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.

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

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

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

Tales of Woe:

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

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

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

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

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

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

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

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

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

Tales of Triumph:

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

Remember me?

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

Chubby Trouble Maker

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

Breathing, obviously eating well, and STANDING UP

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

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

7 Quick Takes Volume Two: Sheepish Edition

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

1.  

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

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

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

2.  

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

3.  

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

4.  

Please keep praying for Ben:

Pray for Ben and his family.

and Ava:

Pray for Ava and her family.

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

5.  

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

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

6.  

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

7.  

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

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

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

Channeling My Inner Goat: What Cancer Taught Me About Negative Self Talk

One night last May, after I'd started chemo but before chemo was really kicking my butt, it was really warm.  I don't like warm.  Well to be honest it was probably like 68 degrees and I was likely having a pregnancy induced hot flash but like I said, I don't like warm.  Michael came in our room to find me flopping around on the bed like a fish out of water trying to get comfortable and we had the following exchange:

Michael:  Do you want me to grab you a blanket?

Me:  Ugh..NO...I'm DYING...

Michael:  .................................could you..........................not...........................say that?

End Scene.

That little exchange really stopped me in my proverbial tracks.  I felt horrible.  How could I use that phrase: "I'm dying" so flippantly when it was possible that I could shuffle off this mortal coil sooner than anticipated?  I could do it partly because we say "I'm gonna die" and phrases like it all the time in casual speech, which of course is how I defended this behavior to myself.  That night, in the following days, and all the way up to this moment, I've wrestled with this.  The truth is that yes, it is just a casual turn of phrase, but it is also a bad habit.  I'm prone to hyperbole and in difficult frustrating situations this is often the soundtrack in my head:

I can't take this another minute, I'm gonna die.

I will not survive this.

KILL ME NOW!! (delivered while shaking my fist at the heavens)

Am I suicidal?  Of course not.  I'm just having a melodramatic pity party, and unfortunately I'm so prone to these types of histrionics that I can easily work myself into a snowball of doom over things that are tiny and fleeting in the scheme of life.  There are so many negative aspects to this self talk, not the least of which is that if considerable time, effort, and money has been expended on a daily basis precisely so that you will not die it is kinda crappy to shake your fist at the heavens and beg for a lightning bolt because a little person wrote on the couch or whatever.

I don't mean it like that I argued with myself.  Then why say it? I annoyingly countered...to myself.  Even worse, none of the situations that prompt this sort of melodrama are actually that big of a deal.  I never go down that mental road when faced with actual trials.  When it took 4 tries to get my line in for chemo?  No worries!  Breath through it!  Offer it up!  I'm in labor with no drugs?  Enter into it.  Accept it.  Breath through it.  Offer it up.  Even that dark dark night when I found out I was a pregnant cancer patient, I never once said I would die.  I wondered how on earth I would do it, but I never once expressed a desire or a fear that I would die.

But if I have to have this conversation with my 4 year old 6 times before I get down one cup of coffee in the morning?

4 year old:  Mama?  Is tomorrow is the next day?

Me:  Yes.  Tomorrow is the next day.  It is the day after today.

4 year old:  What day will it be when I wake up tomorrow?  It will be tomorrow?

Me:  When you wake up tomorrow it will be Wednesday.

4 year old:  And it will be tomorrow?

Me:  Well, then it will be today, because it will be the day you are on.  Tomorrow means the day that comes next.

4 year old:  So Tomorrow is the next day?

Me:  Yes.  Tomorrow is the next day.  It is the day after today.

At this point in the 5th or 6th iteration of this super fun exchange I'm mentally shaking my fist and bellowing "KILL ME NOW!".  But really?  Kill me?  Now?  Awesome attitude for a cancer survivor with 6 kids.  But...BUT what I really mean is I don't want to do this now.  I can barely tolerate this now.  Spending all day dealing with little kids can occasionally make me feel like I am on. the. brink.  I don't want to die, but I start to feel like a caged animal that's getting poked with a stick.  I just want out.  I definitely don't feel like having that conversation again, or cleaning up that mess again, or keeping my composure through someone's temper tantrum again.

I was talking through this with my sister one day and I was trying to express this conundrum.  Sometimes, I told her, I get so overwhelmed and frustrated that "I want to die" just doesn't sound wrong.  Sometimes I just don't want to deal one more second.  But I obviously really don't want to die all the way...I just want a break.  Some kind of suspended reality like a coma or something, but it can't be a coma coma because it would cause hardship for my family.  It just needs to be temporary and short, like narcolepsy...and that's when it hit me.  I want to be like this:

I want to be a fainting goat.

It's the perfect plan.  The next time I hear squeals coming from the room containing 3 little girls who should have been sleeping an hour ago and I go upstairs only to be greeted by requests for more drinks, more snuggles, or pointing fingers of blame at their cell mates I just want to pull one of these:

Oh, your sister was breathing loud?  See ya.

