+100

Today is a HUGE milestone for transplant survivors.  In a way, today my transplant survivor status is official.  It's Day +100!!!!!

I can drive.  I can prepare food.  I can change diapers.  I can be in my home without adult supervision of any kind.

My post transplant scans all came back clear which was pretty anti-climactic.  We knew they would be.  I just can't get myself to feel much of anything about it because right now I can't get past the fact that my remission can be taken from me at any time.  I'm trying to focus on the positive and there is SO much of that in my life.

I'm learning that when it is most important for you to be optimistic, it's also the hardest to be optimistic.  So, in honor of reaching the +100 milestone with Bone Marrow that functions pretty darn well and without being re-hospitalized one single time, I present you with a list of positive thoughts:

• There is no reasonable explanation for why I made it 100 days without having a single fever.  I had to go to the hospital 4 times during my first line treatment to have blood cultures done because I had a fever.  I went into labor with Avery because of a fever.  Somehow, this time when my immune system was WAY WAY WAY more compromised to the extent that I as not allowed to handle dirty laundry...not one single extra trip to the hospital.  In a house with 6 small children where the baby plays in the toilet, the garbage, and plays "Ice Bucket Challenge" with the dog's water bowl.  In a house with a potty training 3 year old boy.  That's crazy, and that's pretty awesome.

• My husband is such a hard worker and such a super smart man that he was able to provide not only the medical care that I required but also Nannies 4 days a week so that I would be able to follow all my post transplant restrictions in a house with 6 kids who are home all day.  

• I live in a town and a time where I have access to world class healthcare a short 20 minute drive from my home.

• We are surrounded by friends and family who have supported us from the very beginning of this ordeal.

• I get to go back to Pilates tonight and get back to swimming my laps this week.

• My hair is really coming in and my eyebrows have come in so well that I have to pluck the ones that step out of line.  100 days ago I was completely cueball bald and had about 9 eyebrow hairs total and no eyelashes at all.

• Regardless of the what the future may hold, I have this time with my family, right now.

There's a thing among transplant survivors where you post a picture of yourself on Day +100 so here it is, from my grainy cellphone camera, taken by my son Owen:

Hair: check.  Eyebrows: check  Eyelashes: check  Functioning Bone Marrow: check

Thank you everyone for your prayers, love, and support as I continue to walk this crazy cancer road!  Day +100 is not what I thought it might be, but it's still pretty darn good.

14 Days, 26.2 Miles, and 35 years

So...this is awkward.

I've been hiding from you which is not very nice considering how kind you all are to me.  The short version of why is that:

a.  cognitive function not in the crapper anymore but mostly at capacity with daily life
b.  living with my husband and kids again
c.  the longer I wait to write the weirder it feels to start up again

I was also approached to do an awareness post in September and I had a big mental panic attack because I'm SUPER conflicted about disease related awareness and so I just went into a mental bunker to hide from the whole thing.  Then I felt guilty that I didn't do it.  Then I felt guilty I didn't do awareness posts for ALL THE CANCER!!!  Now I decided to put on my big girl pants and give my adoring public what they want...half baked ramblings and haphazard punctuation.

14 days until Day +100

Today is exactly 14 days until I'm 100 days past transplant.  Starting day +100 I'll be allowed to do all kinds of things like drive, change diapers, handle raw food, and handle dirty laundry again.  I've already signed up for my first volunteer shifts at the kids' schoolish.  I cannot wait.  My recovery has been slow but steady.  My germ fighters (ANC) were fluctuating quite a bit for a while and I was having to get weekly growth factor shots.  I finally stopped the shots 2 weeks ago and had a pretty good count so hopefully that will continue.  My platelets and hemoglobin are good which is really nice, they're usually the last to come up.  Waiting for your blood to accomplish things is weird.  You feel like there is something you should do but other than eat and be active you're pretty powerless (really cruncheroos, sorry).  When it comes to germ fighters you're totally in the dark about whether you're improving or not, I've never been symptomatic (bleeding nose or gums) when my platelets were low, but oh my goodness, I could predict pretty accurately where I was on the scale for hemoglobin just based on how I felt.  My hemoglobin is on the low end of normal right now so I'm feeling great.  

I'm starting the re-staging process this week.  CT Scans on Friday and then next week PET scan, cardio/pulmonary test and DEXA scan to see how my bones weathered this storm.  My guess is my bones are fine because they have me on enough Calcium to cure a horse with osteoporosis.  

