Wednesday, October 16, 2013

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!!!!

Wednesday, October 2, 2013

You. GUYS!!!!!

I'm getting Chemo today.  My hair is falling out.  But I don't care because today we found out my scans were clear.  Which means...


I have one more treatment in two weeks and some scans and blah blah healthcare blah but I'm almost done.  I'm almost done.  I'M ALMOST DONE!!!!!

Dude.  I know!

Thank you for your prayers.  Thank you for your support.  Thank you for your encouragement. 

Thank you Jesus.

I have to go get the Chemo now to make sure no biological rock is left unturned but I just HAD to tell you.  Because seriously, REMISSION!!!

Wednesday, September 25, 2013

Where The Rubber Meets The Road

I wrote this to clean out the clutter in my brain and to ask for prayers.  It's hard to declutter my brain right now because Chemo is making it very cloudy and messy and it's hard work to think or put together words at all.  If you don't want to read through my mental dust pile you can skip it but I'd appreciate if you'd just say a prayer for me.  

I'm having a PET scan today.  As I write this I've already gotten through my first needle of the day because I had my mid-cycle blood work done about an hour ago.  Thankfully my blood came out willingly this time so that's positive.  I was anticipating a lot of digging around and playing musical phlebotomists so I'm really relieved to have it behind me.

I'm getting tired guys.  I'm physically tired because of the Chemo, but I am getting so mentally and emotionally exhausted.  God willing (biology cooperating?), I have only 2 treatments left.  In the beginning I had anxiety over the unknown.  I thought that with time and experience I would become desensitized and that the desensitization would mean that by the end of my cancer treatment I'd be an "old pro".  Being an "old pro" in my mind meant I would reach a point where getting poked with needles and other medical procedures that were previously challenging would become no different than shaking someones hand.

Instead, I'm experiencing some kind of increasing hypersensitivity.  It makes sense--my body is registering that it is being poisoned and is rebelling, big time.  I'm in an almost constant state of fight or flight and anything hospital related, even just figuring out who will pick up the girls from school elicits powerful nausea, physical shakes, and tears welling up in my eyes.  Sometimes I'm not doing anything cancer related but suddenly I'm tasting saline like I do when they flush my IV at chemo even though that's impossible, because I don't have an IV and I'm safe at home.  Sometimes the aching in my arms makes it so that all I can think about is being poked with needles, but they are not willful thoughts.  When these things happen I feel like such a loser.  I feel so out of control.  I feel like I should be able to make it stop or that if I was being truly positive and truly brave none of those things would happen at all.

And yet, I am being poisoned.  It is good poison.  It is saving my life.  Unfortunately, none of that changes that my body only knows it's being poisoned, and it wants out.  My body is begging me to run away and save it from the poison and it's pulling out all the stops to try to force my hand: anxiety, nausea, flashbacks, exhaustion, anger, dizziness, you name it. No matter what it tries, I have to tell it no and walk back into the fray over and over.  My body and I, we are at war with each other right now and it's hard because it's a fight I can't escape.  Not only can I not escape it, each skirmish leaves me feeling less capable of fighting the next.  I feel less capable, but I am NOT less capable.  In the fight between body and spirit, I will only allow my spirit to win, but gosh it's hard.

In the beginning my cancer was essentially an intellectual exercise.  The idea that I have about an 80% chance of surviving 5 years after my diagnosis sounded like a guarantee.  It was so easy to be positive when cancer was an idea and the discomforts were minimal and fleeting.  Now cancer is very real and relentless and believing I'll beat it takes a great deal more convincing.  80% isn't as comforting anymore.  I do still believe I will be ok, but it is hard work to believe.  I'm believing it because it's the right thing to do.  This is seriously where the rubber meets the road when it comes to meditating on my blessings and turning to my faith.  It's easy to think that those things aren't working anymore when the fight starts to really challenge me so aggressively.  It's easy to think I was being naive and that those things never actually worked at all when I'm experiencing fear or despair or pain or I can't be totally in control of my thoughts and feelings.  I wasn't being naive.  Meditating on my blessings and turning to my faith are working and they always worked because I keep doing what I have to do, no matter how I feel.

I'm having a PET scan today and a CAT scan on Friday.  The results will determine if I really do only have 2 treatments left or if I'll need more.  Please, God, please don't let me have more.  I don't know how I can possibly take any more.  I don't know how I can possibly keep forcing myself to believe if they say I still need treatment.  I don't know how, but if I have to, I will.  I will do whatever it takes to kill my cancer.  I will keep believing we're killing the cancer no matter what those PET and CAT scans say.

Can you do me a favor?  Could you pray for me?  It really helps, and I really need it.

Monday, September 16, 2013

So It Turns Out I Have Cancer

First, if you're here because Kendra from Catholic All Year sent you or because Sarah from Amongst Lovely Things said she was praying for me, welcome and thank you for stopping by!

I really really don't want to write this post.  Don't freak, it's not bad news I haven't already dropped on you.  It's just that, well, I have cancer...and it makes me feel sick.  Apparently, despite the repeated verification by doctors and general knowledge anyone with cable has about cancer, I need to be reminded that cancer makes you sick.  It is still news to me.  I need to be reminded that cancer makes you sick, I need to accept that cancer makes you sick, and I need to ADMIT that cancer makes ME sick.  I don't want to write this post because I don't want to admit that I'm not able to sail through cancer treatment while I'm just a few weeks postpartum like nothing is happening.  I don't want to admit this is hard, but the last few weeks have been so hard.

On a particularly bad night right before Avery came home I was blessed to read this post by Anne over at Modern Mrs. Darcy about the fact that life is hard and we should just admit it.  It's a real gem and it has a great sports metaphor so go read it.  She said:

"There’s no shame in the struggle: the struggle is what makes it great. The struggle is what makes it glorious." that turns out I have cancer, like, really have it.

