Wednesday, February 14, 2018

she was ours + he hung the stars + she needs our support


things have been quiet in this space.

i think mostly because i continue to grieve the loss of two of the most prominent women in my life and my friend greta. and i grieve the news we got on the latest scans. and i deal with all kinds of potential realities for us that those last scans brought.  and all of the side effects that i deal with. and in between all of the grief and anxiety and side effects, life goes on.

this last weekend we laid my grandma to rest. it was a beautiful day, blue sky and gorgeous. i think that she ordered that one up just for us. it was a day surrounded by family and recounting our memories of her, there were so many special things that made her ours. 

the following day, we celebrated my dad's 73rd birthday. and because all of us kids (and grandkids and great-grandkids) were home we all got to celebrate my dad's birthday together which was special. grandma ordered up another blue sky day for him and we got to celebrate and laugh with him. him and i took this picture before we headed home, and i wore my "grateful" sweatshirt on that day because i am grateful for him (and my mom) for probably no less than one million different reasons. the card i got him said "my dad hung all the stars, and then held me up so i could reach them." i couldn't have wrote a more perfect card myself, he continues to hold me up every day.

my friend lisa starts her radiation for breast cancer on monday. she goes five days a week for four weeks straight. thanks to everyone who has already responded that you would like to be in on the happy mail campaign for lisa. you all rock. and it is not too late by any means - if you would like to make a cancer fighter's day a little bit better as she fights through daily radiation, get in touch with me so we can add you to the list and give you all the logistics. for those of you that have already let me know you are in (thank you!!!), info coming your way shortly.

thank you in advance, i know she really appreciates knowing this campaign is being done for her.

i hope that you all had a great valentine's day. xoxo


Monday, February 5, 2018

treatment day is done

this is going to be short because i am so tired.

my bloodwork was good this morning, so treatment was a go tonight.

we started the day at scca at 7am and got home at 8:45pm with a day of work in between bloodwork and infusions.

so to bed i go, and 3 minutes before bedtime, so my big brother should be very happy with this post time.

more tomorrow, thanks for all the love.

xo

Sunday, February 4, 2018

world cancer day + treatment tomorrow + happy mail campaign for lisa

"and here you are living despite it all"
(rumi)



today was world cancer day.

14 million people a year are diagnosed with cancer.

14 million.

just let that sink in for a second, and think about how insane that number is.

we need to find cures. asap.

the following is what i posted today on my facebook and my instagram (jill p - are you on there yet? yes, i am talking to you;) accounts. 

"today is world cancer day - on this day, i would like to thank all of the researchers, doctors, and nurses who dedicate their lives to finding cures and taking such good care of patients like me. i am also sending my love out to all my fellow fighters still in the ring with cancer, those who have finished their rounds, and those fighters we carry in our hearts that put down their fighting gloves for the last time - and to all of the families and loved ones whose lives have also been forever changed due to cancer, because they are most certainly fighters too❤"

tomorrow i go in at 7am for bloodwork and a 7:45 appointment with the docs to see how my blood levels are and to ensure that i can have treatment tomorrow. then we meet with research specialists for another research trial that we signed up for to help scca develop a program for parents with cancer that have young children on how to talk to your kids and support them. if we can get help ourselves and help other parents we are all in.

then we go to work because my schedule got messed up somehow.

then we go back to seattle at 5:15 for my infusions.

tomorrow is going to be one hell of a long day. that i know for sure.

but what i also know is that every day is a fight. not just for me, but for others.

which leads me to the happy mail campaign for lisa.

my friend lisa is a breast cancer kicker-asser and she is about to start 20 rounds of radiation. 

20 rounds.

so as you can imagine, i think this girl deserves to get some happy mail while she goes through her 20 rounds of radiation and kicks breast cancer in the ass.

so, if you haven't been on this blog long enough to know how this works, here is the deal.

if you are interested, you let me know (leave a comment with how i can get in touch with you if i don't already know, message me, text me, reach me through facebook or instagram, send me an email, send up smoke signals from your backyard, trip me as i walk by you, yell at me when you see me, throw things at me (preferably candy) - whatever it takes.

i will then assign you a week to send lisa some happy mail which can be a card, a postcard, a simple note on a post-it note, whatever you have time and the desire to do. the point is to bring a little happiness to her mailbox as she goes through radiation. if you don't know lisa, that is ok. trust me, getting mail from total strangers that are cheering you on pretty much rocks and makes you feel less alone in the world and in your fight.

so if you are interested, let me know and i will share her address with you and all the details off-line of the blog.

i hope that you all had a good weekend - and that your mondays get off to a great start.

anywhere i fight, you fight.

and back in the ring tomorrow we go.

as my big brother says, gloves up. xo






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.

xoxo





Monday, January 22, 2018

results

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"
(unknown)


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.

xoxo




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.

xoxo