I want to have a reset button.  When I'm on the brink of losing it and the crazy just keeps coming at me I want to be able to just hit the deck like one of those goats.  Tell me that wouldn't stop little people in their tracks.

Kid:  I want a yogurt.

Mom:  No.  Dinner will be ready in 10 minutes.

Kid:  I'm so hungry!  PLEASE!  I just wanna yogurt!

Mom:  I know you're hungry and we will eat in ten minutes.  I am done discussing yogurt.

Kid:  Mom, mom, mom, mom, mom, mom, mom, mom, mom

Mom:  

Nope.

Once I formulated this theory, that I wish I could just faint momentarily when things got overwhelming, I didn't really need to faint anymore.  Where I would normally launch a pity spiral of doom I would immediately get the mental image of a fainting goat and it would make me laugh and in a way it gave me the mental break I was looking for.  Sometimes I even pantomime being a fainting goat by dropping my head to one side, sticking my tongue out the side of my mouth, and closing my eyes.  I just let myself go kinda limp.  It makes me giggle everytime.

This is a gift cancer gave me.  It showed me a bad habit I'd developed, that terribly negative and melodramatic and frankly bratty self talk, and presented me with an opportunity to replace it with something much more positive.  Had I not faced the actual threat of death, I would have gone on indulging in these ungrateful, vapid mental rants and I would have continued to tell myself the lie that I shouldn't have to deal with the poop in the tub, the siblings bickering and needing instruction, the person driving too slow when I'm running late...I DO have to deal with that.  I have to deal with all of that, with love, with compassion, with patience, and with a positive empowered outlook.  It is my privilege to deal with that, because that is the stuff of life.  Sometimes I might not feel like being patient when someone pitches a fit right before they put their shoes on for school because the seams of their tights aren't quiet right, but I have to remember that it could pretty easily be someone else having to deal with it in my place because I'm not there.  Instead of going off the deep end and even joking about death, I'll just close my eyes and channel my inner goat.

So, the next time your kids are making you nuts, or you're stuck next to a lady at a dinner party who is droning on and on about her bunions, or someone is asking you if you're done having kids, or when you're going to have kids, or whatever it is that makes you feel like you're on the cusp of losing your goodness gracious mind, instead of succumbing to some kind of negative mental spiral, think of these guys:

You're welcome.

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!

Home Sweet Home

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

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

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

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

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

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

Madeleine holding Avery, Anna on the Right

Anna and Avery

Julia and Avery, the two littlest girls

Owen and Avery

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

Like A Toddler With A String Cheese

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

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

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

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

Like this with less attention to form and more rage.

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

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

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

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

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

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

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

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

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

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.

It Would Be Dumb To Have A Bad Attitude, Part 2: Look At My Life!

*Major sappy sap alert.  I don't care.

Seriously guys, look at my life.  I was born in the 20th century to two loving, educated, middle class parents. I've had every advantage necessary.  My parents always put us first, even if it meant we acted like we hated them for it.  I benefited everyday, and continue to benefit from the stable loving home they provided based on a strong marriage that was rooted in their love of God.  I've had good food, good medical care, a good education, you name it, from day one.  I have 4 siblings who bless and enrich my life.  My parents, brothers, and sisters love and support me constantly.  My parents come over after work so that I can rest.  My baby brother who is 20 now and not a baby anymore is over here all the time helping out.  My sister Jill will be moving near us soon and will be here all the time to help out.  Where in there is anything that gives me the right to have a bad attitude?

My husband.  Oh dear, my precious, precious husband.  My very best friend.  Our rock.  Our hero.  He provides a life for us that is downright luxurious.  We have a beautiful home, food, clothes, transportation, great medical insurance, the ability to choose any education setting or resource we feel is best for our kids, etc.  He provides for us so well that I can stay home with our kids and he does not begrudge us that for one second.  Not only does he provide this life for us while using his intellect to help others, he is a wonderful husband and father.  He is our everything and he gives everything he has to us so generously everyday.  He puts up with my craziness, he tolerates my weaknesses with patience and compassion, he laughs with me, he holds my hand and listens to me cry.This was true before cancer and it is true now.  Now that his wife is exhausted a lot he comes home from work and does the Daddy things and the Mommy things and actually does it better than I do.   Seriously, does that sound like a person who should have a wife with a bad attitude?

My babies.  We are blessed to be entrusted with 5, soon to be 6 precious people.  They peel the layers of our selfishness back day after day.  They make us laugh.  They love us and each other.  They're adorable.  Watching them grow is the toughest job I'll ever love.  I'm so grateful it's me that's sick and not them.  They need to see Mommy and Daddy being positive.  They will learn from this situation many important lessons about how to face adversity.  It is my job as their mother to set a good example for them.  A bad attitude is not a good example.  It will not make them feel safe.  It will not show them how to face the challenges that will inevitably come as they grow.  