Hi, My name is Nella and I have cancer.


I realize that of all people I should not be the last one to come to this realization, that I have cancer, that is.  After all, I've been typing it and saying it and living it officially for almost 5 months now, more if you count all of the 3 and a half months it took to diagnose me.  But honestly?  For most of it I felt kind of like a fraud.  I felt bad even saying the word cancer in reference to myself.  Chemo was hard but manageable when I was pregnant, but my oh my, it is a brand new beast postpartum.  These last two treatments since Avery was born have really kicked my butt.  Without a doubt these last few weeks have been the hardest of my life so far.  The chemo is hitting me so much harder than before.  I'm sicker, tireder, and just generally getting my butt handed to me.  That is the God's honest truth.  I guess it makes sense since it's pretty much general knowledge that having Chemo hands your butt to you and actually, having a newborn hands your butt to you, so it should follow that going through Chemo and having a newborn would throw your butt at you.  If we were talking about someone else that would be as plain as the nose on my face but since I'm talking about me I've been a real numbskull.

A big reason that things are worse now is that I have to get Neulasta, which is a synthetically modified protein that stimulates my bone marrow to make more white blood cells.  I've been to Chemo twice since Avery was born and the 2nd time around my blood work showed that my white cells were very low.  Very scary low.  Low enough that I now have to get a shot of Neulasta after every Chemo.  Which means another trip to the hospital after every Chemo and another poke with a needle and I've had a DIPE FULL of getting poked with needles.  The thing about Neulasta though, is that the inconvenience of the extra trip to the hospital and the discomfort of the extra poke from a needle is NOTHING compared to the total jerk that Neulasta is.  If I were to anthropomorphize Neulasta I would say Neulasta is that person who is so very smart and capable but is inordinately aware of how very smart and capable they are and feels the need to lord it over everyone they encounter.  Neulasta is that person at a party who could be a great conversationalist because they are very insightful and knowledgeable, but are instead miserable to talk to because they are such arrogant windbags.  Neulasta would be that person because Neulasta does a great job of recovering your white cell counts, but won't shut up about it by giving you horrible bone pain and occasional difficulty breathing.  Neulasta works.  SO WELL.  But--Neulasta hurts.  SO BAD.  Here is where I briefly address the medical community on the behalf of the rest of us:

Dear Medical Community,

I am a patient who has been diagnosed with a life threatening illness.  I am currently undergoing treatment for said illness.  I am confused about something and I hope you can help.  You have completed a great deal of very intensive, very expensive training which means I am supposed to grovel at your feet and hang on to every crumb of wisdom that tumbles from your experienced lips.  If you do not want me to google my situation why do you withhold simple information that could save me from suffering needlessly?  If you want to be entitled to rolling your eyes at the mention of WebMD, why do you only seem to acknowledge the existence of certain side effects only after they are happening?  Do you fear the power of suggestion?  That doesn't seem very scientific and from where I'm sitting it seems a bit cruel.  Please advise.  I await your wisdom.

The Patient*

*Brief aside to actual Medical Professionals who might happen upon this blog:  I realize this is snarky and unfair.  It's just that sometimes you drop the ball and it's a day at the office for you but it's a HUGE DEAL to us.  You're forgiven, but please take this under advisement.  Thank you.

Anyhoo, what prompts this correspondence?  Well, one morning after days of horrible pain throughout my entire body and breathlessness that was bad enough to make me call the doctor, I googled Neulasta along with the symptoms I was experiencing.  I found out that what I was experiencing was extremely common despite the fact that I had been told to expect "flu like" symptoms.  I also found out that for many patients, Claritin can make a huge difference.  Yes, over the counter Claritin that helps millions of allergy sufferers everyday and is readily available could take away crippling pain and my scary struggle to breathe efficiently.  I had Michael take a look at the structures and mechanism of action and blah blah sciencey blah and he felt it was plausible.  We decided I would try it next cycle because if it worked that would be awesome, and if it didn't, a few doses of Claritin in my system would be no big deal.

The night before my next Chemo treatment I took a Claritin just like the internet told me to.  The next day when I was having a check up with my oncologist and then getting checked in for Chemo I reported my bone pain every single one of the eleventy billion times people asked me for my information and about my symptoms.  You know what happened every. single. one. of those eleventy billion times?  Before I could even ask about the Claritin?  Doctor after doctor after nurse after nurse said "Oh, did you try the Claritin?".

Did I WHAT?!?!?!?  Are you freaking kidding me?  Did I try the goodness gracious Claritin?  NO!!!  Not until I had suffered for almost 2 WHOLE WEEKS because you told me to expect "flu like" symptoms and never breathed ONE FREAKING WORD about bone pain or difficulty breathing or Claritin!!!!  I had to GOOGLE IT.  Ugh.  So anyway, I tried it and it helps and thank you Jesus (and Google) because even without the bone pain and difficulty breathing I'm just barely getting by.

You know how people say that addicts have to hit rock bottom in order to admit they are powerless to control their situation?  Well, apparently biology deniers have to hit rock bottom before they will admit that cancer makes them sick and that having cancer and a newborn makes them sick and exhausted.  This week I hit rock bottom.  That's especially pathetic because I have help.  My sister was there everyday and night helping out so much, but a lot of the time I would make her sit there holding the baby watching me do stuff she was there to help me with.  How ungrateful and prideful is that?

