Thoughts During Treatment

Work has started back up for me and I don't have much time to write. But, I did want to quickly write this down, as I keep this blog not only to educate others about the walk, but also to document my own journey.

A few days ago, I had another treatment.  They told me I only have 3 more to go (yay!).  As I'm sitting there hooked up to the IV poll, I look around and get a lump in my throat.  I'm the youngest person on chemo-row (the treatment room is set up with probably 25 recliners all in a row) by about 30 years.  The woman next to me is struggling.  She has a walker and hooked up to an IV poll.  Her obvious wig is all askew. She is trying to get the attention of one of the very busy nurses to help her make her way to the bathroom.  (I so badly want to help, but I'm plugged in and hooked up to my own IV poll, so I know I will just be in the way.)  She appears to be confused.  She's at treatment alone. It's absolutely heartbreaking. 

Another gentleman on chemo-row is getting treatment for a brain tumor. I overheard one of the chemos he is taking and I know it's going to be a rough couple of days for him. His wife says he's been battling this brain tumor for 15 years. 

Another woman, who is in a local Facebook group for women with breast cancer, is struggling.  She says the doctors tell her there is nothing left to do.  How do you wrap your head around that?  Do you admit defeat and vow to enjoy what time you have left? Or, do you keep on fighting, praying for a miracle, even if that means you spend precious hours on chemo-row and recovering from the assault chemo does to your body.  The quality of life for these individuals appear to be dwindling and where are they spending their time?  Getting treatment or worrying about this God awful disease.  

I know of another local mother who has young children.  Her breast cancer metastasized to her brain. How do you explain that to young children? Or even your husband who has to consider what life would be like without you?  You can cut off your breast, but not your brain.  That is a whole new level of Survivor.    

As the tears started to fall, my nurse came over. (God bless cancer nurses! All of mine have been amazing!) She looked into my eyes, handed me a tissue and held my hand.  Tears started to flow even harder.  All I can muster up through my tears and sniffles is "It isn't fair." She could see exactly what I saw and didn't need me to explain.  

I feel so out of place.  I think to myself "I don't belong here" but then I remember I DO belong here. I'm sitting on chemo-row, getting the same kinds of treatment these folks are.    I'm no different from them.  That is a scary thought! We are all trying to be Survivors, some of them are just having to fight harder than I've had to.

And that's where the guilt creeps in. When I leave, my plan is to get home and run, I can literally skip out of there if I want (and I just may after my last treatment).  The folks sitting next to me literally struggle to walk 10 feet to the bathroom.  My fight is almost done. His fight has lasted 15 years and no end in site. Who knows who will help her when she is feeling sick and exhausted from her treatment.  At times, I feel on top of the world, and then there are times where I feel so guilty for being spared with a treatable cancer that was caught relatively early.  

Nailed It

Okay, so, I've committed the good, the bad, and the ugly... Well, here's some ugly:

Chemo nails

About 2 months ago, my nails started getting very sensitive, almost like each one of them had been smashed with a hammer.  I struggled to do anything that required pressure on my nails, such as opening a package of fruit snacks (not good with an impatient 4 year old) or a bag of chips (not good with a hungry 36 year old who loves her carbs).  I also noticed that my nails looked very bruised, you can see the progression in the pictures above.  About 3 weeks ago, my nails started feeling better, but also have started separating from the nail bed (yuck!).  So far, I've been lucky to not lose any of them, but goodness, this is not an attractive look.

I guess we can just file this in with the random and sparse gray hair coming in, the lack of eyelashes (by bottom lashes are completely gone and my top lashes are dwindling).

I thought that finishing the tough chemo would mean my body would start bouncing back, but I am still seeing the effects, some worse now than during treatment (the case with my lashes and nails).  I think parts of my body have had enough and held on as long as they could...  I completely recognize all these little nuisances are minor ~ I'm cancer free and that is what matters, but it's still a reminder of the assault my body has been though the past 6 months.

Yes, I know this sounds vain, but I'm hoping my upcoming surgery (my exchange from tissue expanders to my real permanent implants) will detract from my bald head, my nonexistent lashes and my disgusting looking nails.