I have a beautiful, diverse, generous group of friends who have been covering me in prayer, bringing us meals, watching kids, and being great listeners.  My freezer is overloaded and every time the slightest daylight is visible it is instantly blocked out by more delicious meals to feed my family and to take the load off of Michael and myself.  They have sent notes, food, flowers, edible arrangements, money, and so many other gifts and kindnesses that it is impossible to enumerate or to ever repay.  We have received meals even from people who I've barely spoken to since college.  I was a despicable human being in college.  I was a narcissistic mean girl who was just a disaster.    If I could go back in a time machine I would punch her in the face.  That time, when I was so yucky, was the only time in our lives we even crossed paths and still the blessings flow from all over, from friends and those who are not so close.  

And then, AND THEN:   How can I have a bad attitude when things like this arrive in the mail the day before a chemo treatment:

Yes, that is a Wonder Woman backpack.  You can't tell from this photo but it has a CAPE.  It was full of chemo comforts like a super soft cute blanket with a RUFFLE EDGE, books, games, candy, and cute socks.  Bad attitude?  With a back pack like this and friends like this?  How dare I.  I could not, I will not.

People I don't even know are praying for me and thinking of me all because of the beautiful people who surround me and reach out on my behalf.  My mother came over today after work and told me about a beautiful gesture her coworkers extended today.  My mother goes to 6:45am Mass most days before work.  One of her friends, another teacher at her school, knows this.  She spread word around the school and when my Mom arrived at Mass this morning she was surrounded by coworkers who stayed with her, prayed with her, and offered her their support.  With people like this in the world praying for me and supporting the people around me, how can I have a bad attitude? 

My life is so incredibly blessed.  Those blessings did not stop because I was diagnosed with cancer.  Those blessings are no less real nor are they diminished because I was diagnosed with cancer. They have become even more magnified in my consciousness.  So I have cancer.  So what.  Look at everything else I have!  Look at the love and beauty in the world.  It is there even though I have cancer.  Because I have cancer, I can see it even more clearly.  Bad attitude?  That would be dumb.

Mama, I'm Going To Listen To You...

...because you have cancer.

Oh. Mah. Gah.

Give me a bone marrow biopsy now.

It would be a less violent stabbing than hearing your 5 year old utter those words.  Although, it wouldn't be the end of the world if she was capable of following through.  Anna doesn't really understand what cancer means.  She is using the vocabulary we used when explaining what was happening to me.  Right now, it is utterly meaningless to her.  Actually, right now, it means to her that there are more babysitters and Mommy leaves the house without them more than ever before.  It also means Mommy lays down a lot, but in her world, Mommy's that are having babies lay down.  So basically, right now, cancer to her is no big whoop.

In the next few weeks, when my hair comes out, I imagine that will start to make an impact.  I will look sick.  Right now I just look pregnant.  Regardless of whether or not she is able to follow through on her promise of listening, I vacillate between sadness that my daughter has to think about modifying her behavior because she is aware that Mommy is having a hard time, and pride that she is capable of even wanting to modify her behavior because Mommy is having a hard time.  In the end, I know it is positive that she trying in her 5 year old way to respond to someones needs.  I just wish they weren't her Mother's needs.  At 5, she should just be needing me.

Julia and Adam are basically clueless of course.  Adam is suspicious when people come in the house because that's a sign that Mommy is leaving.  Julia asks sometimes to see my arm because she knows that's where the medicine goes in.  She actually thinks the medicine is in there somewhere she can see.  That's hard to explain because she's at that concrete stage and takes everything super literally, but it's way easier than answering a question like "Why is this an apple?", so I'll take it.

Madeleine has asked repeatedly about my hair.  It is heavy on her mind.  I've received strict instructions from her that my wig selections must be my natural hair color.  It's weird because on the one hand, it really is just about the hair right now.  On the other hand, it is evidence that this is impacting her, that she is thinking about it, and that she has concerns.

Owen asks questions that primarily focus on the science of the disease and my treatment.  He is his Dad's boy.  He want's to know why it makes me tired.  He wants to know why we have to be careful about germs.  He wants to know why my hair will fall out.  It would almost seem completely clinical and scientific if I didn't see the tense look on his face that he thinks he is hiding.  Owen is not a big talker.  I want to know what he's feeling but he will not, and quite likely cannot, tell me.  Blessedly, he will at times talk to his Dad.  Thank you God for Michael who understands Owen and his strong silence (and thank you God for the teeny bit of empathy Michael gets for me when he gets frustrated by Owen not sharing his feelings, hehe.).

Luckily, before we began talking to the kids about my cancer, I read a great book.  I read eleventy billion books!  Who am I kidding?  But the best one was When a Parent Has Cancer: A Guide to Caring For Your Children, by Wendy S Harpham.  It really prepared us well for how to answer questions and the best way to phrase your answers in a way to be simultaneously truthful but not terrifying.

But still, I don't want to hear any of my kids say "You have cancer.", because it means they are going through something challenging.  No matter how much I know overcoming challenges is actually good for them, it hurts.  I'd rather them overcome their own challenges instead of being dragged through mine.