All of my denying that I was sick and needing A LOT more rest and A LOT more help ended up with me having the WORST DAY EVER.  You guys, I got a speeding ticket and hit my sister's car with my van.   IN THE SAME DAY.  You know why?  Because I was deliriously exhausted from trying to pretend that going through Chemo and having a newborn weren't draining.  I was basically drunk without the drinking.  I had no business driving but I did anyway because I wouldn't admit that I couldn't.  The next day I ended up back at the hospital with a fever because I didn't take care of myself.  To sum it up, I let my stubbornness and pride put me and the general public in danger.  I'm so thick that that's what it takes for me to admit that cancer makes me sick.

I didn't want to write this post.  I'm glad I did though because it turns out I'm a mental neat freak.  Did you read Jennifer Fulwiler's awesome post about mental neat freaks?  How does she do it folks?  So insightful.  Anyway, that's definitely me and writing this out helps me clear out my mental clutter.  My actual house will never look like a neat freak lives here, but I definitely have OCD when it comes to my thoughts and emotions.  The general mental load of 6 kids and a husband and a dog and a household requires regular mental housekeeping.  Add in a kajillion doctor's appointments and a newborn and Chemo brain and now school and homeschool and kids activities starting back up for fall and I feel like I woke up one morning in an episode of Hoarders in my brain.  I'm also glad I wrote it because if other cancer patients, especially Moms, ever read this blog I want them to read that cancer makes you sick and it's hard so they'll know it's ok to be struggling.

You hear a lot about "battling cancer" and "fighting cancer" and I understand what people mean, but that can be a lot of pressure on a patient.  A lot of the "fighting" and "battling" looks and feels like doing nothing.  It's hard to reconcile all that brawling everyone's talking about with laying down and sleeping and watching Downton Abbey reruns and reading blogs but that's really what it is.  Sometimes the battle is really just the battle to sit down and let someone else do the dishes or pack the lunches.  Sometimes the battle is telling yourself to sit down and accept help graciously.

Finally, I'm glad I wrote this because I needed to out myself because this morning I woke up feeling well enough to write and I started back in on the denying and making plans to do things I cannot afford to do.  I have cancer.  I am sick.  Cancer makes me sick no matter how hard I try to deny it.

Hi, my name is Nella and cancer makes me sick.

Sunday, September 1, 2013

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.

Thursday, August 15, 2013

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.

Saturday, August 10, 2013

What I'm Trying To Accept About Michael's Second Wife

This is my most favorite picture from our Wedding.  My sister in law Ruth took it and I keep it in a frame by my kitchen sink so I can look at it all the time.  It's our first step into married life.  Corny, I know, but I love it.  It's sustained some water damage because it's near the sink.  I'm kinda sad it's like that but I'm proud that we've been married long enough to have a wedding photo that needs heavy duty restoration.
Today Michael and I are celebrating our 12th Wedding Anniversary.  (Are you sure Nella?  That is a really uncomfortable title choice for this occasion.)  Relax, if you're reading this it's Michael approved.  The day Michael and I got married I had all of the normal arrogance of a young bride and I was sure that NO TWO PEOPLE IN THE HISTORY OF THE WORLD HAVE EVER LOVED EACH OTHER AS MUCH AS MICHAEL AND I.  EVER.  It never occurred to me that that was not really possible.  I mean, deep down I still believe we're definitely in the top 10 of the history of the world, but I realize I may have been overshooting the mark a bit.  Many other people can be madly in love and that does not detract from how much we love each other.  Duh.  I know.  The idea that's harder to accept is that if one of us were to die, the other person could fall in love again, and that also would not detract from our love for each other.  Yuck.  I'm sorry but I'm not mature enough to like that idea yet.  I'm marginally mature enough to aspire to like it though, because Michael deserves the biggest truest love the human heart can manage.

Because of cancer I've spent some time thinking about what might happen for Michael after me.  Have you ever seen those stories on the Today Show or whatever about these married couples where they each lose their spouse to some illness and then find each other and get married and blend their families and live happily ever after?  Oh and P.S. they were able to have peace about it because one of the deceased spouses left the remaining remarried spouse a letter or video or something saying "It's OK, I love you I want you to be happy" because they are not selfish childish jerks and they are courageous, kind and loving?  I've seen them too and I want to like them but I hate them because it makes me realize I don't think I could do that.  At least not yet.  I want to be able to love Michael that much, that selflessly--but not yet, don't worry.

My "book club" can attest to the fact that this has been on my mind tormented me for a long time way before I knew I was sick and I have delighted them tortured them with hilarious monologues semi-delirious rants about just what I would do to Michael's second wife if I died.  You read that right: what I would do to her.  When I was dead.  Because I'm literally that childish and crazy.  Thank goodness I at least have the luxury of only having to navigate this second wife thing after I die.  If I had to do it when I was alive I would end up on 48 Hours or Nancy Grace.  Anyhoo, I have devoted an unhealthy amount of time to contemplating the best plan for when I meet this horrible jerk face lady.  Because I hate her hypothetical guts.  Luckily for her the whole idea is so upsetting for me I can't get a better plan together than "Play it cool when you die so God lets you into heaven and you can hang out by the pearly gates and when she finally dies and she's on her way you can lurk behind some puffy clouds or a burning bush or something and when she comes flying along with her stupid shiny new wings and her dumb holy new smiley heaven face BAM--celestial two by four upside her dumb perfectly restored head.  Then I get kicked out.  Of heaven.  Which is very bad.  So...I need some serious work and I don't mean on the plan!  I mean on me.  On my heart.