Blessings everyone!

Chemo Brain. It's a Real Thing.

I'm pretty sure that while chemo works to kill all the bad cancer cells, it also kills a few brain cells.  I've decided to keep a running list of the stupid shit I've done over the past few months.  And, since I have cancer, it's totally acceptable to blame it on the chemo, but let's be honest, I may very well have done it, chemo or not.

I spent 3 minutes looking for milk.  In the pantry.

I put face moisturizer on my toothbrush. 

I had to look up what year it was.

I forgot how old I was. 

I arrived at church, put my car in park and got Mason out.  Luckily as I was walking into church I had this nagging thought that I forgot to actually turn my car off... Sure enough it was still on when I went back to check.  In my defense I drive a Prius and it is sometimes silent when it runs. 

Sometimes I still put a big blob of shampoo in my hand when I'm in the shower, forgetting I don't have hair.

I made Mase a coffee in his kids cup instead of a chocolate milk.  

An Exorcism of Sorts

While, I was initially on a bit of a high after completing my final chemo cycle, I've got to admit this cycle #6 took me down insanely hard and insanely fast.  Three days straight of being in bed.  I cannot even find words to describe the exhaustion.  I've thrown up.  My body aches and has had the chills/convulsions. The chemicals are finding their way out of my body anyway they can: mostly through diarrhea and sweating. My body hates me and it is fighting back. I literally felt like I was dying.  Okay, I know that sounds dramatic, but indeed I thought I was dying.  Chemo is essentially a poison that goes after all the bad cells, and frankly some of the good cells.  I was quite sure someone had gotten the dosage wrong and I had been poisoned.  I'll spare you from the details (you know if I'm sparing you from the details it was bad!), but I went through all the stages of grief in the bathroom the other night.

1. Denial - This isn't happening.  It's in your head, Julie.  Stay mentally tough.  You are at the end, you can do this!

2. Anger - You've made it this far and you are going to die now?  WTF is that Julie?  Suck it up!  Stupid f'n cancer.  I hate you!  I HATE YOU! 

3. Bargaining - Okay, God if you let me live through tonight, I promise I will watch what I eat.  Be a better mom.  Be a better wife.  Just make the pain stop.  Make the muscle tension and uncontrollable shaking stop. PLEASE!  I will never eat {fill in the blank with basically everything here - because it seems like everything is related to causing cancer} again. Please take this cancer away from me forever.  I cannot handle this again.  Make it stop!    

4. Depression - This is it.  I'm dying.  And my husband and son are going to be heart broken.  They deserve so much better.  I've fought this hard and it's all come down to some one accidentally poisoning me.  Is this really the way I am going to go out?

5.  Acceptance - This stage came around 1:30am when I could finally drag myself to bed and eventually passed out from exhaustion.  Oh, the sweet relief of sleep after one of the worst nights of my life.  

I'm curious if anyone else responded to their chemo like this?  I've handled all my other treatments relatively well, but this last one almost did me in.  I felt like they took me to the brink of dying, which I suppose is the entire point of chemo. Perhaps they upped my dose again because of my weight gain?  Perhaps my body had just had enough abuse and wasn't going to take much more? Perhaps the last 5 cycles had damaged my body enough where this one just wasn't as easily accepted. My friend, Jenny, described this episode as an exorcism ~ clearly, she knows the feeling of it all too well (thanks for those words Jenny Parker!  They hit the nail on the head).  

The good news: I'M FINISHED. God willing.  I made it! I keep doing silent cheers in my head and reminding Richard we made it through.  It feels good.  But, there is always that 'dark cloud' of "God willing." I know I should say that phrase with grace and faith, but I don't. I still feel like I'm on borrowed time, but for now I'll take it.  Off to live life.  Thankful to be alive today, in more ways than one!  

Chemo #6 - Chemo is tough, but I am tougher.

