Tuesday, June 28, 2011

colorado bound

there has been a lot going on...

i'm excited to "report" that i am heading to Colorado to join my friends at Frontier late wednesday night. i couldn't get an earlier flight, so i'll be pulling into camp pretty late. but i'll get 3 full days of camp and some great time with my girls. i'm super excited.

i was able to get my PET and CT scans scheduled for early wednesday morning. it'll feel good to get these out of the way. i've never had a PET scan before and they always feel really serious. i'm glad i'll have them done early b/c you can't eat. such torture. my follow up with my oncologist isn't until next wednesday, so there is more waiting involved. but with the holiday weekend there really isn't much to do and that frees me up to get away. my reconstruction is still scheduled for july 8th, but is clearly "up in the air" based on the results of the scans.

being at camp and in colorado will be good for my soul. not only being in one of the most beautiful places on earth, but getting to be with my high school friends. it is so life-giving. and in light of what is going on, i'm looking forward to it.

Saturday, June 25, 2011

Waiting

I waited patiently for the LORD;
he turned to me and heard my cry.
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the LORD
and put their trust in him.

i remember singing this song (40 by U2) in youth group. and as i sat down it came to my mind. i'm not a naturally patient person and I don't typically like to wait. that's why i don't go through drive thrus, i hate waiting. but in the past year i've learned to wait a lot and i attribute that mostly to doctors' offices. even at the pediatrician i could wait 45 minutes with a toddler in the room. i'm not sure anyone is thinking through that. anyway. i remember last summer getting my initial breast ultrasound and having to wait a whole weekend and a couple days before the biopsy then having to wait 2 more days for the results. some things are quicker b/c of technology. i can have a scan that can be read immediately. but other things you have to wait for. whether it's a phone call from the doctor, a test result, an appointment, an answer. you get the idea. i'm waiting.

i woke up to the cries of my sweet little lady around 3:30a. although i didn't want to get up the feeling of her head in the crook of my neck and her arm wrapped around me made it all worth it. even if i couldn't go back to sleep. i am more distracted about our camp trip to Frontier. there is so much (and i mean so much) paperwork required, mostly b/c of some crazy Colorado state laws. so i'm making sure we have everything we need for the 27 kids and 3 leaders. it's what i love...forms, check lists, organization. i have been looking through all of this for weeks and today we leave. well, they leave. i am sad to say that i won't be leaving with them today. i'm waiting.

after telling my oncologist on monday about some chest/shoulder pains i've been having for the past 5-6 weeks (off and on) he decided to do a scan. that was wednesday evening. the call came thursday as i walked in to pick up charis...there were some "significant changes" on my scan that the doctor wanted to talk to me about. could i come in friday morning? yes! waiting. clearly, the dr doesn't call you in for nothing. we arrived at the doctor and i was crazy nervous. he told us about what the scan showed and that he needed to run more tests/scans to see what it could be and what he can biopsy. he is "very concerned." we talked about how i'm supposed to leave for camp and he advised me to get the scans done as soon as possible. he also thought that being at camp with this "hanging over my head" would be too much, but i may be able to do it. i think i could, but i decided it was best for me to stay home and get the scans done, then hopefully join the group at Frontier later in the week. i waited all day yesterday for a phone call to schedule my scans. it never came. i'm waiting.

hopefully they will call monday and i can get them done monday or tuesday, then see my doctor and depending on the news, head out to frontier wednesday or thursday. i want to be there because, well let's be honest, it's an incredible place. but mostly because i begged these 2 senior girls to go who i love and want to spend the week with. i know God can work without me, it's not that i think i need to be there, i want to be there. so, it's all a little up in the air. and in many ways life feels like this right now. i may or may not get my reconstruction surgery scheduled for july 8th. i may or may not get to go to camp. i may or may not have a recurrence. lots of uncertainties. yet in the midst of these uncertainties i know what is certain and stable when i or my life is not...God. so i wait patiently for him...he hears my cry, my plea...he will give me a firm place to stand.

