Tales of Woe, Tales of Triumph And The Limits of bareMinerals

As I write this, I'm technically cancer free, which is weird because I didn't even do the hard part of my treatment yet.  What does that even mean, Nella?  I've finished two rounds of ICE chemo and I will not need a third.  I had a CT scan and a PET scan and they came back negative.  All good news.  Great news.  I've begun the shots that will get my stem cell production into overdrive and then force them out of my bone marrow and into my bloodstream.  I'll get a special catheter/line placed in my chest this Tuesday and they will begin to collect the stem cells.  This is such a whirlwind.  I'll be admitted the 31st of this month for the GIANT chemo and transplant.

I'm gonna do the rest of this post in reverse chronological order or maybe just weird disjointed stream of consciousness order.  Cut me some slack...I've got Chemo Brain over here.  I'm sure there are more literary ways I could do a post in reverse chronological order and I'm pretty sure I would be capable of conjuring them up and executing them but that's too tall an order right now.  So here we go, you know the first part, currently in remission and starting Phase 2 of treatment...

Tales of Woe:

I just came home after spending 2 1/2 weeks at my parents' house.  TWO AND A HALF WEEKS.  I came home from my last chemo on a thursday and our 7 year old Madeleine woke up throwing up that following Sunday.  Next thing you know, 2 1/2 weeks had passed as some kind of bug worked its way through the entire family, including poor Michael.  Michael has been, as usual, a hero.  He's been sick himself, working during the day, taking care of sick kids at night and in between bouts of sickness he's taken ALL SIX KIDS to THE BEACH and STRAWBERRY PICKING ALL BY HIMSELF.  Now I'm home and it's glorious.  I get tired really easily so I can't get much done, but I'm in my own house and the kids are just happy I'm around.

This past Friday I had a Bone Marrow Biopsy which is my fave (lies).  They did it right in the Lymphoma Clinic at the hospital, so I got my good news about my scans from the nurse practitioner and the oncologist and then they got me set up for the biopsy.  Last time I had one I was pregnant and I couldn't have any kind of medicine to help me relax.  I just had local anesthetic.  This time I had Ativan on board and they gave me a Fentanyl Lollipop.  I'm not kidding.  That is a thing.  Schedule II Controlled Substances in lollipop form is an actual legitimate thing.  I thought this was going to be great because Bone Marrow Biopsies really hurt and I thought this was going to help it hurt less.  I'm not sure if it worked, because it still hurt, which--whatever that's fine.  I kept eating the stupid lollipop because I didn't feel like it was working.  They don't really give you any guidance, they're just like "Hey, here's a Schedule II Controlled Substance in a lollipop, have at it."  So, anyway I didn't think it was working.  Until the biopsy was over and I tried to get up.  It was working.  I felt pretty loopy, but I gathered myself and I had Michael to lean on.  They sent us down the hall towards the reception desk and as I was chatting with the receptionist everything got sparkly and weird and I said "I think I have to sit down".  Then ALL the nurses in the whole clinic came out of nowhere to get me into a chair and give me emergency apple juice.

Even though I'm supposed to be going in reverse chronological order you can't have a proper laugh at my expense if I don't tell you that exactly 2 weeks before this I passed out in the exact same spot, so when we came into the clinic this time I was joking around and talking a big game about how there'd "be no shenanigans."  Thud.  <---That's the sound of me falling off my high horse.  AGAIN.  I perked up from the apple juice and they let me go and then I was going to have lunch with Michael!!!  I didn't really feel right but I thought I'd shake it off in the car, because this was the first time I'd seen Michael in a week and a half and I wasn't cutting it one minute short.  We went to Wegmans and I was going to get Chinese Food but I thought better of it when I got there.  I should have told Michael to take me home right then, but I powered through it because I missed Michael so much and I wasn't messing up our Bone Marrow Biopsy Date Goshdarnit!!!!   I worked really hard at keeping my eyes open, eating my soup, and being conversational while we were at Wegmans and then poor Michael drove me home to my parents' house.  Poor, long suffering, patient Michael.  We got about 2/3 of the way there and suddenly I realized something was NOT RIGHT.  VERY NOT RIGHT.  Thank goodness we're not very good at keeping our vehicles tidy because I quickly located a bag and THREW UP IN THE CAR.  Into the bag in the car but still.  Ugh.  It was really bad.

Michael pulled over and helped me and cleaned the whole thing up and put me in the back of the car where I'm pretty sure I promptly went to sleep.  I hope I did.  Otherwise I was super fun half conscious Nella who doesn't know how to just ZIP IT because there's nothing she can do to fix anything.  Half conscious Nella would have been slurringly apologizing to Michael over and over and OVER and Michael would have been within his rights to wish half conscious Nella was straight up UNconscious.  Michael is a gentleman and won't admit which one I was.  We finally got back to my parents' house and Michael put me to bed, where I stayed for 5 hours.  That night I ate some dinner.  Threw it up.  I slept hard the whole night and woke up to a revelation.  Fentanyl and I are not friends.  I might have had a hard time figuring this out except that I had the exact same pukey sleepy reaction to it when it was in my IV pain button after I had the biopsy on my lymph nodes a couple months back.  They said "hey, no more Fentanyl for you we think it's making you sick." and I was like "no problem I hate it."  I didn't remember the name of it because I thought it only came in pain buttons.  I didn't know they give it out in lollipops because WHY WOULD I EVER THINK THAT!?!?!?.  So Fentanyl is the devil and I hate it.