26.2 Miles for The Leukemia and Lymphoma Society

Yesterday, my best friend from middle school and dear friend for life, Dr. Joelle Taylor, finished the New York City Marathon in 4 hours, 19 minutes, and 49 seconds.  In the process of preparing for this incredible accomplishment she raised $4,655 for The Leukemia and Lymphoma Society.  She ran in my honor and I am deeply humbled and grateful.  Joelle, I am so proud of you and I am so grateful for your love and friendship!

35 years

On October 25th, I turned 35. 

 Remember in elementary school when you learned to round to the nearest 10?  5 or more in the ones place and you round up?  Well, Michael is 3 years older than me and so I've mercilessly teased him since he was 25 about "rounding up".  It went something like this..."You're so OLD, you're not 25 you're really 30!  You have a wife and a house and your age ends in 5 so round up!"  Super funny Nella.  That used to seem like a funny joke when we were dumb kids.  So anyway, we've been teasing each other in this manner for a long time.  

This year Michael gave me the old speech about rounding up (haha!  You're really 40!) and I realized that while it's not a guarantee, statistically there's a decent chance that rounding up is the closest I'll ever get to 40.  My chances for surviving the transplant were good, but the truth is that my chances of surviving this cancer for 5 years are not the kind of odds that make you feel awesome about the future. 

It's weird how our mind boxes things up without us really knowing.  After I found out that I had relapsed and went through the initial whirlwind, my mind became very focused on the task at hand and not on my prognosis.  As each step of treatment intensified I became more and more consumed with the tangible steps in front of me.  In the last few weeks as I've felt more and more healthy and my recovery from treatment has become less and less of a full time job, my mind has opened a door that looks like this:

Fancy bloggers with discipline would have photoshopped this to read:  "Don't Open, Cancer Inside"

One day a few weeks ago all of these really scary statistics that my mind had cordoned off behind yellow tape and razor wire were released back into my thought stream.  Now that I've survived the transplant process I'm back to thinking about cancer.  That may seem weird because how could you be at a cancer hospital and not think about cancer, but to get through something like the transplant process I really needed to focus only on that and not on the actual cancer stuff.  

I can't hide from the truth anymore, which is that the chance that I'll still be around and Lymphoma free in 5 years is 50%.  50% is actually being a little generous based on how quickly I relapsed last time and some other factors.  That's a lot of reality to deal with.  Truth is, sometimes I'm ok with that and sometimes I'm just not.  

Please do not mistake this for not having a positive attitude.  I've realized  through this that many people think that a positive attitude is some kind of magic spell that makes everything just work out.  I'm here to tell you that that is not why a positive attitude helps you when you're sick.  A positive attitude doesn't have much control over whether or not cancer grows in your body.  What a positive attitude does is makes you swallow your pills when you don't feel like it and you're tempted to think "What difference does it make?".  It makes you get out of bed and get dressed and go to the hospital when you feel like you just can't face that place again.  A positive attitude makes you keep moving when it's just so hard.  A positive attitude doesn't involve avoiding reality.

Michael and I have adopted a policy of "expect the best and plan for the worst".  We've started researching the most commonly used treatments for 3rd time relapsers and evaluating clinical trials.  I already have a list of questions for when I return to my Lymphoma Oncologist at day +100.  I may still have some treatment to go, even if my scans are clear, which they should be.  

I can't be positive that I'll make it to 40 because I know about math, but I can be positive I'll fight like crazy to get there.  

Getting old is the best thing that could ever happen to me.

Day +13: Sometimes You Just Cry

*The management makes no promises for coherence, grammar, or punctuation.


I'm kind of a crier.  I cry a lot.  Happy, sad, mad, relieved, undecided....cry, cry, cry, cry, cry.  I cry enough over random stuff that now if my 10 year old son finds me crying about something and I start to tell him not to worry he kind of rolls his eyes and says "I know, Mom, sometime ladies just cry."

In the car, when there is ANY country music playing except Luke Bryan, if I see a really great bird, almost EVERY time I see my husband,  if I think one year--sometimes one month ahead in my children's lives.....etc.

I try really hard at the hospital to not cry at all.  I try very hard to be super special patient that causes zero trouble.  I say thank you for every pill, every IV pump reset and I say sorry for every single gross thing such as puking.  I apologize between pukes as though they'd assume it's my hobby and I just decided to fit in some recreational puking right now and I regret I've inconvenienced them with my poor timing. I need them to know I did not want to cause puke for them to handle.  I wish I had a stack of $5 bills on my tray to hand out every time I have to push the call button.  I HATE pushing the call button. I basically only push the call button when my IV is beeping because I know if I let it go they'll say "why'd you do that".  Anyway, I try to be sunshiney patient in their day and yesterday I was an epic fail.

