words

i like words. mostly, i like to talk. so, indirectly i like words. it's adam who's the real wordsmith in our family. i mean i like to write and talk and all that, but i wouldn't say i'm good with words. shortly after my diagnosis in the summer of 2010 (sidenote: really bizarre to refer to it as something that happened almost 2 years ago), i started writing more. i have always gone through phases where i like to journal, but there are huge gaps of time among those. i think i felt like i wanted to soak up everything we were going through. or rather, record it. whether for myself to look back on or something to leave. my writings and musings have lessened as we continue to walk this road. for whatever reason. some of my writing is more specific, like letters to Charis. and sometimes i still rant/ramble. there is a lot to write about sometimes....stupid things people say or processing not having breasts or taking note of my heart during this time. recently i went through my "cancer ramblings" folder and found the document "words." these are a list of words that were not a part of our vocabulary (on a regular basis) prior to June 2010. i'm still building on it, but it's interesting to me to see that in a moment when your life changes, so does your vocabulary.

Recovery

Home health care nurse

Drains

Recurrence

Pathology

BRCA

Biopsy

Genetic mutation

Prophalactic

Prosthetic bra

Axillary

Bald

Wigs

Inductive chemotherapy

Triple negative

Radiation

Oopharectomy

Oncologist

Reconstruction

Tram flap

Free flap

DIEP flap

expanders

lupron

radiation oncologist

lymphedema

estrogen cream

survivor

thyroid

pre-menopause

fertility

recurrence

scans

node involvement

blood work

scars

clinical trial

study drug

malignant

benign

brochoscopy

second or additional opinion

young survivor

pleural effusion

finish strong

final wishes

drain

cancer center

Duke

chemo

......

babies

i've had a lot on my mind lately. one of those subjects is babies. it's always been so interesting to me the idea of "family planning." there are people out there who "plan" for a baby and it happens just as they plan it. there are people out there who try and ache and yearn for a baby, never to be able to get pregnant or experience loss after loss. there are people out there who don't try and get pregnant by surprise. we fall into that last category. we had been married less than 3 years when we got pregnant with Charis. and (AND) we were using a condom. (ps..no such thing as safe sex, kids). the pregnancy was a total surprise and really hard for me to process. my "plan" was to wait til we were married at least 5 years, after Adam was out of school and we were more financially and vocationally stable. so much for that plan. and as i soon found out God had another plan for us that has been a lot better than i could ever imagine.

about a year before i got pregnant i became real friends with Jen Hunt. in that year she shared a lot about her desire to have babies, her ache when friends got pregnant, and gave me a bit of a glimpse into what it was like to long and not have these longings met and in the midst of it watching others grow their families. i learned so much through this friendship. and when i got pregnant, she was my first thought. i was devastated to have to tell her. fortunately, at the time i was seeing an amazing counselor who knew Jen and was able to help me share our news with her. she was the first person we told and it was so hard. i mean, it can still bring tears to my eyes. i know that God is the one who is ultimately in control of the whole baby thing, but it's hard to tell a friend who has been longing and trying for years that you a) weren't trying and b) using a condom and still got pregnant. it's something that deepened our friendship. and i think through this i've developed a tenderness towards other women and friends who long for a baby and/or who experience the loss of miscarriage.

fast forward....after charis was born adam and i started talking "family planning." we kinda felt like now that we had a kid we should probably "plan" for the next ones. you know, how far apart do we want them? when should we "try" for the next one? how many kids do we want? and stuff like that. we hadn't made any decisions considering she was just a baby, but we got the conversation ball rolling. then, THEN, i was diagnosed with breast cancer. to say this tabled our baby/family planning discussion is an understatement. having more kids was clearly not an option as i began treatment. but it was something to think about...do we freeze eggs/embryos before treatment? timing didn't allow us to do this. do i consider getting my ovaries removed b/c i have the genetic mutation that increases my risk of BC recurrence and ovarian cancer? still got them and not ready to get rid of them yet. will my period ever come back if i even ever get off chemo? it did briefly when i finished my first chemo and this was glorious. but with back to back chemos there is a chance i will be thrown into early menopause. this would suck.

so, now charis is almost 2 1/2. i figured by now we'd either have a second or be on the way. this is not an option for us. fairly early on, maybe after my first round of treatments when we thought i was done, we'd get asked about wanting more kids. it still felt like something we couldn't know. of course we'd love to have more kids. but at that time i was waiting on my period and about to get reconstruction. then cancer struck again. the thought of babies or growing our family is beyond back-burner conversations. but it's on the forefront of my heart and mind. people who have kids charis' age are having their 2nd or 3rd child or planning to have more kids. that would be us. friends who are longing for kids are struggling to either get pregnant or have miscarried. this breaks my heart. the Hunts are weeks away from making the adoption of their girls official. this brings me such joy.

