know that a house in her neighborhood was for sale. we knew that the house would go fast as do all houses in the current market in our area (as in houses selling in less than 24 hours with all cash offers over the asking price – ugh).

we knew that if we wanted to see it we were likely going to need to do it on the day that i had scans. we went to seattle cancer care for scans in the morning (and ellie brought her usual array of kick ass snacks for me to eat once my scans were done) and then we headed back to to the eastside to look at the house. i was of course feeling like complete hell by that point, but in some ways, looking at the house was a good distraction to kill the time between scans and results.

since my parental team (the term my siblings and i jokingly use for our parents) were in town for scans, we went and looked at the house with our realtor. i knew there was a really good chance that we were going to love it, and i was right. so we knew we were interested but those 4pm scans results were the decision maker on whether we would likely pull the trigger.

when we got the news later that day, and were sitting in the doctors office as two absolute messes, i looked at barrett and said that it was good we didn’t make the offer that afternoon. in that moment, i felt like the decision had just been made for us and we would hunker down in our home and not sell or think about moving any longer. before we left seattle, we had a text from our agent asking us to call him when we could. when we had a chance, we called him to let him know the news and that life had just turned upside down. he let us know that he had told the listing agent our story, and she really wanted us to have the house and thought that the sellers would too. they have 3 kids that go to the same school malena does so i am sure as parents they could relate to our hopes to get her into the district, and as parents i am sure they could feel for our situation with my health.

so that night when we finally we laid down (knowing we would likely be awake all night anyways) we talked about the house. i had this moment of clarity that was telling me it seemed insane, but we should go for the house. i knew at that point that the next few months at a minimum were going to be hell for us emotionally and for me physically. if we got it, it would give us a huge piece of mind and it would allow us to live closer to her friends, and adults that barrett and i are friends with. clearly having people who live on our block that could help us if needed would be a good thing for us with what lays ahead.

when we got up in the morning, we talked with our parents to confirm if we were or were not thinking rationally about the decision, and we decided to go for it. barrett and i had taken that day off work due to the news and the fact that we were basically absolute messes, and so we made the call and put the offer in.

the rest is history, as we got the house and are now in the throws of that deal moving through appraisal, inspections, etc., while simultaneously getting our house ready to sell. to say the least, life has been insane, sleeping has been extremely low, and i have just been trying to tread water and keep my head up. if you have sent me an email, text, fb message or any other type of smoke signal to let me know you are out there, i have seen it, i really appreciate it, and i will be in touch soon. i promise.

last night we were standing in the downstairs of our house and it felt so different having our furniture largely moved out, it looked like it did when we first moved in. i remember those two young kids that moved in to that place. newlyweds who had their entire lives ahead of them and had no idea what would come their way. they would one year later welcome their baby girl and bring her home that house. they would pace the floors all night long when she wouldn’t sleep. they would bring her home to that house after her two surgeries at children’s hospital when she was a baby. they would watch her grow. that house would hold their laughter and some of their best memories. they would celebrate birthdays, they would answer calls when there was good news, and when the calls would bring bad news. they would walk in that front door on july 16^th 2010 and look at each other in total shock and have no idea how the word cancer just came into their lives. they would give shots of immunotherapy drugs for a year there. they would have good days, and they would have really bad days. that house would be where her hair would start to fall out, and where she would hurt so bad from the treatment and the surgeries that all she could do was lay on the couch. they would spend so many nights up all night watching shows just to pass the time until morning came and they went to seattle for scans and results. that house holds a lot of tears, but it also holds an immeasurable amount of love.

there are so many things i would tell those kids if i could, and some days i think that if i had only one thing to tell them it would be this: watch the mole that starts to grow on her collarbone. i know that at that time it grows you will be solely focused on malena and her surgeries and getting through that. but watch the mole and get her into the doctor’s office as soon as you can. if could, maybe, have changed everything.

last week i went in to see my general doctor, the one who was originally concerned about the mole and did the biopsy. she of course asked for the latest, and of course she cried. as i have done so many times before, i thanked her for taking that biopsy, if she hadn’t, i don’t know where we would be at today. i told her is still my guardian angel and on that fateful day she  made a decision to take a biopsy that would inform the rest of my life.

i am so thankful for all of the people who make up our team, in addition to our family and friends. my doctors. my nurses. my naturopath. my nutrionist. our counselors. moving through this definitely has taken, and will continue to take, a village. there is no doubt about that.

yesterday we met with one of our cancer counselors to have one of what will be many tough conversations. i don’t know how we would make it through this without the help of the experts we are lucky enough to lean on. as we devour boxes of kleenexes and talk about things that no one should have to talk about, and certainly no parents should have to talk about, i am so grateful that there are people who dedicate their lives to helping cancer patients move through the unthinkable and find their way to somehow keep putting one foot in front of the other.

so that is what i am going to try my best to keep doing.

one step at a time.

i don’t know what the future holds, everything is uncertain and that scares the absolute hell out of me.

but the one thing that i do know is that i have a ton of people rooting for us, praying for us, and cheering for us.

even all the way up here in these clouds on this blue sky day, that makes this girl feel grounded.

anywhere i fly, you fly. xoxo

here is what i know

this is not an entire list -- but here are some things that i currently know.

+++ this last week went by in a flash, included a lot of tears, and moments of just trying to hold on. i just couldn't get back to this space because by the time i had a chance to write at night, i was either an emotional mess or so exhausted (or some combination of both) i just could not get the energy to open my laptop.

+++ my docs are working on getting insurance clearance for the treatments, i expect i will start by mid-may, timing is still tbd until insurance clears and my schedule gets set.