Wednesday, June 22, 2011

for the cure

there are lots of things out there "for the cure" and i'm honestly not always sure what that means. i was asked by Komen Charlotte if they could tell my survivor story. i was thrilled b/c i'm all about sharing my story. as a young woman (and mom) with cancer it can feel completely isolating. things are happening to my body that shouldn't for 40 more years or even ever. but they are. adam and i are constantly saying, "this is just part of our story." we are continuing to figure out how God wants us to live this story out and share it with others. i'm thinking a book and maybe even get on the Ellen show. :) i will take any and every opportunity to share my story to help other young women either prevent this from happening to them or to help them navigate through this tough tough journey. i've already gotten to meet 3 other women my age and in similar stages of life going through this. it's been good for all of us. anyway, one thing Komen Charlotte is doing is joining with Carowinds for an awareness/fundraiser event for BC. you can adopt a (pink) duck, get special priced tickets for certain days and other stuff "for the cure." but my story, along with other local women, is posted on the carowinds site. that's kind of exciting for me. check it out here. and come out to the park. i think i'll also be on some Race stuff as we get closer to october..save the date for October 1st and join Team Patwa again this year.

anyway, just wanted to share. i mean, between the fox news piece and this i'm becoming pretty famous. :)

and just because she's so stinking cute....

Thursday, June 9, 2011

19 months


charis is 19 months and officially a toddler. this past month has been a blast and i feel like she has just "blossomed." we are enjoying her a ton. i mean, it'd probably be weird to say we weren't enjoying her, right? she's talking a bunch. she's becoming super social. she is apparently getting taller because she can reach things now. it's a good thing i'm on a decluttering spree. she has a bit of an independent spirit for sure. she wants to do a lot on her own but isn't afraid to ask for help. but sometimes she doesn't want any help. and then there is a meltdown. after a few minutes she regroups and it's back to doing it on her own. we are staying busy and enjoying life. she continues to be a delight...

- earlier in may we went to the beach with some YL staff women. although it rained a lot we got a little beach time. charis loved the water and taking fistfuls of sand to dump on herself. i hope we'll get another family beach trip in...maybe the fall.

- we got her a new bike seat that is awesome. it goes on the front of our bike between the rider and the handlebars. and she absolutely loves it. every time she sees a bike she says "bike, bike." it's fun that she's in the front too b/c she can see stuff, so she'll point or talk about things she sees. oh, and thanks to a friend we go the $100 seat for only $40 at kid to kid. yay!

- she likes to make a fish face, which is so cute. and now she gives hugs and kisses. oh i love to cuddle with her, whether it's reading books at night or in the morning or just because she wants to cuddle. i remember a friend saying that they start hugging around this time, and it's true!

- as i said with her independent spirit she likes to feed herself. i typically don't mind if it's in bite-size pieces, but yogurt and applesauce? she's still figuring out the spoon but it doesn't seem to be efficient enough for her. and she gets pissed if we try to help her. so for the most part meals can be pretty messy or interesting. she's still eating great. she loves tomatoes. she is also back on bananas which has been her favorite for a while. she's recently tried cabbage too. and i made some yummy cuban black beans that she gobbles up.

- she finished up her first year of preschool/daycare. i'm not sure what it's technically called, but she went 3 days a week while i worked this past year and she loved it. her teachers were great too. she's signed up for a month this summer and maybe in the fall.

charis and her cute school friend, desiree
- she's talking a ton. my favorite is "water" and she says it all the time...when it rains, when we drive by a fountain, when she wants a drink. it's pretty cute. she's also repeating a ton. i'm amazed at how much and how appropriately she says "no."

i just love this picture
- over memorial day weekend we took a family trip to the mountains, which was great. the weather was wonderful. we took a couple "hikes" and charis was awesome. one went around a lake so she was saying "water" a ton. after our hike adam took her in the water and she was so cute in her diaper and keens. oh and she loved it.