scrumpteous

i am in a weird place. we clearly aren't trying to have kids. a) kind of impossible without a period and b) not smart during chemo. but i want more kids. i've never miscarried so i don't know that pain personally. i'm not technically infertile but i am because cancer/chemo has caused me to be in early menopause. so, i feel like i can relate to my friends who are trying and longing and not getting what they want...a baby. even though it's different. then, there is the whole cancer thing. even if i can't physically have a baby we know there is adoption. but is that even a wise decision considering i have stage 4 breast cancer? probably not. growing our family right now doesn't even seem like an option. but that doesn't take away the sadness i feel. we actually have a boy name picked out. i loved loved loved being pregnant and would do it a hundred times (like that one lady on tv...ick). i want charis to have siblings. recently she's been talking about brothers and sisters. so then i'm like, "maybe she knows something we don't." as if my kid has some intuition. that's just crazy. one thing that is really cool is that she will have unique sibling-type relationships with so many friends' kids b/c of what we are walking through now. she spends so much time with other families while we go to Duke and appts and other stuff. especially at my friend, Courtney's, who has 3 kids. adam often says that one day she'll talk of her memories of having two brothers and a sister. i think that's pretty cool. and i'm so thankful that she gets to be with these other families and experience sibling-hood.

minutes after birth...bliss

something i learned in counseling and through telling Jen about our pregnancy with Charis was that it's possible to be sad and feel joy at that same time. that's just crazy. and honestly, i've learned that more and more as i walk through cancer, said good-by to sydney, walk through miscarriages with friends, celebrate pregnancies with friends. it's becoming a part of my life. living in joy & pain simultaneously. i love love love the pregnant belly. i am beyond excited for my friends who are growing a baby. that is a gift to me. i ache for my friends who are trying and longing and experiencing the pain of loss. God is giving me unique perspective because of my experience. it's such a tough subject to talk about. it hurts a lot when all you want is to get pregnant and can't but it seems like everyone around you is (especially at our somewhat fertile church). :) i'm thankful for my friends who are tender towards my position as they tell me about their pregnancy. i'm thankful for my friends who are willing to share their pain of loss and longing with me. and if you want to know a secret, i'm holding onto a pretty big hope that i will be healed and able to get pregnant again one day. i'm serious. and i know it's possible. and i also know if it doesn't happen i will be okay with that. i am thankful for the surprise of Charis. it became evident pretty early on that she was so meant to be born into our family. she has brought us "grace" and "joy" in the midst of so much pain. i mean, she is just freaking awesome. i'm thankful i got to experience pregnancy and her birth too...both of which were amazing.

me @ 40 weeks...love this

so i'm navigating through some strange and lonely waters. i know i'm not totally alone. i'm just trying to process yet another thing that pops up in my heart. babies.

"that's me"

how cute is that face!
remember when i used to do those monthly charis updates? yeah, i've been a slacker. so, this can be her 28 month update! she is up to so much and constantly amazing us. we are learning how to parent a two-year-old as she is looking for autonomy. we are trying to figure out what battles to fight and which ones to let go of. we are trying to figure out discipline. holy moly this is tough. i mean if she asks for time out does that mean it's no longer working? hmmm....

she said she was drawing "america"

- she is a talkasorous-rex! especially in the car. we both feel like her vocabulary has grown so much in the past few months. i remember keeping track of her words then her mini sentences. now she's just talking a lot and using words that i don't remember "teaching" her. It's as if she has this storage compartment that everything we say goes to then she starts to use them as she makes connections. i think this is why i studied child development...it's fascinating for sure. so let's just focus on her talking:

she's into saying things like, "it's not pasta, it's noodle" or "it's not home, it's house" or "it's not mommy, it's Amy" and recently "it's not Ju-Ju, it's Julie" (referring to my sister who she's always called ju-ju and still refers to the twins as "ju-ju babies."

ju-ju babies

"that's me." when she burbs or passes gas she really does say, "that's me." and she'll also say excuse me but "that's me" is pretty funny. recently at church she told the dad helping out that she passed gas. that is my girl!!!