I just love Michael SO MUCH.  So much that when I really think about it I can hardly breathe.  The thought of him falling in love with someone else, even after I die, is physically painful.  I love him so much that I can't stand the thought of not being with him forever and ever amen.  He is the love of my life and the best friend I will ever have and we have been through SO MUCH and built SO MUCH and now this broad is going to come traipsing along and...and do what?  Love an amazing man?  Who deserves to be loved?  Who I promised 12 years ago to love and honor all the days of my life?  How am I loving and honoring him all the days of my life if I am begrudging him what is best for him for his WHOLE life no matter what that entails?  More than that, how am I loving and honoring him if I'm spending even one minute of the time that we are together thinking about this hypothetical woman?    

If I'm being honest, part of the reason I hate her is that if I were to kick the bucket before him and he were to remarry, that means she's walking around out there right now.  And seriously?  That's pretty threatening.  Someone could be walking around out there who Michael could love.  Ouch.  What if he met her too soon on accident?  What if we know her right now?  Well, ouch again.  But what a narcissistic fear to cling to, and how horribly disrespectful to Michael.  Aside from the fact that the only loving choice is to pray that he could find love again, I'm disregarding that Michael promised to love and honor me 'til death do us part.  So even if he did meet her before I died it wouldn't matter.  He is a good man.  He is an honorable man.  He promised to be true to me and that should be all I need to know.  It IS all I need to know.  I married a good man who promised freely to be true to me in good times and in bad, in sickness and in health.  He didn't just say those words because he was told to, he has lived them everyday for 12 years even though the bad and the sickness have been more than our young naive minds could have anticipated on our wedding day.  This is not a man who should have a wife who would begrudge him love and companionship for his whole life because she is too selfish and insecure to truly want the best for him at all times, no matter what that means.  

So.  Someday, when I'm 90 and Michael and I are on our porch somewhere and I'm practicing my shuffle off to buffalo tap step in my fringey dance costume and my best wig and I lose my balance and fall off the porch and it's literally curtains for me, I hope I'll be prepared.  I have no doubt the rest of those old bags in my dance troupe will be circling Michael as soon as the crudite is put out at my lovely bereavement brunch.  They will have seen that he's a good looking guy for 93, doesn't talk much, is quite tolerant of too much talking, and will come to tap dance performances if there will be food and he can bring his puzzles.  They will know he has loving children, grandchildren, and great grandchildren and they will know it is because he is such a good man.  Those ladies will know they'd better capitalize on the fact that Nella is out of the picture, because even at 93, Michael will still be a man many women would give anything to share a life with.
I know I can't attack Michael's future wife in Heaven because that's not how Heaven works.  Heaven is a state of being in perfect union with God who is pure love.  If I can get in there, I will be able to love purely and freely in a way my puny human mind and heart can't understand right now.  If Michael ever remarries, I'm going to trust that God will have mercy on this poor sinner and see that I love Michael as much as is humanly possible and He will  help me to look down from heaven and smile and tap dance and rejoice that he is loving and being loved.  If I love Michael as much as I promised I would, it must be my most desperate hope everyday that his life is always the very best God has in store for him, no matter what or who that might mean.  If I truly love Michael I have to let go of this impulse to make our love about me, when it should always be about wanting the greatest good for him.

We are 12 years into this crazy life together and they have been 12 years that have included the greatest pain I have ever known, but also the greatest joy.  They have been 12 years of stretching our hearts to accommodate the love that continues to grow in our marriage.  Heart stretching can really hurt, but it always pays off.  Michael and I have decided (or I have proclaimed and he concurred) that we are going to celebrate our 75th wedding anniversary together someday.  I will be 96 and he will be 99.  So I guess I'll be 96 when I tap dance off the porch.  Poor Michael will probably be thinking "How did I get mixed up with a crazy broad who was stubborn enough to think she could still shift her weight from foot to foot that fast at age 96?" and then he'll probably shake his head and fix my wig  before the paramedics get there because he is the best.  Hopefully 63 more years will be enough time to love him as much as he deserves, to bless him just barely enough for how much he has blessed me in only 12.  Hopefully I'll stretch my heart enough in those years to make it to heaven devoid of the impulse to search for a celestial two by four, because Michael deserves every ounce of love the human soul is capable of this side of heaven, and so much more.

Happy Anniversary Michael, from your future geriatric tap dancer.  I love you so much and will work hard everyday for the rest of our lives to love you more.  


Thursday, August 8, 2013

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 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!

Thursday, August 1, 2013

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!

Monday, July 29, 2013

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.

Saturday, July 27, 2013

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 24th 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.

Monday, July 22, 2013

Mourn and Release: Breastfeeding

This post is last in a series of posts where I'm facing things that I have to give up or change because of my cancer diagnosis.  The introduction to the series is here.  Here are the specific posts about homebirth and homeschooling.

Look at the picture above...what do you see?  If you became a mother after the year 2000 you probably see a symbol for FAILURE.  If you're really loopy you likely see evidence of NEGLECT and proof that the user of said item WILL NEVER BOND, WILL HAVE ASTHMA, WILL BE OBESE,  WILL HAVE TYPE 2 DIABETES, WILL NOT LEARN, WILL BE AN AX MURDERER!!!!!!!   Most men and older mothers (i.e. sane people) see a baby bottle.

Breastfeeding is a big deal.  Especially in the last 10-15 years.  Well, actually, it's been a big deal since the dawn of man, then it was down for the count, now it is BACK WITH A VENGEANCE BABY and we will be damned if we're gonna go back again.  And that's good, because breastfeeding is good.  But, BUT--some mothers and babies can't do it.  Legit CAN'T.  Not won't--CAN'T.  Now lest you get up in arms (I can hear it now "studies have shown", "you need to find the right consultant", BLAHH!!!), let me tell you a bit about how much I believe breastfeeding is good and how much I support it.  This is my breastfeeding history:

Owen-  Nursed 28 months including 4 months of pregnancy #2

Madeleine- Nursed 32 months including ALL of pregnancy #3  and then in tandem with Anna for 7 months of pregnancy #4

Anna- Nursed in tandem with Madeleine for 16 months until the 7th month of pregnancy #4 because 3 babies + 2 boobs is not a balanced equation.