Yesterday was day +12, or 12 days since my transplant.  I cried all day yesterday.  All. day. long.  Did I get some bad news?  Nope. Great news.  Yesterday was the day my Absolute Neutrophil Count was almost where it needed to be for us to tentatively maybe discuss, barring any unforeseen bumps in the road, the possibility of me being discharged at some point.  Possibly.  (It's hard for doctors to commit to anything). Today the news was even better.  My Absolute Neutrophil count needed to be greater than 1.5 and it's 1.76.  They're giving me one more growth factor shot to keep things jumping up and hopefully  after today I'll get a break from them.  They make me very achy.  I might even get unhooked from my IV's tomorrow.  It's awesome.  I might even go home sometime next week.

But I spent all day yesterday just crying and crying.  I just want to go home.  I just want to walk around with out dragging an IV pole everywhere I go.  I want to see my kids.  They've visited once and I was so happy to see them and they were happy to see me, but they each only got to visit with me for 3-5 minutes because there can only be 2 visitors in the room at a time and the people who weren't with Mommy had to be entertained in the waiting room.  I can't help but wonder how that feels to a kid, to not see their Mommy for nearly 2 weeks, then see her for literally less than 5 minutes, and then leave.  I can't think about it much because I know what it did to me.  It hurt like hell to watch them leave.  It hurt like hell to see their eyes darting around the room and taking inventory of "Everything they're doing to Mommy".  It hurt like hell to not just scoop them up and hug them properly because we have to be careful of my lines.  So anyway, yesterday I was a total sad sack loser.  I barely walked any laps, I just sat around crying.  If it weren't for my Dad coming to visit I wouldn't have done any.

Even now, when things continue to look up in very concrete ways and I'll be home sooner rather than later, I'm on the edge of tears.  I try really hard with the Medical Types to be super cheerful and courteous at all times.  Their job is really hard and the last thing they need to deal with is Mrs. Weepy McWeeperson.  Plus I'm paranoid that if they see my runny nose from crying they'll assume it is microbe related and ruin everything by making me stay longer.  No way.

I'm pretty mad at myself for crying.  Things could be so much worse.  I carry a lot of shame about the privileged life I lead, but today, I'm just going to say this is hard.  It really stinks.  I don't feel like doing this anymore.

Anyhoo, despite the whining and crying, 13 days out from the transplant, there is progress being made on multiple fronts and I am grateful for it, truly.  I still wish it never happened and sometimes when you carry something this big, you're just gonna cry.

Day +13 ended up much better than I expected when I started writing this.  There are lots of good things happening today and there is a light at the end of the tunnel.

In case you'd like to know just how easy it is to make me cry with even the weirdest things...

Go to this link and understand that EVERY TIME I watch it I start tearing up by :44 and full on cry the rest of the time

I realize cool kids embed videos.  I just didn't have it in me.  But seriously you guys?  That video makes me ugly cry EVERY time.  That video is 3 years old.  Perdiodically for 3 years I have revisited this video to see if I am free from it's clutches and can be considered  marginally sane again and I CANNOT.  I cry everytime.

So there ya have it, sometimes I cry about cancer.  Sometimes I cry about Lester Holt holding up a cardboard TV cut out and some intern getting to bust out her backyard backhandspring on asphalt for the Today Show.  That's a lotta range.

In Honor Of My Grandma

Doris Rexford 

On June 1st, this world lost a Great Lady.  Capital G.  Capital L.  My maternal grandmother, Doris Rexford, was just simply a Great Lady.  I cannot possibly do her any justice here, but I want to honor her in some way, so I'm going to tell you a bit about her.  She was a woman whose life, if I were to list all the events, the chronology, the hardships and the accomplishments, sounds like a movie.  I can't do that here, but I need to share a little with you, because she was a Great Lady.

She was born in Exeter, Devonshire, England in 1928.  Her town was targeted by 18 Nazi air raids during WWII and she told us many times about the metal cage they had in their home so that when there was an air raid they could climb inside and be protected in case their home was hit and collapsed on them.  My grandma was known to say "England is my homeland, but America is my country".  She came to the United States at age 17(!) as a war bride, knowing no one but her new husband.  She went from a modern, suburban life in England as essentially a schoolgirl in her parents' home to life as a wife and very soon a young mother in a very rural home with no indoor plumbing.  When she would wash her first daughter's diapers in the winter she would have to hang them on a line indoors and they would freeze.  Solid.  She kept her home immaculate.  IMMACULATE as in it looks like it was hermetically sealed in 1955 when it was built and nobody ever crossed the threshold again.  But people did cross the threshold.  She raised 5 children in that home and welcomed 15 grandchildren and 20(and counting) great grandchildren.  She just never stopped.  She never stopped cooking and cleaning and gardening and learning.  She was a force.