recently when we went to Blowing Rock we decided to drive at night, so i got her up around 10p and we went to pick up Adam from work. she woke up saying, "we go get daddy for work and go for mountains." (she uses "for" instead of "to" a lot). and was in a good mood. i still thought that since it was late and dark she'd sleep. nope. homegirl was a broken record singing every song in her repertoire which becomes one big song of "twinkle little start...ABC song...jingle bells...jesus loves me...the God our Father prayer...where is thumbkin..." it's like we put her on loop. who needs a play list?! it's definitely super cute but at one point after the 6th "how you today mommy?" i just about lost it. she was fine to lower her volume and just enjoy the ride.

so cute in her robe

- i feel like she's totally coming out of her "shell" and let's be honest the shell wasn't that intense, but her look/stare is. usually if people (friends or strangers say "hi" to her she just stares at them). while in Boone she went up to 2 different strangers, grabbed their hand and said, "i'm going to get my daddy." that was when we were in a coffee shop and she was being hilarious. we got her some "coffee" (i.e. warm apple cider) and she was in heaven sitting with us drinking coffee.

me and mama

- she is a pretty amazing little girl. we do know what a gift she is to us and to others. she's been spending the night with different families on a weekly basis since the New Year and hasn't batted an eye. i love love love that she is obedient and good and a joy for others. i'm just saying she might be more obedient with them than with us...you know us parents bring out the "best" in our kids. :) i sometimes wish i could get inside her little head and see what these experiences are like and what she thinks of them. it's a gift to us knowing she is safe and loved and also being enjoyed as God created her to be. it would have been so much harder to make the weekly trek to Durham if she was a mess and threw a tantrum every time we left her. we are so thankful for the many many friends who have taken her into their home as one of their own. i mean, it makes me want to cry. she will know she is loved and that is because of the community God gave us.

my favorite pic of her and daddy

- she is still TWO and does all the normal 2-year-old stuff. like "nnnnnnnnnnnnno!" imagine a wind up here as she says the "n" sound. and she wants to do everything (everything) herself. we are trying to balance encouraging this and making it okay and appropriate to ask for help. she has to give it a good try before she asks for help. but it's important for us to find a balance there b/c being independent is a part of my story and i want Charis to be okay with needing help and others, but especially Jesus. look where i'm at and i'm finally free in that need. she likes to say, "top it" (stop it) a lot but we are trying to turn that into "friendly words" like no thank you. discipline is hard. i'm sure there are tons of books on the topic but that's just overwhelming. i just pray constantly for God to guide us in our parenting. so for all of you that don't see her cry or throw a fit...she does. she goes to time out. she hits us. she talks about her offense after it's done and i'm not sure that is pride or humility. it's hard to know what they "get" at this age.

you can't tell, but she has tevas on

- she still eats really good. but i feel like it can sometimes be hit or miss. or if something doesn't "look" good she won't try it. that's new and must be part of growing up. i mean i sometimes do the same thing.

"i drink it."

- she loves loves loves to read. she could seriously sit for like 30 minutes or longer reading. she especially loves her Jesus Storybook Bible, as do we. sometimes that is my only time in the Word (sadly). but each story points to Jesus and i need that reminder daily. but she'll read anything. even magazines. which i have to be careful b/c she is not ready for the trash mags. but on the way home from Duke i was looking through one so she asked for a magazine. fortunately i found this YMCA camp guide. but after about 5 minutes she asked for the "magazine with the girl on it." yikes! (you never see the words "good clean fun" on People or US)

reading her magazine

- we are noticing that Charis is noticing that i'm sick. at the ripe age of 28 months she is more aware. so, when i'm tired, laid out, sick or sad she is somewhat in-tune to that. we are a little sad about this b/c we've craved her innocence and oblivion. she is really sweet though. she knows we go to the "grocery story to get mommy's medicine" a lot. when i cough she asks, "are you okay?" usually when i get back from the doctor she'll ask, "you feel better, mommy?" and if i cry she isn't afraid and comes and hugs me. i love that. we are just figuring out how to allow her to enter this with us.

it's taken me so long to post this b/c our life has been crazy these past couple weeks. but i've totally been wanting to share some Charis happenings with you b/c she is so fun and a lot of work. we enjoy her so much and sometimes we have no idea what we are doing. i think even since i started this post a couple weeks ago she's already talking so much more and doing more on her own. tonight she really wanted to put her pjs on "by myself." this is a touchy area for me, so i was trying to dignify her desire to try and ability to get dressed. i had to figure out how to gently guide her without doing it. and we did it! she was so very proud of herself. and i was too.
we both got i-phones last month, which have actually be great for the commute to Duke. and for taking pictures. all these pics are from our phones. i'm obsessed. well, i hope you enjoy some of Charis.