What other gross things have happened that I can tell you?  OH!  I'm part midwesterner now!  I have one liter of red blood cells from Davenport, Iowa coursing through my veins, I also have one liter of locally sourced blood because I'm trendy like that.  I also have one bag of platelets that are not my own as well.  Oh my gosh you guys it is SO GROSS.  Everyone acts like it's so casual: "Dum dee dum putting someone else's blood in you no biggie." but let me tell you it is NOT CASUAL.  You can see the whole thing--you can see the bag of blood just hanging there on the IV pole being bloody, you can see the blood going through the line and INTO YOUR BODY--and I'm here to tell you it's disgusting.  Miraculous, and smart, and life saving, and DISGUSTING.

So remember up there where I told you that Bone Marrow Biopsy day was the 2nd time I sent the nurses running for the emergency apple juice?  Well, here's the story of the first time.  You see, it turns out that IF you go and get chemo for three days straight and can't swallow anything because air is gross, water is gross, opening your eyes is gross, food is obviously gross, rolling over in bed is gross and almost impossible, etc., getting up at 6:30am the day after you are discharged to go back to the hospital so you can get blood drawn is not the best idea.  I mean, you have to go back to the hospital for your lab check.  They have to check your blood, but 7am is not the best time for it.  You can't go get blood drawn if you haven't eaten anything in 24 hours.  You definitely can't walk around the hospital unaided after having blood drawn and then wait in a waiting room when you JUST finished 3 days of chemo and haven't eaten for 24 hours, but this jackass typing right now thought she could.  It was on the schedule so I thought I should.

I woke up that day, sort of.  I ignored that I could only walk short distances without feeling lightheaded and that I had to sit(slump) on the toilet to do most of the getting ready.  I managed to get dressed and put on my bareMinerals.  I've written before about how much I love bareMinerals.  LOVE.  I put them on like armor (very sheer natural armor) before I head out in public (which is the hospital 95% of the time these days) so that everyone can exclaim over how "not sick" I look.  Particularly at the hospital I feel like it's a subliminal message to everyone there about what abysmal fail-y failures they will be if they don't get me better.  Overall, it works great.  Unfortunately even bareMinerals have their limits.  It turns out that if you turn gray (or grey), begin to sweat profusely, and then lose consciousness--bareMinerals can't hide that.  Don't write angry letters to Leslie Blodgett.  Essentially bareMinerals can't camouflage arrogance and stupidity.  I'm sure they're working on it.

Luckily I turned gray (or grey), began to sweat profusely, and lost consciousness in my clinic where all the nurses know me.  I ended up having to get fluids through my port and ended up breaking a streak I was pretty proud of.  This was the first time I threw up as a cancer patient.  As you learned in the tasteful missive you've just slogged through, it wasn't the last.  I have a tendency to puke when they flush my line while using my port.  I found out if I sniff an alcohol pad that sometimes I won't puke, so if you're a fellow cancer patient who forced yourself to read through all of this for useful information...sniffing alcohol pads when they flush your port might help you not puke.  More importantly, if you're a cancer patient you just read through all of this looking for useful information, the alcohol pad tip is useful, but this one is more important:

Listen to what your body is telling you and stop being an arrogant stupidhead who thinks they can somehow will themselves into being impervious to the effects of their treatment.  You'll end up saving yourself some humiliation and discomfort.

Tales of Triumph:

You know who I haven't told you about lately?

Remember me?

It's hard to believe that Avery Hope will be ONE YEAR OLD next week.  It's hard to believe that baby was on board when I started my first treatment but it's true.  She is doing great!  She's a chubby little trouble maker as you can see.  I'm amazed that just one year ago she couldn't eat, maintain her temperature, or BREATHE on her own.  Look:

Chubby Trouble Maker

A year ago she couldn't eat or breathe...now she can rifle through the changing table:

Breathing, obviously eating well, and STANDING UP

So, anyhoo, we keep plugging away, taking each day as it comes.  We appreciate your prayers so much.  Sometimes, truth be told, I feel pretty low, but I continue to be amazed at the peace and joy that can underlie even the yuckiest of circumstances.  This situation stinks, but we are so incredibly blessed and surrounded by so much love.

How can I feel low for long when one of my oldest and dearest friends, Joelle, who is a doctor, wife, and mother of two small children is TRAINING FOR A MARATHON--THE MARTHON--the New York City Marathon actually, in my honor, to raise money for the  The Leukemia & Lymphoma Society’s (LLS) Team in Training.  Please consider supporting her.  If she reaches her goal by August 1st, she and her husband will be donating $500 to Roswell Park Cancer Institute, which is where I'm being treated.  Isn't she amazing?   She could lose a toenail.  Do you know that sometimes happens to marathon runners?  *JOELLE*  Please please do not lose a toenail.  I can't have that on my conscience.

7 Quick Takes Volume Two: Sheepish Edition

Returning sheepishly to 7 quick takes after a blaze of posting glory, or at least posting.  I'm sorry I've been maintaining radio silence.  There is just no rest for the weary.  So without further ado:

1.  

Avery was finally baptised!  I had wanted to have her baptised in the NICU, but I didn't because I didn't want people to think I was crazy which I regret, but I'm glad it's done now.  Sarah the weirdo and her husband are Avery's godparents which makes her pretty darn blessed.  I don't think you can be pretty darn blessed, but if you can, Avery is.

Anna isn't really that short but her new thing is not standing up straight for pictures.

The gown Avery is wearing is a family heirloom.  My Dad wore it to his baptism 62 years ago.  I wore it, my 4 siblings wore it, and all of my 6 children have worn it.  It is very beautiful and at this point very fragile.  It's also made of a silk satin and covered in lace because boy or girl, italians will dress for the occasion.  It has a slip, a gown, and a coat, it also has a hat so the baby won't catcha the draft, but the hat is in rough shape after all these years.  Let me tell you, a baby wrapped in 3 layers of silk satin is so slippery it's like trying to baptize a greased pig.  But what a beautiful little piggy!