Julia- Nursed 41 months (<---Full discolsure:  Even I think that's nuts.) through all of pregnancy #5 and in tandem with Adam until my diagnosis forced me to ween them both in March of this past year.

Adam- Nursed 18 months in tandem with Julia

Some of that math may be off by a month here or there but you get the gist.  So...if you have a question about nursing, I'm your go to gal.  Fo realz.  I think the kids call it "street cred".  Anyway, I put that out there in all it's gory detail to show you that I am a breastfeeding supporter, some might even look at my history and call me a fanatic.  Really, I'm just lazy.  Breastfeeding isn't easy, it actually kinda sucks (pun both intended and not intended) a lot of the time, but it fits my personality because you can't forget to bring something with you that's attached to your body.  It takes a lot of commitment and stamina but there's nothing to wash.  I never intended to be that girl described above.  If you had told me when I was 6 weeks into nursing Owen that 9 years down the line I'd have racked up that much nursing time I would have probably ended you.  But you get used to it, and if you're like me you don't exactly love it--some of the time you HATE it, but you're glad you're doing it and soon it's all you know.

Fast forward to present day.  I can't nurse this little girl.  I'm packing poison and so obviously this dairy is closed for business.  I can't really explain how I feel about this except sad and nervous.  Sad because she won't have the same thing her brothers and sisters had and it is the best option.  Sad because while I don't love nursing, I love loving my babies that way.  Nervous because after 5 babies I'm basically going back to newbie status.  I have NO CLUE about this formula/bottlefeeding thing.  NO CLUE.  I asked my pediatrician (who we love) about it and he was like "You the bottle...put in the formula...and feed it to them.".  I had no idea our beloved pediatrician was also a comedian.  I'd also like to to add that he is a HUGE breastfeeding supporter and has two amazing lactation consultants on staff.  This is not a man/doctor who doesn't take the benefits of breastfeeding very seriously.

Breastfeeding is pretty much: move shirt, feed baby.  Don't get me wrong there is a learning curve, but the choices are limited.  What I know nothing about is what bottle do I open and with what kind of nipple and then what formula do I put in it and then how much do I give the baby?  When you're nursing you just have to remember left or right.  Now with this bottle business I have to make sure I get the right kind of bottles and do you know there is not ONE kind of soy free baby formula available in the United States?  I can't use the water from the tap to mix it and do I need a bottle warmer?  Do I have to sterilize them every goodness gracious time I use them?  Holy moley.  That's a lot to figure out. That's A LOT of extra work.

We're blessed to have some very generous women pumping milk for our little girl so that she will still get at least some of the benefits of breast milk.  Gratitude doesn't even begin to cover how I feel for these women. Do you have any idea how tedious and time consuming and inconvenient pumping is?  It is the WORST.  I hate it.  I could barely force myself to bother with it for my own kids so we could leave them alone with a sitter every once in a while.  Which incidentally, is a big reason working Mamas are heroes.  Working Mamas who pump every goodness gracious day more than once a day are Grade A a** kickers.  So anyhoo, THESE LADIES are pumping for a baby that's not even theirs.  Do you realize that means they're already nursing their OWN baby, most of them also have other children, and they are taking on this massive inconvenience to help out someone else's baby?  Women are awesome.  Every precious ounce our little girl gets will be a gift of the highest magnitude and I am humbled by this generosity.  It eases my mind and heart a bit while I contemplate the fact that the next time someone posts a formula recall on Facebook, I'll have to worry about it.

Let's face it ladies, if you nurse, you know that's one area you get to look like a "Good Mom" without even trying.  If other Moms see you nursing it's like they check a box and you're cleared from a certain level of scrutiny.  I've never encountered someone who was openly judgmental towards a bottle feeding Mama, but I also know it is something that they often feel terribly sensitive about.  I know I will.  I used to think "Don't worry about it, you know what's best for your family!  Who cares what other Mamas think?".  You're an idiot Nella.  EVERY Mom cares about what EVERY OTHER Mom thinks about her.  The first time I have to take a bottle of formula out in front of other breastfeeding Moms that I don't know I will probably be more nervous than the first time I nursed in public.  I will probably want to explain myself.  I will have to get over that because it doesn't  matter.  Breastfeeding is the best choice for babies, but it doesn't automatically follow that formula is poison.  My breastmilk is poison.  Just because there are health benefits to breastmilk, doesn't mean my formula fed baby will be doomed to a lifetime of health problems and added bonus: she won't starve to death.

You know the number one reason I will never explain my bottle using ways to anyone?  BECAUSE NO OTHER BOTTLE FEEDING MOM SHOULD HAVE TO EITHER.  Period.  There is probably at least one breastfeeding Mom who started reading this post thinking "Well of course you have a good reason to use formula, but (fill in the blank).".  I know because a year ago there is a chance I would have read a post like this and thought a thought like that.  Ewww.  Shameful.  It's not enough for us to think things and not say them fellow Mothers.  We need to banish this kind of judgement from our hearts and give each other the benefit of the doubt (I'm looking in the mirror-ok really the reflective computer screen--with a very stern look on my face AT MYSELF while I type this.)  My reason for bottle feeding is no more valid than any other woman's.  I will not explain myself because NO WOMAN should have to explain the choices she makes for her family and NO OTHER WOMAN should purport to know what is best for every baby.