- she's been having some potty issues and one night we experienced a "rectal prolapse" which was kind of traumatizing. we put her in the bath and things went back to normal after a few minutes. after seeing the doctor they decided not to do anything and hopefully it will fix itself. but she's definitely going poo a ton. i've also decided to put off the potty training...her doctor said to wait til after my surgery b/c she might be traumatized with me being in the hospital and not being able to hold her. that was enough for me...i mean she'll pee in a potty when she's ready

- her bed recently broke so we have a bed rail in place of the crib rail. i think it was an adjustment for her at first and now she tries to climb over it, but thankfully she hasn't fallen out.

she has become a real legit person. everything about her is really fun. disciplining is a whole other issue. i have no idea what we are doing and sometimes she's just so stinking cute. i'm realizing already that i need to be consistent and i'm finding that can be a challenge. i'm thankful that she is really good for others like at the Y and when friends come to watch her. she is funny too. we are enjoying watching her personality and become this feisty, sweet and fun little lady. i'm so so thankful for her...i recently found my journal from when we found out i was pregnant and during pregnancy...it was fun to read about my anticipation for her and now she's here and it's way better and more amazing than i could have dreamed.

Monday, June 6, 2011

thriller

okay so as the hair gets longer it remains OUT.OF.CONTROL. seriously. i think i was digging the bald head over this but it's also nice to have hair. crazy post chemo dilemmas. anyway, it's moved from the cory from boy meets world to more like michael jackson's thriller days. or even soul glow from coming to america. you get what i'm saying...i'm rocking the 80's jheri (jerry) curl. see for yourself.

michael


me

i have to admit that it's nice to only wash my hair about twice a week. yes, that is correct. otherwise it's a poof. i realized early on that i will get to go through every awkward stage with my hair as it grows back. even though i don't love it, it's kinda fun to see what crazy turn it's going to take.



Saturday, June 4, 2011

bookends

(it's a long one)
today i celebrate one year as a cancer survivor. something called a cancerversary. it's not as if i'm celebrating the fact that i got cancer, but rather that i've lived a year since getting diagnosed. and what a year it has been. i'd like to do a sort of "year end review" starting with my diagnosis. technically it probably started in the weeks before when i went to the doctor. but it was on a friday afternoon last june that nurse ruth called to tell my my biopsy had come back and it was indeed cancer. this rocked my world at the age of 31 and with a 4 month old. and as i sat down to reflect (which i do a ton) on this past year it is full of big and little things, hard things, joy, hope, suffering, pain, fear, and so much more. the beginning is marked by my diagnosis and here is what happened in between...
...tests and scans...charis was baptized at our church and we celebrated with friends and family...we went to NOLA for laura's wedding....i had to stop nursing...charis began crawling...we went on an awesome pre-chemo date that was all paid for (and we still don't know who)...i started chemo...i had a head shaving party...we went on a family beach trip...all my hair finally came out and i was officially bald...i had my last period...the hot flashes began...we took a grueling hike at crowder's :)...charis started daycare/preschool...adam continued working on his thesis...i continued working...i had my last chemo...charis turned 1 and we had an awesome party thanks for my sweet friend, jen...i turned 32...i had a double mastectomy with lymph node removal...got to celebrate thanksgiving with all my siblings...we had to spend the weekend in the hospital b/c of an infection...ugh...monday morning bible study with 10th grade girls...we had a quick family overnight in blowing rock which was amazing...i started radiation every day...we took a trip to windy gap with YL staff...we celebrated christmas...i bought a prosthetic bra and forms for swimsuit...worst purchase ever...it snowed...went to myrtle beach for YL...started going back to campaigners more regularly...charis took her first steps...i finished radiation...my dad was diagnosed with bone cancer (metastasized prostate cancer)...adam turned 30 and we had a party at sir ed's...adam keeps plowing through his thesis and has a date for his defense...we get the news that i'm being laid off from YL...i go to the beach with YL staff women...i start my period...adam defends his thesis and passes...woo hoo!!...we take a family trip to the mountains...i help train my replacement at work and have my last day in the office.

the other bookend is my last day at work. when i think about starting the year with cancer and ending it with losing my job that seems completely horrible. but i have to say that it has not been horrible. with each of these "events" comes its own story and there is so much in between. i wouldn't trade this year. by the grace of God we made it through this year. we have survived. in fact, i think we've done more than just survive. i am a different person because of this year...a different wife, mom, sister, daughter, friend. i have become more dependent on God and others. i am more compassionate. i trust God more. i can remember those early days...they felt weird and scary yet i always had peace. and i still do.