2.  

I've been exercising regularly, probably more than I have since college, because health and stuff.  I've been taking PIYO(combination pilates/yoga), swimming laps 2 or 3 times a week, and yesterday I took an interval training class.  I'm able to do that without breaking the bank because we belong to our local YMCA.  There is nothing glamorous about the Y, certainly nothing glamorous about our little Y that could, but we really love it.  It really is such an awesome resource for families.  The membership is affordable and if you're a member you get a break on the fees for all of the kids sports and classes on top of tons of free group exercise, use of the pool, I could go on.  Really, if you're looking for a family friendly alternative to a traditional gym you must check out your local Y.

3.  

Yesterday I walked into my bathroom to find that someone had shaved (shaven?) one of my make up brushes with their Dad's razor.  I don't know who it was but I have a pretty good idea.  I really thought I'd seen it all, or most of it.  Some of you are saying "you already posted this on facebook".  I know, but, THEY SHAVED MY MAKEUP BRUSH.

4.  

Please keep praying for Ben:

Pray for Ben and his family.

and Ava:

Pray for Ava and her family.

Could you also pray for my friend Sweetie?  She just had a double masectomy and is on the road to recovery.  Please pray for her continued healing.

5.  

You know that saying about resting on one's laurels?  Some people don't want to rest on theirs, but I'd like to make a little nest out of mine, scant though they may be, and just snuggle up in there and take a nap.  It turns out though, that there is no rest for the weary my friends.  The reason this blog has been languishing of late is that I'm working on a BIG project.  It's totally nuts and it is something that grown ups do, the competent kind, not kooks like me.  Some dear friends of mine, dear friends who were there that night at Wegmans, and I are opening a schoolish.  What is a schoolish?  It's really called a Learning Center and it's a place that offers History, Literature, Science, and Latin for 2 half days a week.  There will also be electives like art and music in the afternoon.  Why a schoolish, I mean Learning Center?  It's a way to have the best of homeschooling and traditional school.  

I still can't believe this is happening but it is happening because we are making it happen.  We're in the midst of incorporating, filing our 501c3, choosing curriculum, and on and on.  My Dad used to say that he always felt the same inside even though he grew older on the outside and I've always felt that way too, but I've never felt it as keenly as when I was sitting across a conference room table from our attorney discussing our venture.  I kept expecting her to suddenly say: "Wait just a minute young lady...WHERE IS YOUR MOTHER?" but she didn't.  This isn't what I expected to be doing a little more than 5 months after finishing chemo, but I am.  It's taking up most of my free time right now.

6.  

April 2nd was the anniversary of when my neck got filleted to get my lymph node out.  A year.  I can't believe it.  The 16th will be 6! months since my last Chemo.  I had a CT scan last week and I go to see the oncologist today so she can tell me to my face that I'm still in remission.  Could you pray for me?  I get a bit of anxiety every time I have to go there.

7.  

I'm sure you haven't figured out from this blog, but Jennifer Fulwiler is my favorite blogger ever.  She is the hostess of these here quick takes and she has a book coming out about her conversion from lifelong atheism to Catholicism.  It is recommended by Dean Koontz and Gretchen Rubin people!  And then, AND THEN! she was all like, oh, I think since I just wrote an awesome life changing book I'll write another awesome life changing book to go with it.  Right now if you pre-order her memoir: "Something Other Than God: How I Passionately Sought Happiness And Accidentally Found It", you can get a free e-book "The Family First Creative: 42 Tips For Following Your Dreams While Putting Your Family First".

What are you waiting for?  Do you hate learning important stuff?

I just wrote this whole thing under toddler attack so sorry for formatting etc...Go see the amazing Jen for more, better written quick takes!

4 Months And A Day

Yesterday was 4 months since my last chemo.  In some ways I can't believe it's been that long and in other ways it already seems like a lifetime ago, like elementary school or something.  It is both far in the rearview and and ever present.  It feels like it's way in the past because I'm exercising again, Pilates once a week for now plus swimming laps several times a week.  I'm really and truly The Mom again, driving all over kingdom come and feeding and clothing and schooling and just Momming all day.  I arrive at the end of the day tired and overwhelmed and pretty sure there is no way I can do it again the next day, but it's not because I'm sick, it's because that is the life of a Mom of small children.  Many days go by where I wouldn't think of cancer at all if it weren't for my short hair and little reminders.  I still have bruises on my arms where the IV's were for my last 2 treatments.  Seeing them reminds me of the serious stuff they were putting in me not to long ago.  Most days I still can't wear my wedding rings because I still puff up from poor circulation.  This is improving as I exercise more.

My hair has really come in and I rarely cover my head anymore.  This is a new development in the last few weeks, as my comfort level with my new coiffe grew and the kids' did as well.  The first place I ever went with a bare head was to Pilates at our YMCA and it was no big deal because almost everyone else in the class had short hair.   I have my italian genes to thank for the lightening fast regrowth I'm experiencing.  Right now I look like Fantine, but a really romanesque Fantine so I guess that makes me Patti Lupone?  Seriously, could it get any better?  I would argue that no, it could not.  But, I couldn't find a picture of Ms. Lupone as Fantine post hair selling when I made this:

Anne Hathaway as Fantine vs. Do you know how hard it is to take a profile selfie and also my neck isn't that short but I had a cowl neck sweater on.

So that's my hair update.  I'm really feeling better all the time.  Avery continues to do beautifully and is now in the 22nd percentile for length and the 40th for weight so not only is she on the chart...she is ON the chart.  She's our little sweet fatty baby.  As for our 4 month milestone, she's not that impressed:

What's the big deal Mom?  Aren't we just always going to be kicking ass on a daily basis?