Beyond that, while breastfeeding is free, it is often possible because of privilege.  I could be the crazy breastfeeding lady because I could stay home.  Had I been working it would have been hard but I would have been in a white collar environment where pumping would not have been easy but it would have been possible.  I honestly probably would not have been tough enough to keep pumping and turned to formula anyway.  I had a supportive spouse.  I had many many advantages that made it possible for me to nurse.  All that nursing was really difficult, but it was a challenge I could accept because there were factors in place in my life to support me.  When I'm making a sacrifice, and it is a sacrifice to breastfeed your baby, I can start to see myself as some kind of hero or martyr, rather than who I really am--a woman of privilege who has the luxury of the best because of the sacrifices of others.  Say it with me:  "GET OVER YOURSELF NELLA!!!".

So.  Bottle feeding Mamas:  I need your help!  What bottles, nipples, formula, or any other gadget/paraphernalia do I need to know about?  What can I expect?  What takes out a breastfeeding nazi faster, a drop kick or a left hook?  Help a girl out!

Saturday, July 20, 2013

Mourn and Release: Homeschooling

This is the 3rd post in a series of posts titled "Mourn and Release".  The first post explains the point of the series, and the second specifically addressed homebirth.  Now I'm going to whine about homeschooling.  I'd suggest a smoked gouda with this whine, but since this is about homeschooling I guess I should suggest some really serious bleu cheese because then we could map its origins and culture the strain of mold and practice some french vocabulary (How many of you had a judgey moment thinking I misspelled bleu?).  

Anyhoo, we just love to do stuff at home around here.  Just like in the homebirth post, I'm not going to get into the reasons why we chose to homeschool.  There is so much about it out there in the ether that I would be beating a very dead horse.  Gross.  Besides, while homeschooling is still not the most common educational choice, it is more and more mainstream everyday so most people know a few homeschoolers and have come across an article or two on the subject.  Homeschooling is awesome, when it fits your family's needs.

I first had an inkling that I might be a future homeschool Mom back in my pre-Motherhood days when I was in Graduate School to be a teacher.  Once I became a mother and my oldest child approached school age I started to look at it seriously.  Michael and I did a lot of reading and a lot of talking and a lot more reading and a lot more talking in the process of making the decision to forgo traditional schooling.    I did a lot of reading and researching and talking and Michael did a LOT of very patient listening and asking questions and helping me sort it all out.  In all that research of philosophies and curricula and socialization (fellow homeschoolers let's all have a snort together), there was one piece of advice that has stuck with me:

The decision to homeschool in a family should be made on a child by child, year by year basis.  

I wish I could remember where I read this precious, precious gem.  The woman that wrote that deserves a medal, and dessert, and the title: "Super Smart Super Level Headed Genius of the World".  It is the ONLY piece of advice you need.  New homeschoolers can be kind of exhausting with their constant talking about curricula and unschool or classical and blah blah blah.  I know.  I was one of them.  I still love looking at books and reading about homeschool resources and Pin All The Things that I see that I could possibly ever use in our homeschool so believe me, I'm not immune.  But the first most important decision before a single book is chosen is simply "Will this best serve the needs of this individual child this year?".

Way back in the fall, I started to consider that we might not all be homeschoolers next year.  It was just a whisper in the back of my mind but the data was beginning to pile up that the needs of each individual child measured against what I could realistically provide during this season of our life was not a balanced equation.  OUCH.  You see, about 2 years ago, it started to become clear that Owen was having difficulty learning to read and write.  Up until then he was behind his peers but well within normal limits, especially considering he was boy.  Soon though, we had to face that Owen needed more intensive intervention.  He completed Speech Therapy and Vision Therapy.  I cannot say enough about how life changing Vision Therapy was for Owen and I highly recommend that if you have a struggling reader you take them straight to a Developmental Optometrist.  Despite this therapy and continued reading instruction, he fell further and further behind.  I have done every single instructional method and remediation I know, and as someone who holds an undergraduate degree in Linguistics with a focus on Child Language Acquisition and a Master's degree in Elementary Education, I was as "well prepared" as a Mom could possibly be to teach a struggling reader .  But it didn't matter.  My 9 year old, who in a traditional school setting would be entering a 4th grade classroom in the fall, reads at a first or second grade level.  There are no words to describe how difficult that is to write.

It has been a long, hard, terrifying road.  Until my cancer diagnosis it was my all consuming project to find new curricula, new therapies, and new experts to evaluate him.  It was what kept me up at night.  It is terrifying to have a child that can't read.  In the 21st century a kid would be better off missing a limb than being illiterate.  Even more scary is the knowledge that I alone am to blame, there is no one else to share the responsibility for his illiteracy.  A parent whose child is in school can share the blame for their child's struggles with the teachers and other professionals in the school.  When you homeschool, the cheese stands alone.  Even though we have gotten him outside help, it is still on me.  The self doubt and fear you feel as a parent that you could be failing your child in such a profound way can be paralyzing, but we couldn't afford paralysis, we had to keep pushing ahead to find an answer.

After completing Vision Therapy, Owen was also evaluated for Central Auditory Processing Disorder, and went on to have a complete Neuro-psychological evaluation.  Through these hours and hours of evaluations and therapies and research we have determined that Owen is Dyslexic.  It is such a relief.  Now we know why normal remediation couldn't help him.  Now we know where to start finding resources that can actually help.  Owen needs a lot of very intensive one on one attention that cannot be provided in a traditional school environment.  It also cannot be provided with needy younger sisters running around.  Owen will work with an Orton-Gillingham specialist this year in conjunction with instruction provided at home by yours truly.  THIS we can work with!  THIS will be a lot of work for us, but it is work that will bear fruit.  Best of all, Owen's dyslexia would be a terrible impediment to him in a traditional school, but there is no reason for it to be an impediment to him in life.  Dyslexia isn't even really a disability at all.  In fact, many of the best things about Owen, his most impressive talents and skills are as much a part of his Dyslexia as the challenges it poses for his interactions with written language.  We were blessed to have him home to be able to identify it as soon as we did, and we are blessed to have him at home to provide him with the quality and method of instruction he needs.