She followed the news very closely and always knew the ins and out of everything that was going on here in the US as well as at home in England.  She kept a close eye on the Weather Channel and was quick with a phone call whenever something serious was going to hit an area of the country where one of her grandchildren had settled.  She watched the financial news and was extremely well informed about what it all meant for her savings, which she recorded meticulously.

One of my favorite stories about my Grandma was a time that I drove her to the bank.  I can't remember now exactly when it was but I think it was about 9 years ago.  Anyway, I drove her to the bank because her CD's were coming due and she had to do some stuff with interest rates and who knows what.  I'll tell you who knew what--she knew what.  Oh my goodness.  She came in there, quite elderly at that point, unable to see particularly well, with all of her calculations written on the back of an envelope.  She had calculated what the new rate on her CD should be based on the financial news and "what Mr. Greenspan said".

Have you ever seen those posters at the bank where they try to sell you CD's and they write interest rates on it with a sharpie to make you think they're on top of things?  It turns out they're not that on top of things, but Grandma sure was.  We were ushered into the cubicle of a poor young man who had no clue who he was dealing with.  My grandmother began to discuss the business she had to complete and he began telling her that the rate on the poster was the rate that they would be using for this upcoming term on her CD's, and that Grandma could expect a return of x amount.  Well, that did not match what was on the envelope or what Mr. Greenspan had to say...so...there was work to be done.

I was getting a bit nervous at this point because honestly I didn't understand a word of what they were discussing and my Grandma's calculations on the envelope were out to the 3rd decimal place and I hate math and I'm the kind of rube who would believe that the numbers on a poster at the bank are accurate.  I had no clue who was right.  I had no clue how this would play out, and I had never really observed my Grandma like this, out in the world.  Grandma walked him through her numbers, which he conceded were correct, but could not be used until somesuch day.  So, Grandma very politely and patiently walked him through it again because she literally knew his business better than he did.  At this point the poor guy didn't know whether he was coming or going.  Grandma sensed this and reached across the desk and put her hand on his arm and said:  "Am I troubling you Derrick?" and I had to stifle a fit of giggles because it all seemed so hilarious.  At some point a manager showed up and after some more back and forth guess what? Grandma and her envelope won.  After a short and very polite speech about what people's unbridled borrowing is doing to the savers in this country Grandma was on her way with her CD's all squared away.

I will never forget that day for so many reasons.  I knew my Grandma was really smart, everyone in her family was and you knew just from talking to her that she was sharp, but to see that kind of knowledge collected and calculated all on her own on the back of an envelope and used to school a bank--it was breathtaking.  Even more breathtaking was the incredible, unshakable grace and politeness with which the entire matter was handled.  Many people in her situation would have given up, and many more would have lost their cool and been loud or obnoxious to try to get their point across.  She was just simply unflappable and polite.  I still chuckle to myself everytime I think of the phrase "Am I troubling you Derrick?".  Poor guy had no idea what he was in for.

I want to tell you so much about her, about how she walked everywhere, even to get her groceries into her seventies and golfed for years.  She'd get up at 5am to play and then walk home and get right to work making sure everything in her home was just so.  When my Mom had her 4th and 5th babies and was working full time she would come over and clean the house and make dinner during the day and when we'd walk in the door we knew immediately that she'd been there because everything was perfect.  If she was still there when we got home we would all fight over who went in the door first because she was starting to lose her hearing and we would always inadvertently scare her which we hated to do.  We started coming in the door and SLAMMING it shut and then SLAMMING our backpacks onto the floor while kicking off our shoes and TALKING VERY LOUDLY because she was not only hard of hearing but was often vacuuming something to kingdom come that you didn't even know could or should be vacuumed.  We still ended up scaring her most of the time, but she was always happy to see us.

That's the thing I really want you to know about her.  She had 5 children, 15 grandchildren, and 20 great grandchildren but she had a way of saying your name and talking to you and about you that made you feel like you were the only one.  She was just so proud of every little thing each of us did and always made sure we knew what all the cousins were up to.  Somehow she always made you feel so incredibly important and special.  A lot of it was all the normal stuff of growing up, but as long as you were trying, that was worth reporting.  She just loved us, and we all felt it.  People always worry about there being enough love in a big family, but my Grandma is proof that there is always enough love.

When my own family started growing beyond what society considers decent, my grandma once grabbed my hand in between both of hers told me "Don't let anyone make you feel badly about these children.  I know it's hard now.  It's so hard, but someday they won't need you anymore and you will be surrounded by such love, Nella.  You will be surrounded by so much love."