Finally, please pray for 2 precious children facing difficult diagnoses:

First for Ava who was diagnosed with brain cancer a few weeks ago.  Her Dad Jeff is a friend from my days as a cheerleading instructor with the National Cheerleaders Association.  Jeff and his partner brought Ava to the ER and were told she had a brain tumor the size of tangerine.  The tumor has been removed and now they face treatment.  Please pray for Ava, her dads, her sister, and everyone who treats her.

Please also pray for a little boy named Benjamin.  I don't know Benjamin or his family personally, but we have many friends in common.  Benjamin is another child whose parents found out their child was facing brain cancer.  Benjamin's cancer is very aggressive and he, his parents, his siblings, and his treatment team need our prayers.  Please pray for them.  That link is for an event that already passed, but please continue to pray.  

Hope all is well with you dear readers!

Happy New Year!

This past Saturday marked exactly a year since the chiropractor felt a lump in my neck.  It's surreal to look back now and realize a whole year has passed.  This year will be full of "a year ago today"'s.  The 16th of this month will be 3 months since I've had chemo, and also one year since I was crying in the stall of a Wegman's bathroom.  I know a lot of people would expect me to be all "See ya 2013, don't let the door hit ya blah blah", but I'm really not.

Instead of seeing 2013 as the year I had to ask for help, I want to see it as the year I learned just how much help there was from so many unexpected places.

Instead of seeing 2013 as the year I had cancer, I want to see it as the year I beat cancer.

Instead of seeing 2013 as the year I faced a crisis pregnancy, I want to see it as the year we welcomed Avery Hope into our family.  Seriously...she's gone from this:

1 Day Old: 4lbs 4oz

To this:

She turned 5 months old on Christmas Eve.
She's closing in on 15lbs and eating and breathing LIKE A BOSS.

I want to look at it as positively as I can.  Is that easy? NO.  In many ways looking forward to 2014 is even scarier than looking back.  Do I have plans for 2014?  I guess.  Since I last wrote I've felt like I was in one of these:

I've been swimming and swimming and feeling like I was getting absolutely nowhere.  That makes it hard to make plans, or more accurately, to live up to the plans I made when all I could do was lay around and tappity tappity on the keyboard.

Sorry I dropped off the face of the planet.  It was that, or drown.  You don't really need me to tell you that the last 3 months contained Halloween, Thanksgiving, and Christmas.  You have a calendar.  It's just that, I was also learning to be The Mom again.  I've been learning to be the Mom again in a totally new family than the one I had when I started chemo.  Everyone is older and we have new schedules and new needs and we also have a new baby.  I almost forgot about that part.  I was crying to Michael about what a loser I was because I don't have it all together now that chemo is over and he was like: "Do you ever have it together before a baby turns 6 months old?".  Good point.

Anyway, I'd like to continue to write here, I just don't know when or how to make that a regular thing, at least in the short term.  I just said to my friend Sarah that in 2013 I was just a passenger.  In 2014 I'm learning to drive again and I wanted to be a better driver than I was before.  I have to figure out this new Nella I'm walking around in and how she ticks.  I have to figure out how to live up to the gift of remission.  People have contacted me to ask if I'd be continuing this blog.  Some asked me to please continue this blog...seriously...I'm not even kidding.  I'm going to try, I'm just not sure how much I'll be able to write at least in the short term.  Most attempts of mine to write lately result in my brain being like this:

I'll keep trying anyway.
 I'm not sure if that means I'm persistent or have the intelligence of a Hamster.

Remission is weird.  Everyone thinks cancer is done but it's really not.  Not for me anyway.  Don't get me wrong, remission is a blessing and there are many who never get to this point and I am so grateful.  At the same time, remission doesn't mean I'm out of the woods.  I'm not considered cured until I've made it 5 years with no detectable signs of cancer.  I just had a follow up CT scan and I go for a check-up and to get the results Friday.  I have to live my life like cancer couldn't just pop back up anytime, and that's what I intend to to,  but it's hard when I'm still going for scans and check ups every few months.  I'm still living with the physical effects of chemo.  I wake up with nerve pain in my arms at least once a night and my circulation is not great.  I can't wear my wedding band because my hands are a bit swollen.  My cognitive function is still in the crapper.  My energy level is improving and the cognitive function is as well, just not as fast as I'd like.

In many ways it's like this cancer thing is just starting to happen to me because as the physical effects slowly disappear, everything that happened is starting to really sink in.  When I was in the middle of it I was just pushing pushing pushing through being positive positive positive and chirp chirp chirping that I was blessed blessed blessed when I wasn't asleep asleep asleep or loopy loopy loopy.  Now I'm trying to be Mom again and sometimes it just hits me all at once and I'm just like "DID THAT REALLY ALL JUST HAPPEN?!?!?!?  WHY ARE WE ALL JUST STANDING HERE ACTING LIKE LIFE IS NORMAL DO YOU KNOW WHAT KIND OF CRAZY ASS CRAP CAN HAPPEN TO YOU AT ANYTIME??????  OH MY FLIPPING GOODNESS THE LAST YEAR SERIOUSLY JUST WENT DOWN LIKE THAT?!?!?!?!?!?".  And then I feel bad.  Because I'm in remission and I should feel happy and grateful.  I should feel light and free but instead I feel a huge weight of responsibility.  I need to live up to the gift of my remission.  That's what 2014 is about.  That's what every year from now on will be about.  That's what every year should have been about all along and should always be...living in a way that reflects gratitude for the gift that is my life.

Obviously 3 months out from the last time they poisoned me isn't the best time to expect myself to be writing a whole lot, exercising non-stop, or most of the other things I dreamed I'd do after remission back when all I could do was lay in bed all day.  I'll figure it out, bit by bit, and I'll try to share it with you when I can.