You're probably starting to wonder...who's going to school?  The big girls (Madeleine and Anna) will go to our wonderful parish school where their very standard, very easy to meet needs will be met so that I can tend to Owen's much more pressing needs without distraction.  The girls are constantly asking me for more school work, and between the intensive attention that Owen needs and the fact that there are still 2 OTHER KIDS in the house, the attention to academics they were begging for just wasn't happening.  They are neuro-typical super enthusiastic learners who like to be around other kids.  It's a no brainer that sending them to school for a year makes sure everyone gets what they need.

So what's the big deal?  Ego alert.  Again.  I have to admit I can't be the "be all end all" for my kids.  I believe that all things being equal homeschooling is the most ideal educational choice, and even with that belief, I have to accept that it's not for all of my kids at this time.  I have to admit I'm not enough, mostly to myself.  I have to admit that I need help.  I have to not just admit it, but be grateful that I even have access to that help and to many different choices to boot.  It is a privilege to have the ability to forgo a second salary so I can be home for the kids who need me at home.  It is a privilege to have the ability to send the kids who don't need to be home to a high quality private school.  It is even a privilege to have a child with special educational needs and be able to identify it, let alone provide the services needed to help him succeed.  Yet here I am, again, feeling sorry for myself because I "have to" send 2 of my 6 children to an excellent school for one year.  Shame, shame, double shame, everybody knows your name.

Maybe after our traditional schooling adventure I'll get to bring everyone home again, maybe not.  Maybe we'll have a mix of schoolers in our house again, maybe not.  Maybe someday they'll all go somewhere else without me OMG GET ME A PAPER BAG!!!!!  Just kidding, mostly.  Maybe they will, and if they do it will be because their needs trump any educational philosophy I can espouse.  Because it's about them and recognizing that homeschooling is good, so so good, but not if it's not right for them.  So when the coo coo homeschooler voice in my head starts yelling at me "You're warehousing your kids!" or "Their teachers won't even know who Susan Wise Bauer is!", I need to tell her to zip it, because that b**** be tres cray (that's ghetto French for "that young lady is very crazy".).  Now if you'll excuse me, I have to go hide my denim jumper so the homeschool police can't confiscate it.

Wednesday, July 3, 2013

Mourn and Release: Homebirth

I wrote a precursor to this post here.  If you didn't read that yet all of this melodrama will not make much sense.

*I'm pretty sure my repeated use of disclaimers means I'm not communicating my thoughts clearly enough, but I never professed to be a "real" writer.  Birth is a sensitive subject for many women and I want to make it clear that while I have strong feelings about Maternity Care in America the point of this post is that I'm nuts and it doesn't matter as much as my deluded head thinks it does.  This is meant to be a judgment on MY attitudes toward birthing practices and not on anyone else's birth choices.  This is about ME BEING A SELF RIGHTEOUS NUT JOB.

True dat, Ryan.  TRUE DAT.  (HT:

We had 4 of our babies in hospitals, one with an OB, the others with Midwives.  Our last birth was a homebirth with a wonderful midwife.  You could say I'm a bit of a connoisseur of maternity care. I would give anything for this birth to be a homebirth as well.  I know, there are a BUNCH of you right now who are like: "Girrrrl! You're upset about not having a baby in your house with no drugs?!?!?!?  Bullet dodged.  Move on.".  There are others probably thinking: "Should she be allowed to have a baby if she thinks it's a good idea to have her baby anywhere but a hospital?".  I'm not going to get into the particulars of why or how home birth is a great choice.  Remember my husband the scientist?  There is no way he'd allow his wife or child to be put in danger for some crazy hippy stuff.  Home birth is a safe, ideal choice for low risk mothers.  It was an ideal choice for us.  WAS.

I'm not a low risk mother anymore.  I don't really feel comfortable with the idea that I'm a high risk mother, unless it connotes something like: "You are at high risk if you mess with that mother."--but this time around, I have to accept that title.  So far, our sweet girl is doing beautifully.  She is by far our most photographed child in utero and she is looking just gorgeous both physiologically and aesthetically if I may take some maternal license thank you very much.  Her heart and lungs and important parts are all just right, her growth is right on, and she is progressing as if nothing was going on out of the ordinary.  I'm doing great, all things considered.  My blood counts do take a hit after treatment but I'm not bottoming out by any metric so far.  My blood is one reason for my high risk status.  My germ fighters and clotters and oxygenators aren't where they should be.  I have to be in a place where there is extra blood and medicine laying around just in case.

The other complication in my situation is that I have to be induced. I have to be induced because I have to time my labor and delivery with my treatment.  I get chemo every 2 weeks and the negative impact of the chemo on my blood counts is least right at the end of the 2 weeks, just before I go back for another dose.  I need my clotters and germ fighters and oxygenators to be able to give birth, so we need to make sure I give birth 2 weeks after my chemo.  I need to give birth as soon as possible (at 36 weeks) because until I do, we can't actually know exactly how much cancer I have, but I can't give birth too early because that would be bad for the baby.  THEN, I need to recover from the birth as quickly as possible so that, God willing, I can start my treatment again 15 days after my daughter is born.  If I have to wait too long between the birth and the treatment, important progress that has been made in killing my cancer could be lost.  Whew.  So OF COURSE thank God they can induce me.  Thank God we can time things in a way that is best for me and for our daughter.