+++ i will get treatment once every three weeks of two high dose immunotherapy drugs. after 12 weeks, one drug will drop off and i will stay on the other drug for the rest of my life.

+++ i might now feel as good physically as i ever will again since i will never have a time that i am not doing treatment (until they find a cure which i am hoping happens asap).

+++ the level of the side effects differ for each patient, but common ones include liver problems, kidney problems, vision problems, weight gain/loss, hair loss, skin rash, blisters (all over), hormone problems (thyroid, adrenal), inflammation of brain, intestine problems. how ironic that the drugs to kick cancer in the ass will also simultaneously kick my ass.

+++ worrying about getting malena into our preferred school district has been a long worry of mine. if you have been reading this blog for awhile, you know that we have transferred her into the district but knew we would eventually have to move. although it is the last thing that would normally make sense for us to do at this time, we are putting our house on the market and we bought a house. there are probably no less then a million reasons why doing this now does not make sense. but there is one reason it does - we found a great house, in the perfect neighborhood where she will be surrounded by friends, and we no longer have to worry about getting her into the district each year on a transfer. it is one thing that can go right for us, and one worry that we can alleviate. we can make this move and start memories together with all three of us in this new house. for that reason, it makes all the sense in the world.

+++ i have been quiet in this space and in real life because i needed time to start to process all of the things that we now have to deal with. what life will be like for me once treatment starts. what it could mean for us if treatment doesn't work (i am thinking positively, but when getting this type of news, you also have to face reality that things may not go your way and you have to think about time and the decisions you need to make).

+++ i am thankful for all of the love of friends and family, it means more than you know to us that whatever this next chapter is going to look like, we won't be turning the pages of it by ourselves. for that i feel so lucky.

+++ melanoma is a f*^#@! (bet you all can figure that one out)

+++ i know that i will have to pick up my boxing gloves again for what will be the hardest bout i have gone through yet. i am still slowly circling the ring and getting my energy and my drive up. but, i will. i know i will. there is simply no other choice.

have a good monday peeps. xoxo

i don't know what to say

i have had more than one friend write that to me within the last couple of days.

and i can totally relate.

because i don't know what to say either.

(as a sidenote: when someone gets bad news, telling them i don't know what to say, but i am here to support you, is honest and appreciated. feel ok to tell someone you don't know what to say, i guarantee they likely don't know what to say either. it is good common ground.)

the last couple of days have really been a tear filled blur for me.

barrett and i took thursday off work. we had some discussions with our parents in the morning on some immediate next steps (more to come on those soon but too tired to write much tonight) and then we headed out of town for the afternoon to take malena up to see the tulip fields in mount vernon. it was a gorgeous blue sky day and i needed to get out of town and i needed some fresh air.

friday we both worked. it was good to have something to concentrate on, but there were definitely moments the tears came on but i was able to keep them at bay. i was more than ready to get out of the office by the time my day was done.

this weekend we layed pretty low and stuck close to home. that was just what i needed. i didn't feel too much like talking, i just wanted to try and hold it together as much as i could with kiddo. but i would say that on average i have been in tears every couple of hours through the last two days. my eyes are tired. i am tired.

tomorrow we head back to work and soon i will have to start to navigate what my work life will look like when treatment turns it upside down.

i will write more on treatment soon too. as i am sure you can guess, i am not up for that yet. i can't even look at the papers they sent me because the first page has a stat about life expectancy when starting treatment. and it isn't good. so i haven't been able to go back to those papers yet, but i know that i will have to soon. i just need to gather up more of my strength before i can handle it.

so i really don't know what to say, but i know that this place will hold a lot of my words moving forward. ironic that last week i said i couldn't find my way back to this, and i now have no doubt that this is the place that i will come to so often as i have before.

leaving words here can at times allow me to feel just a tiny bit lighter because i am not carrying all of them by myself any longer.

have a good monday peeps. much love.

results

today is a very hard day.

i am going to make this short because i am a mess and don't want to be on my laptop right now.

not good news.

there are four spots on my right lung.

long story short, it looks like the time has come where surgeries are no longer an option, and starting treatment to see if we can shrink or maintain tumors is my only option.

much more to come on all of this.

thank you for all of the love and prayers for today, and please keep them all coming. i am going to need them more than ever. xoxo

here we go again

check in is at 9:45.

results are at 4pm.

it is going to be a long, long day.

i barely got any sleep last night which was not a surprise.

i have been up since 4am and feel a little bit like a walking zombie and sad that i can't have any green tea to give me a little boost to get through at least the next couple of hours.

i will post an update after we hear from the doctor.

thanks for the love, prayers, good vibes, and mojo.

xoxo

this week

scan week.

here we go again.

wednesday morning scans.

wednesday afternoon results.

that is going to be a long day, because i will feel like hell in between.

but i will only have to wait a few hours for the results and i am thankful for that.

it is hard to believe that it is this time again. i feel like i am still trying a bit to get my feet under me and get my bearings after my surgery.

when i got the schedule, april 6th seemed so far away even though it was really only like 7 weeks. but any stretch of time i can get between scans and tests can seem like a long time to me when i am at the start of it. and then it quickly passes, each day dropping away, and then before i know it i am walking into seattle cancer care and heading in for the scans and the routine that comes with them.

this blog.

i miss writing here, i just can't seem to find my way back to it like i always have.

i am not sure why it feels so different this time around to find the words to write here.

it just does.

so we will see how it unfolds as i move through this week and beyond.

thanks for all of the love and prayers, they bring me a lot of comfort in these sleepless nights.

xoxo