Happy New Year dear friends!

Chemo Vs. Hair: Chemo Wins...Chemo Vs. Me: I WIN.

Look at this lady:

Losing her hair and loving it?

Is she for real?  First of all, she has her purse.  Is she going to the store?  Should someone tell her you shouldn't be staring people down like that no matter how pretty you are?  What a weirdo (no offense).  I mean, I get it.  She's confident, she's losing her hair and loving it.  I guess I wish I could feel that way about it, but I don't.  Maybe that's better for Michael.  Maybe if I felt that way I'd go around starting fights in supermarkets because I'd be aggressively staring people down and making children cry.

My hair started falling out about a month ago.  It is all kinds of gross.  At first it wasn't much, but enough to know it wasn't my normal shedding.  Then one day I took a shower and handfuls and handfuls just came out in my hands as I rinsed out the shampoo and then the conditioner.  Then I brushed my hair when I got out and a good months worth of hair was in the brush.  As my hair dried, you couldn't tell.  You couldn't tell I'd just washed a baby wig's worth of hair out of my head.  I could have saved it and knit it into a wig and sold in on Etsy.

Too far.

 Do you remember when Suzanne Sugarbaker got the wig for Charlene's Baby?  You don't?  That's why you feel that emptiness inside that you can't ignore.  Do yourself a favor and watch Designing Women reruns:

The Fabulous Delta Burke as Suzanne Sugarbaker

Anyhoo, my hair is coming out all over the place, but I still look like I have hair.  Kind of.  My follicles are like clown cars.  If anyone else lost the amount of hair I have they'd be bald two times over.  Instead I'm very thin on top with long hair hanging down.  I should have gotten a preemptive haircut but it seemed wasteful to spend money on something that would just fall out.  That's how I feel washing my hair.  I'm just washing and conditioning garbage.  Shiny, silky garbage.  I've gotten to the point where there are 1/2 inch wide bald spots when I pull it back, but if I leave it down I leave a trail of hair everywhere I go and sometimes I look down at my shirt and I'm covered in hair.  Besides, honestly, if I leave it down I look like Vigo from Ghostbusters 2:

Killing it on the late '80s references.

I don't want to look like Vigo.  Actually Vigo has more hair than I do, so I wear a headscarf, which feels pretty conspicuous, but I have too much hair for a wig to sit properly.  Fun conundrum.  Today is my last Chemo...YAY!!!, but this one will likely force my hand in the hair department.  Of course, I've been saying that for the last month.  Seriously, clown car follicles.  I cannot stress enough the startling quantity of my own hair I have washed and thrown away.  Yuck.

Ok, enough gross.  You're probably like shut up about the 80's and hair loss and show us the baby!  Ok!

Photoshoot Fail
Luckily she's a cutey.

Look at that chubby girl!  She's 12 weeks today and over 9 pounds!  She beat Chemo too!  Today I get my last Chemo and then I get to start getting back to the new normal.  Just a few weeks of feeling cancerish left, and then you can start expecting cogent thoughts from me and I can clean bathrooms and drive places!  To recap:

Chemo Vs. Hair:  Chemo Wins

Chemo Vs. Cancer:  Chemo Wins

Chemo Vs. Me:

I WIN!!!!

Home Sweet Home

*These are not blog quality photos.  They are backlit photos from my phone because that's just how we do.  

This past Wednesday we finally brought Avery home after 5 weeks in the NICU.  Her homecoming was delayed twice before we were finally able to pack her up and bring her home to her flock of adoring fans.

It's amazing how someone so small can command such undivided attention.

Michael and I went to get her and she was greeted by many squeals of excitement and hands reaching out to touch her and arms reaching out to hold her and just so so much love.

From Left to Right:  Madeleine, Anna, Owen, Avery, and Julia (Adam not pictured, he doesn't feel he owes you an explanation for his absence.)

She became briefly acquainted with each of her siblings and had a nice snuggle with each of them.  These poor kids have been waiting FOREVER to finally hold their sister.

Madeleine holding Avery, Anna on the Right

Anna and Avery

Julia and Avery, the two littlest girls

Owen and Avery

Thank you so much for all of your prayers for our sweet girl!  We are so grateful.  She is fitting right in and we can't imagine life without her.  Some of you maybe wondering why there are no pictures of Adam.  He was napping when she came home and right now all of his interactions with her require two adults to manage because he JUST LOVES HER SO MUCH!!!!  It's scary and beautiful all at once.  At some point I'll try to get a picture of the two of them together, but it might be a while before that's possible.

Like A Toddler With A String Cheese

Yesterday Adam woke up from his nap in a mood.  You know when toddlers wake up and they decide they want everything and nothing simultaneously RIGHT NOW?  It was that kind of mood.  I picked him up out of his crib and he was doing that whiny cry and he put his head on my shoulder.  For 2 seconds.  Then he started the back arch gravity drop but not the full back arch gravity drop.  He did the initiation of the back arch gravity drop that causes you as an experienced parent to start to put them down so they can toddle merrily on their way.  Wrong move idiot.

Judge Judy saw this next part coming from a mile away.

 Responding to the back arch gravity drop cue resulted in a blood curdling "NOOOOO!!!!!  Mooooommmmommmmm!!!!".  So this is how we're going to play it.  I reversed course and scooted him back up the 1/2 a millimeter I had shifted him down because when you start playing this game 2 year olds become like highly sensitive scientific equipment capable of detecting phenomena at the molecular level.  This whole interaction may not have even occurred on any physically perceptible level, it happened so fast.  As soon as I scooted him back up he started the back arch gravity drop and around we went.  So I did what any veteran parent does who wants to teach their children to deal with their unpleasant emotions in a functional manner...I brought him downstairs and tried to distract him with a snack.  Future food issues anyone?  As long as they come with a side of cheese.   In Adam's case, string cheese.  Lately string cheese has been Adam's fave.  I won't even begin to tell you the rate at which he can put those down.