She was surrounded by so much love.  My Mom and her siblings cared for my Grandma so beautifully and so generously that she was able to live independently in her own home until the very end.  Doris Rexford was a force to the very last moment, weeding her garden and getting it just so.

Thank you Grandma R, for surrounding US with so much love.  If I am a quarter the woman you were, I'll have lived a life I can be proud of.

A Letter To Me, One Year Ago Today

Dear Nella:

It's me, I mean, it's you from a year in the future.  I know you're starting Chemo today, and I know you're really scared.  I wanted to tell you it will be ok.

First of all, the baby is doing really well.  As I/you type this, she's army crawling around trying to stuff her beautiful fat cheeks with choking hazards.  Chemo is least of her safety concerns.

Second of all, yes, your skin is going to stop hurting.  You're going to wear clothes without weeping inside and you won't be covered in sores and scabs and scars anymore.  You're going to just throw on any old clothes, even jeans, and you won't have to figure out what will hurt the least and still cover up as much gross embarrassing skin as possible.  You won't even notice or think about your skin except to notice that "Hey, I'm wearing clothes like a person and I totally forgot!".  You have scars, but you don't really care, because you just don't.

I know you probably want some advice.  I know you're scared about what you'll see today.  We hate medical stuff and you're afraid that everyone will notice that you're trying to look at the ceiling without looking at all of the needles in everyone's arms everywhere.  You'll get over it.  You will never, however, be able to not look at the ceiling in the Phlebotomy area.  But not to worry, that doesn't mean you're a wimp.

You're scared about how it will feel and if you'll be tough enough to handle it and still make everyone think you're good at having cancer.  Please stop thinking that.  There is no such thing as being good at having cancer and there is no such thing as being bad at having cancer.  You're just a pregnant lady with cancer.  It's wildly inappropriate for you to put that kind of pressure on yourself.

Which brings me to my next point.  If something hurts or is uncomfortable TELL SOMEONE RIGHT AWAY.  Don't second guess yourself and don't tell yourself you're being oversensitive and that other people go through worse things in their lives.  Yes, they do, but you've given birth 4 times without drugs and you have a decent idea about whether or not you are in discomfort.  Please save us from a lot of needless suffering.  Please tell them when you're hurting instead of apologizing and explaining it away.  Chemo isn't supposed to hurt.  Well, the needle part hurts, but after that when they push the saline and start the bags it shouldn't hurt at all.  When they push drugs into your IV with a syringe it should NOT hurt.  You have ornery veins and when your chemo hurts it's because your line isn't in right, it's not because you're a whiny over-sensitive worthless baby.   Those nurses have their jobs because of sick people like you.  You are not inconveniencing them.  Tell them it hurts.

Chemo tastes bad.  Really bad.  Actually the saline they flush your lines with tastes bad and one of your drugs (the one that's usually the last push) tastes like...methane.  I guess that's the most delicate way to put it.  It tastes kind of like toots.  You will really need Jolly Ranchers for the saline and the toot one.  When this is all over the smell of Jolly Ranchers will make you physically wretch which may not seem like a big deal because we always thought those were overrated anyway but kids eat them so you will have to smell it sometimes.

I almost forgot--be serious about germs please.  Please be serious about germs and don't care what anyone thinks.  The baby is ok but you had her early because you were not serious about germs.  Let people laugh at you and judge you and then go ahead and be serious about germs.

Yes you will make it to Owen's first baseball game of the season tonight and no you won't throw up in a garbage can.  You'll just feel gross and weird but it'll pass and it will be bizarre to think of what just happened and to realize nobody there has any clue.

Oh and you know that thing you want God to use your cancer to fix?  It's not happening today or this week but don't give up.  You might just have cancer because you have cancer and that's ok too.  You're going to learn a lot.

That's all for now.  I know you know it will be ok.  You know it will be ok because of statistics and science.  You know it will be ok if you don't land in the good part of the statistics because it will just still be ok because God.  I want you to know the baby is ok.  The kids are ok.  Michael is ok.

I'll try to write to you before the next Chemo.  Be gentle to yourself.  God loves you.

Love,
Yourself

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!

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."

 So...in that spirit...it turns out I have cancer, like, really have it.

Hi, My name is Nella and I have cancer.

HI NELLA.

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.

Sincerely,
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.

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.  

  

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.

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 just...open 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!

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.

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: http://homebirthgosling.tumblr.com/)

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 title...it's not too generous a title for Michael.  He is the BEST doula a girl could ask for.