"heytell" on her phone

joy and pain are like sunshine and rain

*you may remember that song from the 90's

there is a lot of joy lately. joy in the midst of pain is good. in fact, it's better, i think. or maybe i'm just a little bit more in-tuned to the joy. because let's be honest, in the midst of pain it can be too much to live in the pain alone. thankfully the veil of pain is lifted often and i can see the joy.

there is joy in the sweetness that is Charis Root. when see sings with me at bed time. we are both out of tune, but the sound is so sweet. when she prays with me and thanks God for her mama and daddy and friends at school and then random things like butterflies. when she gives me hugs and juicy kisses. when another mom tells me that she is easy and really sweet. i mean, i know this, so to hear another mom say it feels good. (don't get me wrong...she has her normal 2 year old moments)

oh i love crinkle nose!

there is joy in the way my husband tells me that he sees beyond my physical self (you know the whole no breasts and hair thing). his "i love you" is more meaningful and impactful these days. there is joy in the depth of our intimacy and conversations.

our first i-phone pic @ best buy

there is joy in nature, in God's creation. in the sunrise i only see on our way to Duke. in the birds i seem to notice more on these trips. like the other morning there had to have been hundreds maybe even thousands of birds flying in a flock that stretched possibly a half mile. i'm not exaggerating! i'm so fascinated by why and how they do this. and i know it's all God's design.

sunset at Yadkin River Basin on 85 N

there is joy in spending time with friends who know me and love me so well. who have not been and are not afraid to enter this with me. there is joy in the new friends i've made along the way.

i heart friends

there is joy in baby bellies. and simultaneously there in pain in the longing for babies and the loss of babies. i feel like i have both around me.

there is joy in a restful and lazy weekend at the beach...in sunrises and sunsets, in walks on the beach, in dolphins swimming by the shore, in bike rides, in turtles lounging on alligators, in yummy food, in hot tubs, in good conversation, and in rest and comfy pants.

one of my many beach pics

i remember singing this song at Young Life a lot. these first few lines always stick with me:
There is joy in the Lord
There is love in His Spirit
There is hope in the knowledge of Him

JOY, LOVE and HOPE can and do exist in the midst of suffering and pain. and i am thankful that in the process we are getting to experience it ALL. i'm not afraid to sit in the pain or frustration or sadness or anger that can come with living with cancer. i know it will pass and what takes it's place is peace, comfort, grace, hope, love and JOY.

he's crafty

i didn't know it. he often talks about "i could make that" when we see something cool. but he never does. (although he loves DIY) as we approached Christmas he was at a loss for what to get me and there wasn't much i wanted. i had noticed that my earring collection had out grown my earring tree so i began looking for a new way to display/hold my earrings. i mean, i'm obsessed with earrings. even more so since i went bald. it's my thing now. i need earrings. (even though despite the dangling earrings someone will still call me a sir...really?!) anyway, i looked at etsy and pinterest for some new and fresh ideas. i found something on etsy i kind of liked and emailed it to adam. my intentions were for him to find something fun and buy it. what a surprise to open up a handmade gift on Christmas morning. he had found an antique frame at Sleepy Poet and bought some sort of wire thing and made me an earring holder. when we finally hung it on our wall and i put all my earrings on it, i just admired it for so long. i love it. i love that all my earrings have a home. but mostly i love that my husband got to make me something. there are gaps available for even more.

from the mouths of babes

charis at this amazing age. it's been so cool to see how her language and talking has developed. i mean it's totally fascinating to go from a coo to a sound to part of a word to a full word then to sentences. blows me away. i'm trying to soak it all up and record as much as possible. i'm constantly amazed at her ability to make connections too. she's not at the funny age where she says inappropriate things, but i will be looking forward to that. she's just talking a bunch.

we were driving the other day and she said, "i need a haircut. a big haircut." then she looked at me and pointed to my hair. i said, "i'm not ready to give you a haircut. but you want a big haircut?" she then said, "haircut like you." so, we're thinking of shaving her head. jk.

in the same car ride she said, "you feel better? grocery story medicine in your mouth feel better." so she talks in run-on sentences. basically, when adam's parents were here we had our long duke appt. when we got back she immediately asked me "you feel better?" which sounds so cute coming out of her mouth. adam's mom had told her that we were at the doctor to help mommy feel better. so, she often asks me if i feel better. and apparently we go to the "grocery store" (ie CVS) often to get medicine for mommy.