So we went to the fridge and he freaked out over opening the fridge himself.  So I tried to put him down so he could open it himself.  So he freaked out over me trying to put him down and did the super abs thing where they lift their feet higher and higher as you lower their butt closer and closer to the floor.

Like this with less attention to form and more rage.

So I opened the fridge and got the cheese and tried to set him down to open it so he freaked out and did the abs thing again.  So I just handed him the string cheese because sometimes when he's feeling reasonable he likes to try to open things himself and he tries for a short time and then he asks me to do it for him.  I figured it would just go like that.  Seriously.  Idiot.  Hold on to your hats people, it did not go like that.

Adam would put the string cheese in my face and yell: "CHISS!" which I would interpret as "Mother, please open this string cheese." and so I would start to take it from him to open it "NOOOOOOOOOOO!!!!".  sigh.  "CHISS!" Mommy attempts to open it.  "NOOOOOOOO!" SIGH.  "CHISS!!!!!"  Mommy attempts to open it.  "NOOOOOOOO!!!!" On and on and on and on and on.  Until he was in college.  Actually for like 10-15 minutes, I'm not sure.  Did I mention my Mom was watching this whole thing unfold?  For some people Karma is a b****.  For my Mom Karma is a rainbow butterfly who hands out all the candy you want.  Which is what she deserves.  She observed this whole scene with a mixture of pity and amusement, with tears in her eyes while trying to stifle a laugh.  You know what?  Right on, Mom.  I get you.  I'm sorry for every time I did that to you.  You are a saint.  A saint who gets to taste the sweet sweet nectar of revenge but takes pity on her former attacker.

What is this about?  Are you going to turn into one of those Mom bloggers who're all like "Toddlers are unreasonable jerks woe is me?  No, I won't, because it hit me last night that I am God's unreasonable toddler.  Look at this girl:

She's wearing a T-shirt and using a Pacifier!

Avery continues to grow and progress every day.  Just like I've been begging God for her to do.  She is doing really well.  In the next few days she will be moving to an open crib and she has reached the 5lb mark.  She is beginning to learn to feed from a bottle and doing so well with it she gets to try 4 times a day.  They are beginning the process of removing her from respiratory support by reducing the flow in her nasal cannula and just today they stopped giving her caffeine.  Which as an aside: I find hilarious.  Premature infants sometimes need caffeine to help them remember to breathe.  You and me both, Avery.

When they took her off of the ventilator and switched her to the air flow in the nasal cannula it was scary because her respiratory rate on the monitor didn't look perfect and predictable like a robot anymore.  It looked variable like all human activities do.  It went fast and then slow and then sometimes she would just be like "meh, breathing is dumb" and take a short break and I would FREAK OUT and the nurses would assure me everything was fine.  I'm sorry but there is nothing fine about that and I don't care how fine it is.  It's scary.  But she continues to handle it well and they continue to wean her off of support and all my prayers are being answered.

I begged God to help my little girl outgrow those machines when she really wasn't ready (CHISS!!!), and now that she needs them less and less everyday I'm getting scared about the idea of her doing it all on her own (NNNOOOOOOO!!!!).  I begged God to be able to bring her home (CHISS!!!) and now that we are moving closer to that goal I'm not so sure I'm ready (NNNNNOOOOOO!!!!!!).  Poor God.  It's a good thing he's so patient and loving.  Oh.  Right.  He is patience and love.

Adam and I did the string cheese dance for awhile.  He just hadn't felt right since he woke up from his nap.  Maybe the girls playing woke him up before he was ready, maybe he was teething, maybe his bottom was sore, maybe he just had a bunch of big feelings and didn't know what to do with them.  I held him for a long time and offered to open that damn cheese for what felt like a very long time.  Eventually, between sitting in my lap and seeing that Mom would respond with love and patience (on the outside) no matter what, Adam calmed down.  Eventually he toddled off to entertain himself for awhile.

I haven't felt right for a while and I've had big feelings I didn't know what to do with.  I asked God for things and when they seem to start happening I get more feelings I don't know what to do with.  God is so patient with me.  He loves me even when I start to turn from the very things I asked for.  He loves me even though my first instinct when things happen that I don't understand is "Where are you God?".  He knows we will do this dance until the day I die, and He sits with me and is present with me anyway.  He loves His unreasonable toddler.

Health Updates On Mommy And Avery

The cool kids historically make really poor choices so...not buying it.

I went back to Chemo yesterday.  BOOOO!!!  Yay.  No seriously yay.  The sooner I start back up again the sooner I'll be done.  Here are some updates on me:

1.  I had a PET Scan last week.  It was a pretty straight forward experience.  Being stuck in a tube was not as bad this time because I was smaller and more agile and felt capable of scooting out of there if things hit the fan.  Plus, the part in the tube was only 25 minutes.  In case you're unaware, when you have a PET Scan they need to inject you with a RADIOACTIVE SUGAR (or tracer) and you have to sit around and let it circulate through your body but not move too much so that you don't metabolize it before the test.  It is very odd to sit there and be casual while radioactive stuff that came in a giant looking syringe THAT IS ENCASED IN LEAD is circulating through your body.  There is no lead in my body so...that's math you shouldn't do when you're about to be injected.  Overall though, it was pretty easy.  At least I wasn't getting stabbed in the butt.  Any results?  Well, it turns out that I really do have cancer and this was not all just an elaborate misunderstanding hinging on the mass overreaction and systemic incompetence of multiple medical organizations that I was hoping for.  They feel it showed signs of progress, but really this needs to be looked at as a baseline because it is the best imaging I've had done since this started.  

