Wednesday, September 25, 2013

Where The Rubber Meets The Road

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

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

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

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

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

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

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

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

Monday, September 16, 2013

So It Turns Out I Have Cancer

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

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

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

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

Hi, My name is Nella and I have cancer.


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

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

Dear Medical Community,

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

The Patient*

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

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

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

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

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

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

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

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

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

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

Sunday, September 1, 2013

Home Sweet Home

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

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

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

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

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

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

Madeleine holding Avery, Anna on the Right
Anna and Avery
Julia and Avery, the two littlest girls
Owen and Avery

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