the other night we met adam for dinner. midway through she wanted to pray. you know she wants to pray when she says, "dear god" and asks us to hold hands. she was doing this funny thing with her eyes, trying to close them but peek, as she prayed, "dear god, thank you for food, yoga and balls." it's really that simple, huh? last night she did the same thing at home, "dear god, thank you for food, thank you for nonni, thank you for my water, thank you for my water. amen!"

she's been getting up early lately. ugh. "i wake up!" then she will call one of us, "daddy! daddy! where arrrrrrrrre you?" we try to tell her she can't get up until the sun does. "where's the sunshine?"

when she gets tickled or we do somethings she likes she says, "do again." and writing that doesn't do it justice with just how cute she sounds.

adam and i spend a lot of time sharing stories of our little girl. it's like we don't want each other to miss out on ALL of her. it never feels like "she" is all we have to talk about. in fact, we have plenty to talk about. talking about Charis is a joy and a relief. we both end up with huge smiles and we immediately miss her. (usually this is on our trips to duke) she's really fun. and i love to think of our story and how God knew just want we needed when we didn't think we were ready to be parents. He knew. He always knows.

twenty eleven in pictures

TWENTY ELEVEN. well it's been a full year. i've been trying to get this post up for almost 3 weeks. so here it is...our year in pictures. it was hard to choose ones from the hundreds i have to show you our year. but it's been so fun and good for my heart to go through the year of pictures. charis has changed so much in a year. she's potty trained and in a big girl bed and talking in sentences. we've gotten to take lots of fun family trips to the mountains and beach. adam & i got to go to NYC. i started the year doing radiation then awaited reconstruction only to realize the cancer was back. then i ended the year starting a new treatment at duke (we don't have pictures of this yet). we celebrated charis' 2nd birthday. we went to new orleans to celebrate adam's best friend getting married. we went to asheville and greensboro to celebrate two friends' weddings. there has been lots of celebrating. we said good-bye to our dear friend, sydney, who is with Jesus. i miss her tons. we've gotten to have lots of family time on bikes, at the park, swimming, hanging out in the yard. adam finished his thesis and got his bound copy. i stopped working for and leading young life. i've gotten to continue sweet friendships with high school girls. charis took her first steps for a cracker at my sister's. we've gotten to spend lots of time with our extended family (parents & siblings). my hair saw lots of styles as it grew back from chemo then a mohawk then bald again. lots of birthdays...celebrated adam's 30th at sir ed's. i got to be on tv a few times. Team Patwa rocked it out again at Race for the Cure. friends road the 24 HOB again for me and Syd. we've laughed a lot and cried a lot. oh goodness what a year! full. rich. deep. unforgettable. i am thankful for every bit of 2011. every bit. looking back at all these pictures reminded me of all the things i am thankful for. and i'm trying to remember to be thankful in all things. all things.

and i anticipate that in the year to come i will have more fun memories, more amazing moments, and more to be thankful for.

so the pictures start from December and go backwards. it's just how i uploaded them. hope you enjoy a glimpse at our year.


so cute with winnie the pooh

she loves her robe from pap and nana

our annual GMO cookie party! love these girls

sock hands!

central park from rockefeller center

at the place from When Harry met Sally

walking the city...new WTC

happy birthday mama! poop hands!

sweet family...aunt rosi, chris and julian

plane trip family photo

our little bug turned 2!

drew brees

apple orchard

the twins turn 1...jada knows how to party

Team Patwa

these little girls fight like a girl for their auntie!

first plane trip with daddy!

carousel ride with paw paw

our little walrus

our friend nora fern! we love her



celebrating reba & allen

asheville sunset

big girl bed. "new bed"

hanging with benny @ caroline's birthday

getting the lawn done

the mohawk!!

the bound and official Thesis!!!

sweet sandy face

my best friend

carowinds for the cure...peace

me and my friend mary genevia

eating yummy summer tomatoes

chemo part 2

pedicure time

nonni came to visit

team Hope for Sydney 2011

my little lady

our friends the bergerons came to visit we love them

MJ hair

enjoying mountain streams

last YL girls beach retreat

enjoying the beach

love riding the bike

belly button easter bunny

swimming with daddy

hunting for easter eggs

post chemo hair growth...crazy

best outside toy ever

sweet cousin Lily

what do i say to this?!

irish car bombs!! happy 30th adam

sweet time at freedom park

enjoying the sunshine

the radiation machine

first steps

just chillin in my wagon

date night...love these

silly family photo!!