2.  I went back to Chemo yesterday.  Did I mention that yet?  Ugh.  It was really hard.  I can't begin to tell you how hard it was to go back.  I was coming off of a 4 week break and during the last 2 weeks I've had the most energy I've had since this started.  I could think so clearly.  Chemo Brain is real and it is so annoying.  It was so nice to have the cobwebs cleared away for a while.  I don't want to go back to that and I already am and yuck.

(This is a warning to my brothers: this next section is about veins, skip this and go to the part about Avery)

3.  I need advice from Chemo Veterans and Medical Professionals about my veins.  I have terrible ornery veins.  There are the expected effects of the chemo on my veins which is that they get hard and yucky at each site I've received chemo, but my veins are apparently just really a puzzle.  The nurse always gets excited because they put heat packs on them and they jump right out and look good, but that means nothing.  The nurse will get the line in, get a great blood return, and then it doesn't work or it is really painful when the meds start pushing or the line blows.  Yesterday was my second chemo day where it took 4 tries to get a line placed.  It rarely takes less than 2 and I won't even count the day she "got it" in one try because after how well my veins tolerated the actual chemo yesterday I realize the day the line went in on the first try was way too painful and I had nerve pain in that arm for the next week and a half.  A Medi Port is not a great choice because I should only have 5 treatments left.  It doesn't seem like the best idea to get something surgically implanted that I will have to keep for a minimum of 6 months for only 10 more weeks of treatments.  A PICC line is out of the question because I just can't have that hanging from me with little kids around who could pull it out of place.  I know that the first thing I have to do is be more assertive with my care givers, but, if you know stuff about veins...is this something you're familiar with?  I know it has something to do with how I'm put together, I'm really full of extra valves or something.  Avery was a similar puzzle when they tried to get her PICC line in.  Any tips on how to communicate this situation more effectively with my caregivers?  I'd appreciate it!

Enough of that, here are some updates on Avery! (Let's face it, that's what you're here for and I don't blame you!)

That's her IV pump TURNED OFF!!  She is not receiving any IV medications, nutrition, or fluid anymore so her PICC Line is out and her IV pump is GONE and has been since Saturday!  She is getting all her feeds from her feeding tube and will be able to try a bottle this weekend!  She has stayed on her nasal canulla and is getting a medium flow of air but she is doing great with it.  She's also gained back the weight she lost initially after birth and has now exceeded her birth weight tipping the scales at a whopping 4lbs5.5oz as of today.

Avery Hope, 13 days old

She's so alert after our Kangaroo time and we are so happy for the progress she is making.  We still have a long road ahead but our precious girl is doing beautifully!  Thank you so much for your continued prayers and support!

Lessons I'm Learning in the NICU

Geezaloo that last post was a downer.  Thanks for your kindness, love, and most of all your prayers.  You are the best.  This NICU thing is yet another crucible, I'll tell ya, and I'm learning so much.  Have you heard of Glennon at Momastery?  Well, if you haven't she is a recovering alcoholic and bulimic and she is a Mom and an author.  She captures so much about life so beautifully, and one of the best ideas about life she has expressed is the idea that life is "brutiful".  Brutal and beautiful, and oh my goodness that describes the NICU perfectly.  The NICU is absolutely brutiful.

Before Avery was in the NICU I would look at pictures of babies in the NICU kind of out of the corner of my eye, because it is a brutal sight.  That tiny person, so incredibly fragile, all those wires and tubes and contraptions that look so uncomfortable and even painful.  Now my daughter is one of those people in that brutal situation, and she is so beautiful.  They all are.  I can't say I don't notice the wires and tubes anymore, because I do, but they don't bother me because the job they do and the person they do it for are so beautiful.

Anyhoo, lessons I'm learning in the NICU:

1.  It's Enough To Be Strong Enough to Try

When Avery was born she was intubated because she needs the help of a ventilator to breathe.  We knew to expect this because babies born at 32 weeks aren't strong enough to breathe on their own.  There are different levels of ventilator assistance and I was anxious to get that tube out of her throat.  Talk about a brutiful sight.  When she was a day old they decided to take out the tube and have her try a nasal cannula instead.  I was over the moon!  This was it, this was our first step forward towards bringing her home!  It was progress and it was awesome!  I blabbed it on facebook and went to bed feeling like this would all be over soon.  In the morning I called to check in with Avery's nurses and found out she had been re-intubated.  Cue tailspin.  We were moving backwards!  She wasn't strong enough!  I really struggled that morning.  It was such a disappointment because I thought we were Moving Forward.  We've now been through the extubation/re-intubation cycle twice and this afternoon we may go through it again.  What I've learned though, is that when she's re-intubated that's ok.  Just the fact that they thought she was strong enough to try is a success.  Just the fact that the neonatologist thought it was possible to try is positive.  I see now that we will go through this forward and back many different times with many different procedures and that is ok.  Our baby girl is learning how to live on her own, and that is a complicated and difficult process.  Life is like that isn't it?  Learning to live is hard work, even out of the NICU, even at 33 years old.  Our little pixie can't even breathe on her own yet and she's already teaching her Mama an important lesson:   Sometimes being strong enough to try is the success, even if the result looks like a failure.

*Since I first wrote this Avery is finally on the non-invasive ventilator!  It took three tries and now she is doing well with it.  Yay!

