Tuesday, January 23, 2018

and again, i don't know what to say either

"we've got to live, no matter how many skies have fallen"
(d.h. lawrence)

i don't know what to say either. 

this feeling is familiar, but it is also different this time.

yesterday was our biggest blow to date, i am not going to lie and pretend it was anything but that.

to know your doctor so well that without him even saying anything you know. you know what he is about to tell you is not what you want to hear.

and you talk through next steps. and you talk through options. and you realize that the next steps and the options that for so long seemed like they would never really have to be my options, are now knocking right on the other side of my door.

in 8 weeks, i might be out of the trial. i might still be in. i might have one less option that worked for me. and these tumors on both lungs may continue to grow at this fast rate. and maybe they will shrink. and maybe they will stay the same. i am not giving up, but i can tell you that it is damn hard on these days to hold on to hope as it feels like it is slipping through your fingers no matter how hard you try to hold on.

i am numb. 

i probably will be for a little bit.

i am just trying to breathe and put one foot in front of the other.

i went back to work today. i worked on my projects. made decisions. sent emails. celebrated a work milestone with colleagues that i had worked on for over a year. i laughed.  i went to a parent teacher conference. i watched my daughter do gymnastics. i introduced my daughter to the music group 10,000 maniacs (one of my favorites). she liked the music, not surprising since she is my kid after all. i layed next to her while she fell asleep. i signed up for a mom's activist group that is sick and tired of hearing of school shootings after school shootings.

the shooting today was the 283rd school shooting since 2013.

the 283rd. since 2013.

the sky may be falling all around me, but it is also falling around all of the parents and loved ones that lost their kids today. and yesterday.

and it was not even a top headline in the news today.

so why i feel numb, i can also go forward and make choices every day like i did today to keep moving. to keep going. to keep joining. to keep living.

i am not sure yet how all of that will look, but i will figure it out.

i - and we - always do.

thank you for all of the love, support, prayers and mojo.

i carry all of them with me into the ring and even on the days like yesterday, when i just couldn't carry the gloves anymore and had to put them down for a while to cry in the corner  of the ring and wonder why this has to be my fight in the first place. it shouldn't have to be anyone's fight.

i think that i have cried more tears in the last 4 weeks of my life than i did in the entire year of 2017. 

but that is to be expected. i have had some huge losses and some devastating news.

as poe said "never to suffer would never to have been blessed."

and oh, how i have been blessed.

thanks for reading and sticking with me.

onward - whatever in the hell that is going to look like. we will find out together.

more soon.


Monday, January 22, 2018


we did not get the news we hoped for. the tumor in my left lung has grown by 14% and a tumor in my right lung has grown as well. if the growth is beyond 20% in my next scans in 8 weeks, they may allow me to continue on the study for one more round but we will decide then. if not, i am out of the study. following that, there may be an option here that requires hospitization and makes me extremely ill or going to texas or maryland for a tumor antibody study they have that requires surgery. we will cross that decision if we have to. send us love, we need it more than ever.❤️

Sunday, January 21, 2018

dominic + scan results

"it is better to light a candle than curse the darkness"

this is my friend dominic.

i have wrote about him before.

he was diagnosed with crohn's disease last year and is currently going in for infusions at seattle children's hospital.

he is a fighter.

you can tell that from many things about this picture. he is smiling. you can tell he has a positive attitude. he is holding boxing gloves. those are the gloves that i gave him when he was starting to have infusions. those are the gloves that were with me for every surgery i had and my scan result appointments and infusion days. they were with my sister-in-law kim when she had her breast cancer surgeries and appointments. when kim gave them back to me, i knew that they now belonged to him from now on for his fight. and i was right about that. he is a fighter in his own right, but those gloves have been through some serious battle rounds. so they can only bring him luck as he faces his own battles. he has an awesome family and so he already has a tremendous amount of luck on his side. 

you can't help but get inspired by a young man that shows the world that no matter what the age, you climb in the ring, you put on the gloves, and you fight. no matter what. you fight. i know he is a hero to me.

friday was another fight day for me.

scan day.

i fasted as i always have to.

it took two tries to get the iv in my arm. the first time was not good and the line broke open and blood went everywhere. not the kind of morning i like to have.

they got it in the second time but damn it hurt for some reason due to the angle they had to take to get to my vein.

this time, i took two kinds of nausea meds before we headed to seattle because my doctor gave me the ok to do it in hopes that i wouldn't vomit during the scan.

that plan did not work.

i held the vomit in long enough for the machine to start to roll me out because i wanted them to get the images. and then it was hell. i have kind of given up hope that i will be able to do those scans anymore without getting sick. it just seems to be a given now so i guess i will just assume that is how it is going to roll moving forward.

tomorrow morning i fast and check in at 10am for my bloodwork and my urine sample. then we meet with my oncologist to get the scan results at 11:30.

monday is going to be huge. it will be the day that tells us if this clinical trial is working or if they will not let me continue on.

this feels like the most significant results day yet.

if i get to continue on, i will have infusions late in the day tomorrow. i will have a psychiatrist appointment and another appointment in the afternoon. it will a long and full and tiring day.

as i usually do on the weekends before scans, i kept myself in constant motion. because sitting means thinking. and thinking means thinking about scan results. and i felt like i needed to take my anxiety meds every 5 minutes to keep myself in check. but i didn't. i took them when i am supposed to and maintained my new normalcy throughout the weekend.

so please send dominic a lot of love, he has an appointment coming up in early february to tell him if his infusions are working. we need to send him all of our good vibes and prayers until then (and after then too of course).

please send us your love and prayers too - we need them to make it through tomorrow, whatever it shall bring us.

anywhere i fight, you fight.

let's hope tomorrow brings us a knockout, if not, i would be ecstatic with even the win of this round.

here we go.