So why is this induction so hard to accept?  Because it goes against my ideals.  Can you believe I used to think I wasn't one of those militant homebirthers? EARTH TO NELLA:  Cancer is not ideal.  Chemo during pregnancy is not ideal.  But a safe, healthy, Mama and baby are the only real ideal.  That might seem like a "DUH!" thing to say, but in standard maternity care it is often used to treat mothers very poorly so it's like a trigger to me.  The idea of safety is often twisted to trump very real concerns on the part of the mother and baby and very often equate more to the convenience of the medical staff than the well being of the patients, both big and small.  Standard maternity care can be terribly dismissive of the power of a woman's body, and in many ways is systemically misogynistic and it makes me SO MAD.  But I can't focus on that now.  I can't focus on standing up to the standard of care and how it is less than ideal for low risk mothers and babies.

In the end, I have to accept that I am in a less than ideal situation, and I am blessed to have access to interventions that I will truly need.  I have spent a lot of years standing up for myself and my babies to the standard of care.  It's weird and humbling to switch gears and accept that this time standing up for us means embracing so much of what I've previously rejected.  I have to come to a place of gratitude that these technologies exist and that I have access to them.  It's hard because I feel like utilizing those resources is reinforcing and legitimizing a system I believe is deeply flawed--and it is. But so am I.  

Every time I go to an appointment at the hospital, with an OB/GYN instead of a midwife I want to tell everyone I see that I really need this this time, but many women don't even though you make them think they do, and don't think for one second I'm not on to you.  What can I say?  I'm a delight.  GET OVER YOURSELF NELLA!!!! I feel like a musician who is being led in another direction in her work and is afraid of being accused of “selling out”.  I never really understood this idea of not wanting to “sell out”.  I thought: “Hey crazy pants!  Lighten up!  Things change!  You can’t be so stuck in your habits or choices that you can’t make the choices that will move you forward!”.  Easier said than done, uppity judgey Nella.  Here I am, in a position where the right path is very clear, but my pride is telling me that I’m selling out.  I believe so strongly that low risk American mothers deserve better maternity care, but if I’m being honest, I made it into an idol and I made myself the high priestess.  Ultimately, the fate of the maternity care system in this country is a lot bigger than lil ole me.  DOUBLE DUH.  It has many problems, but we natural birth types could stand to remind ourselves that it does a whole lot right that we can forget to see when we are safely ensconced in our little low risk bubbles.  I'm ashamed that I struggle so much to put aside my activism and my pride.  I'm ashamed that I struggle so much to have some genuine gratitude for the people and technologies that will benefit my baby and I in our time of need.  I need to get over myself.

It's not just a sense of activism and "selling out to the man" that makes this so hard.  I just plain don’t want to go to the hospital because I don’t like giving birth there.   I'm just plain old sad and disappointed.  I'm sad because our homebirth was so peaceful, and respectful, and beautiful, and I can't have it like that again.  It is heartbreaking to give that up.  Being in the hospital takes away so much of the intimacy of birth.  It just does.  After having our son at home in our room, just Michael and I and a midwife who had the wisdom and humility to let nature take its course and to let Michael and I bring our child into the world--well, being in a hospital while we birth our baby will feel as profound a violation as if there was a medical team standing around while we made the baby.  I know that sounds melodramatic and weird but it's the truth.

At our homebirth nobody was bothering me or manhandling me.  It was just Michael and I.  It was quiet (until I wasn't Michael would want me to tell you lol).  It was private, which is much appreciated when you're half nudey patoots.  Nobody "checked" me (you feel me ladies?).  Not once.  Nobody was shouting counts of 10 in my face like some kind of horrible preschool boot camp.  Nobody but Michael or I said a single word until Adam was born.  It was amazing.  It was just Michael and I and the midwife WAY in the background.  Just me doing what I was designed to do, and Michael supporting me every step of the way.  It was just Michael and I working together to bring the child we helped create into this world.  It was such a blessing.

When you're in the hospital it becomes about everyone BUT you and the baby.  It just does.  They mean well, they mean for it to be about the Mama and baby, but it’s just not.  You're on everyone ELSE'S timetable.  You're inconveniencing everyone ELSE--you know, everyone who is not in the middle of what has been universally regarded through the ages as one of the single most mentally, emotionally, and physically intense human experiences?  So, yeah, I'd rather be at home.  I'd rather skip the physical comfort of the drugs to be at home.  I know that makes me seem crazy, but I've never hidden the fact that I'm nuts.  I’m sad I can’t have my baby in my home with my husband in all my crazy nuttiness.  But look at that sentence.  I, I, my, my, my, my what a lack of perspective we can cultivate when we make false idols.  Selflessness fail.

People are going to bug me and manhandle me while I'm in labor with this little girl.  People will be intruding on personal, intimate moments that I'd rather share only with my husband.  But those people will be there to protect me and our daughter from real dangers that could actually come.  I have to accept that.  I have to find a way when that moment comes to say thank you and mean it.  Not in my normal "you could poke me with something or cut me so I'll kiss your butt" kind of way that I generally thank medical professionals of a maternity care nature, but a real thank you.  Because I will mean it, and they will deserve it.  I have to let go of my pride, because in the end, they are helping me and they are helping my daughter and I am so blessed that they will be there.

That was too much and not enough all at once.  Huh.  I thought this would be the easiest one to write.  Oh well.  GET OVER YOURSELF NELLA!!!!  That's the point of this whole thing.  To lighten things up, here is a clip of one of my favorite comedians, Jim Gaffigan, about homebirth.  The home birth portion starts at 1:29 and ends around 4:11, or you could just watch the whole thing because he is really funny.

Oh, and you should know, when he says that "birth coach" is too generous a's not too generous a title for Michael.  He is the BEST doula a girl could ask for.