2.  There Is Always Someone Who Has It Worse Than You

It's hard to see Avery all hooked up to monitors and the ventilator and the IV and the feeding tube.  It's hard to see her in her "spaceship", which is what we call her isolette.  It's so hard not to bring her home, but we will bring her home.  There are some families in the NICU who will not bring their babies home.  Avery just needs help to grow, to finish the work that should have been done in my belly, but she is not in immediate danger.  Some babies in the NICU are very sick or very very premature and their homecoming is not the sure thing that Avery's is.  This NICU thing is hard, but there are families who have it so much harder.  There are families all over the world who have a babies at 32 weeks and there is no NICU to keep them alive until they can do it themselves.  No matter how bad things are, someone out there--or just down the hall--has it worse.

3.  Good Things Come To Those Who Wait

AAAHHH!!!!  We got to hold her!!!!  Michael held her too but he didn't want his picture in the post.  We get to Kangaroo her for one hour a day right now.  There's really nothing else to say about that!  I'm off to have snuggle time with our little pixie!

I Don't Know How To Do This

Avery Hope, 5 days old

When I found out I was pregnant with Avery, I really fell apart, as you can imagine.  I cried with my friends in the Wegman's cafe for a while, but then I knew I had to go home.  I did NOT want to go home.  I did not want to tell Michael I was pregnant--he was scared enough already.  I did not want to go home and inflict on the love of my life the pain and fear I was going through.  I was so unglued myself I knew in that moment I couldn't go straight home.  So I went to my Mom.  I don't remember much about it except choking out the words "I'm pregnant" and collapsing into her lap, sobbing like a little girl.  I cried in her lap that night harder than I've cried basically ever.  Since I was a baby anyway.  Screaming, sobbing, choking, crying.  I just kept saying: "I don't know how to do this.  I don't know how to do this.", and I didn't.  Who would?  But I've learned that God knows how to do this and He has led me each day, sometimes each minute.  

We're in a new chapter where I just don't know how to do this, so I have to lean on Him.  I keep replaying in my mind the moment they put Avery on my chest and we saw her for the first time.  I try desperately to remember how she felt and what it was like to have my arms around her tiny body.  That is the only time I've held her in the 5 days since we met.  If I add up the amount of face to face time I've had with her since then, it is less than 24 hours.  I can't explain what it is to feel so keenly the absence of someone you don't really even know.  Even the kids, who have each seen her for a grand total of maybe 15 minutes talk constantly about how they love her, how they miss her, and how much they want to bring her home.  Even my stoic big boy Owen talks about Avery all the time and how much he wants to hold her and have her with us.  It's amazing how they all know our family isn't all together and that it's not quite right.

I've changed a grand total of two of her diapers.  2.  One wet, one poop.  I never knew I could be so elated to change a poopy diaper but I will remember that diaper change to the day I die.  When Avery was one day old I was sitting with her with my hand on her back because that's all I can do for her and I happened to see a nurse in the hall carrying a dirty diaper to the trash.  As she was wrapping it up I saw it had that blackish greenish tar like meconium poop on it and I just broke down.  I realized that I didn't change Avery's first diaper and it hurt so badly.  I've spent a lot of time as a Mom of little ones dreaming of what it will be like someday to NOT be constantly providing for someones constant basic needs.  Now, all I can think of is being the caregiver again.  I dream of the day that wiping her little bottom is routine.

I was discharged from the hospital July 26th.  I left her there.  My mind knows that this is right.  She can't breathe without the help of a ventilator.  She can't maintain her own body temperature.  She can't eat without a feeding tube.  My body and my heart scream at me all day that this is not right.  Something is missing.  Someone is missing.  All the way home I looked out the window and tried to tell myself: "Next year at this time we will be pushing Avery in the stroller like that." and "Next year at this time we will show Avery the river.".  Mostly though, I just cried and called out to God: "I don't know how to do this!".  Because I don't.

I don't know how to do this.  I don't know how to leave my baby in the care of others.  I don't know how to have someone else tell me how my child is doing.  I don't know how to not scoop her up and comfort her when she cries.  I don't know how to call and ask if it's a good time to see my child.  I don't know how to turn my back and go home when it's time to leave, and I have to leave.  I have to leave because her brothers and sisters need me too.  I have to leave because I have to recover from bringing her into this world so I can get back to my treatment so that she will have a Mama to come home to.  I have to leave her there but I don't know how.  I know how to stand up out of the chair and move my feet to get to the car, but when I try to imagine the next few weeks or even months, I don't understand how to live this life that we are living without her.  I don't know how to do this, but thankfully God has shown me in the last few months that I don't have to know.  I just have to lean on Him and he will shepherd us through this experience.

Is Your Back Sore? 'Cause You've Been Carrying Me All Week

Well.  THAT was not the plan.  You can’t believe the craziness of the last few days.  The crazy MESSY chaos and fear and love and kindness and blessings of July 22, 2013 to present.   It is only just settling in for me that our Avery Hope was born July 24^th at 11:19am, at 32 weeks gestation, weighing in at 4 lbs 4oz. 

She is in the NICU and they are happy with how she’s doing so I am trusting them and being happy with how she’s doing as well.  I will write her birth story soon, but right now I am a jumble of thoughts and emotions (worse than normal).  The Cliff's Notes are pretty simple.  Remember all of that mourning and releasing I was doing?  It all seems very silly in light of the last few days.  I’d like to say that I've learned my lesson about plans and analysis and predictions but I’m beginning to see that at least at this point in my spiritual maturity, that is a promise I’m not capable of keeping.  I can promise this, I will keep trying.  

Thank you for your prayers and comments and support.  You will never know how tangibly those blessings have lifted me up this week, but I can sincerely tell you that if you offered a prayer for me this week you were carrying me through as truly as if you had stormed through the doors of the hospital and physically put your arms around me and lifted with your legs, NOT YOUR BACK!  Are you nuts?  Talk soon.