Sunday, January 14, 2018

the angels among us, my friend jenny

"she will rise with a spine of steel and a roar like thunder"
(nicole lyons)

meet my awesome friend jenny.

today she ran a half marathon and dedicated each mile to someone she was going to think about and pray for during that mile.

i was one of the people that she dedicated a mile to.

what a huge honor.

she asked each of us to send her a detailed list of the things that we would ask her to pray for us while she ran our dedicated mile.

if you look in the top picture, you will see my name next to a heart on her left forearm. 

i first met jenny years ago when i attended a retreat that she too was at.

i could tell from the moment that i met her that she was awesome and a person that i would hope to be friends with a for a long time to come.

lucky, lucky me that is how it has turned out.

she made a goal to do this and she did it.

and she thought about others the entire way.

i asked her when she was done today how it went.

she told me that it helped her to see how many of us have big issues to deal with and hearts as big as can be.

i would say the same about her.

i am surprised her heart can even fit in her chest it is so big and is clearly demonstrated daily by the way she loves.

so today i was again reminded that they are angels that have physically left us, but there so many angels that are right here with us cheering us on.

what a comforting thought to end this day on.

the quote above could have been wrote specifically for jenny.

it fits her to a tee.

how lucky i am to call her a friend - and an inspiration.

i thank my lucky stars every day.

jenny - you rocked it today. i know that myself, and so many others, are so damn proud of you. i hope that you are just as damn proud of yourself.

keep kicking ass as only you can.

love, one of your biggest (and numerous) fans.


Wednesday, January 10, 2018

for greta

"sometimes hope
seems silly
and a bit wasteful
and sometimes even

hope looks weary
feels weary
and heartbroken

or maybe that's disappointment
who pals around with hope
upstages it at times

because hope is kinda like that
but not weak
never weak

well, i wouldn't turn my back on it"


Monday, January 8, 2018

another angel gets her wings

"aunt: a cherish friend and personal cheerleader
that will always see you through rose colored glasses"

early this morning we lost my beloved auntie doreen.

my mom and my auntie carolyn lost their sister.

all of us kids lost our aunt.

my cousins lost their mom and their kids lost their grandma. 

and the losses in our immediate and extended family and her friends go on and on. a lot of people are broken hearted tonight. that i know for sure.

she went into the hospital last night, i could hardly sleep all night, and when i got the call from my mom early this morning in the darkness, i knew she was gone as soon as my phone started to ring. 

so my day was spent at home with my tears and my memories and many calls and texts back and forth with my family. i am fighting this cold still and do not want to risk getting anyone sick or myself sicker before i have treatment on wednesday. 

i could never count the memories i have with her. so many of them filled with her laughter. 

oh her laughter. it was one of the best i have ever heard.

this picture is from just a few weeks ago when we went to see her for christmas. this would be the last time we would see her without any of us knowing it.

i am so thankful that we took this last picture with her, you can see her smiling and starting to laugh because we had to take it a couple of times to actually get her to look in the right spot;)

she was one of my most favorite and treasured women on this planet, and always will be for all my days to come.

she leaves the pieces of my heart clinking around in the bottom of my feet. truth be told they haven't really come back together at all since we lost my grandma and greta put down her boxing gloves.

i like to think that tonight they are all having a good laugh together and sending all of us a bunch of love.

i don't know why our family has to go through so much pain in such a short time. 

but i know that we have some pretty great angels watching over us.

and for that, and for all of my memories with them, i am beyond thankful.

i love you auntie doreen to the moon and back again. i am so glad that malena and barrett got to love you too.

they too get to be some of the lucky ones who were loved by you.

lucky, lucky us.

what a special and honored club to be in.


Sunday, January 7, 2018


i have chosen "mend" as my word for 2018 (if you have a word of the year, you can get a heart talisman made with your word by going to my friend liz's soul mantras shop, and you can also enroll in my friend ali's one little word class).

i feel like there are a million ways that i could/need to mend this year, and so it seemed like the right word for me to carry through this year.

hands down, 2017 was the hardest year of my life and it ended on an especially tough run with the loss of my grandma and my friend greta within a week of each other over the holidays.

i have a lot of ways that i intend to mend this year and had intended to write about that in this post. but i have come down with the cold that everyone else in the world has and it has just totally wiped me out. so those will be words to fill another post soon.

during the holidays (the day after christmas at 7am - no rest of the weary) i had another treatment and all of my blood work was looking good. my next treatment is on wednesday of this week (for some reason this week my treatment is off its regular monday schedule).

i will then have scans on the 19th, and results on monday the 22nd and treatment pending the results (which my anxiety is already very high about). so that is life the next two weeks medically for me.

this weekend greta's family (see previous post if you need a reference) celebrated her life and she was on my mind all weekend as was her family. please continue to send her husband wallace and their son traz love and prayers as they find their way forward without her physically with them each day.

monday is the cancerversary for my friend beth. even after the years that have gone by, i still remember her calling me like it was yesterday. i will never forget where i was or what i was doing or her voice when i answered. ever. so please send her your love and prayers tomorrow too because as you know from reading my blog, these anniversary dates are so hard emotionally to get through.

more to come from me soon, i hope that all of your new years are off to a great start.

happy 2018 peeps.

++important sidenote 1: for the awesome person that sent me the starbucks sets of cups, thank you - thank you - thank you. there was no note and so i am not sure if that was intentional or not, but i am hoping you read this and know that i got them and love them. thank you. xo
++ important sidenote 2: thank you to everyone who sends me happy mail, i have not been able to thank you all individually. yet. but know that i get the mail, i love it, and i appreciate you for sending it (insert huge heart emoji here).