we have no idea what the year ahead will look like. there are things we do know...i'll go to frontier with some girls...i'll have my reconstructive surgery...charis will turn 2. and there is a lot we don't know...will adam get a different job using his gifts/skills...will i work or stay home...will i remain cancer free...will God continue to provide the finances we need and the benefits...will we get to go on the post cancer vacation i dream about. regardless of what changes for us, i know that God is still the same. he will continue to provide through the sacrifices of our friends, he will continue to deepen our marriage, he will continue to pursue us, he will not abandon us. i know this.

i recently came across an excerpt from Philip Yancey's book Disappointment with God. it was some random copy i found in my stuff. and it seemed so appropriate b/c it was on the section "is God unfair?" he interviewed a man who's wife battled breast cancer then he was in an accident that caused a head injury...here are a few points this man, who knew suffering so well, made:
"we tend to think, 'life should be fair because God is fair.' but God is not life."
"God's existence, even his love for me, does not depend on my good health. frankly, i've had more time and opportunity to work on my relationship with God during my impairment than before." this is true for me too
"look at the story of Jesus. was life 'fair' to him? for me, the cross demolished for all time the basic assumption that life will be fair."
i sometimes struggle with this "fairness" b/c i see in other people's lives that it is easy (or at least appears to be). or it feels like i can't take one more hard thing. there are things i've come to know/believe in this past year:
God is good and he really loves us
God is the same no matter what news i receive
God is for us
i trust God way more than i trust myself or anybody else
i believe in His "pleasing and perfect will"
i may not get or agree or even like his plan, but ultimately i know it's better than anything i could dream up
Jesus knows suffering, which makes me feel less alone

i realize this post is ridiculously long. and i could keep writing. at some point i saw this past year as a road trip of sorts with different road blocks, detours, scenic routes and such. then the other day i saw it as a book shelf filled with books each telling a story. and on either end of those books were these bookends: cancer diagnosis & last day of work. i'm thinking those bookends are stories themselves.

let me end by saying that i'm thankful for this past year. crazy, i know. i'm thankful for my marriage and a husband who has loved me and pursued me regardless of how my body looks. i'm thankful for my relationship with Jesus. i am thankful for our sweet & feisty little lady. i'm thankful for my family. i'm thankful for my amazing friends. i'm thankful for cleaning for a reason. i'm thankful for nurses and doctors. i'm extremely thankful for our church community. there is so much to be thankful for. and i have lots of hope for what lies ahead. all i know is that i don't want to waste this experience. and i don't think i am.

if you stuck with me. thanks. :) this is how we feel sometimes

Friday, June 3, 2011

last day

i've had a lot of last days in my life...last day of school, last day on a trip, last day of single life, last day of not being a mom, last day with breasts, last day of chemo, last day of radiation, and yesterday was my last day of work.

i spend a lot (and i mean a lot) of time reflecting. this past year has forced me to do it a bit more. so as i've been wrapping up my job i had a tremendous peace. i was okay. and things felt weird. they were weird as i watched my replacement unpack her things into my old desk. it wasn't sad and i wasn't angry. just weird. that is the best way to explain this whole thing. from the time i was told i'd be let go i knew that it was part of God's plan. i know that can sound churchy or uber spiritual, but it's accurate. now i don't necessarily agree or understand the decision. and so it's requiring me to let go.

i'm definitely sad to not be working for young life, even though i will still get to lead at country day. i knew in the summer of 1995 at windy gap that i wanted to work for/be a part of young life. and i've gotten some great and challenging opportunities to do that in the past 11 years. which i'm so thankful for. there is just something about getting to be a part of something big and the community is amazing. so i'm sad to be done. the "exit" has been healthy and weird. and maybe that is the nature of relational ministry. i don't know. i continue to go through waves of not getting it or even being pissed off. then i realize that i have no idea what God has in store for us. He has taken care of us in every way and i don't seem him abandoning us now.

i have applied for a few jobs. and i want to work. i also have to work. but i want to too. i'm not sure i'm cut out to be a stay at home mom. but then again God is capable of anything. i won't really be able to start a new job until after my surgery and recovery which may be mid to late august. and those are details i just can't worry about. for the next few weeks i've got some goals...declutter the heck out of this *$#&hole (i.e. our house), get rid of lots of stuff, and more importantly spend lots of time with our fiesty and sweet little lady.