As we made the drive to the Hulston Cancer Center, Richard and I were reflecting on the first time we made that drive just over 4 months ago.  We were in disbelief that we were reporting for chemotherapy.  And today, we were in disbelief that we were reporting for our last chemotherapy.  We made it; The fight isn't officially over (I'll have infusions through November and another reconstruction surgery and at some point they will need to remove my port), but we finished the toughest rounds.  I do have a sick week ahead of me, but knowing it will be my last sick week makes me giddy.  I can handle anything just one more time.  

All smiles on his last day of chemo!  

 Around 10:00 this morning, while we are checking in for chemo, my phone starts to blow up with emails and text messages.  Richard (along with my friends Shavonne, Brian, Maria and my Mom) had arranged for people to send messages of encouragement all at once.  It was amazing.  And it made me cry.  I've said it before, but I'll say it again: I am surrounded by some amazing friends and family.  

Richard's excited about it being our last day of chemo, probably because he thinks he'll get out of taking pictures with me.

Mason was excited too...  This kid has made a lot of sacrifices during this time.  He probably isn't even aware of the sacrifices he's made.  But Richard and I are and we could not be prouder.  Team Moss: One team, one dream! 

Bummer that most of my important counts were on the low end of the scale.  But, not low enough to keep me from finishing this final round.  My body is tired.  It's struggling to put up with the stress we've put it through the past 4 months.  It definitely fights back after my treatment in a barrage of side effects.  Chemo is tough, but I am tougher.

Our final waiting room selfie before we start round #6.  Can't you tell how excited Richard is? 

Me as they are disconnecting me from the infusion machine.  I was choking back the tears.  Can't believe this chapter is nearing an end.  I'm so excited.  And proud.  And honestly, a little scared.  But overall, they were very happy tears!

I did it!  6 rounds with poison getting pumped through my body.  

A family picture right before I ring the bell.  It meant so much to me that Mase was there.  

Me ringing the bell.  Ringing the bell signals the end of chemo and is a tradition at most cancer centers.  

What meant the absolute most to me was that my family showed up to ring the bell and cheer me on! The support we have gotten from my family and Richard's family has been amazing.  We are so blessed. 

Getting cheered on by my family meant the world to me.  Jill wasn't able to make it up from Florida, but that's okay because I booked Mason and I a little celebratory trip down there.  I cannot wait to get a big hug from my sister and feel that Florida sun on my head!  

I Lied.

I lied.

In several past posts I've written about the blessings to come out of my breast cancer diagnosis.  I've included things such as appreciating my family and my great friends.  But, let's be honest, I had those long before cancer.  My friends aren't amazing because I have cancer.  Richard isn't any more awesome because I'm sick.  Cancer shouldn't get the credit for those blessings.  God gets credit.  Those people get credit.  Certainly some rogue, bastard cancer cells don't deserve the credit.

All cancer does is take.  And steal.  And abuse.  And ravage.

It takes away your ability to blissfully roll through life oblivious to curve balls.  We will always be aware that the risk of recurrence is there.

It steals away time.  The past 4 months has been a whirlwind.  We haven't been focused in the moment, we've been focused on fighting and surviving.

It abuses your body.  Scars.  Ports.  Chemo.  Steroids.  Hormones.  Hair loss.  Extremely dry skin.  Nausea and diarrhea.  Thrush.  My fingernails hurt.  I'm losing eyelashes.  Nosebleeds.  Weight gain.  Exhaustion.

It ravages your confidence.  I know that beauty comes from within.  But let's be honest, a girl likes to feel pretty.  I've lost my swagger.  I don't even have energy to walk with swagger anymore.  I used to get 'checked out' when I was out and about in public.  Now I get 'checked out' because I'm the girl that is either bald or wearing a hat while inside eating at a restaurant.

It detracts from your marriage.  Richard and I are fine and stronger than ever, but cancer has definitely taken some important things from our relationship.

It robs you of your money.  We're extremely blessed to have insurance, but even then cancer is very expensive.  For some, it wrecks everything they have worked hard for their entire life.

It suffocates: In the psychological sense that at times it almost feels like it's suffocating you and in the literal sense that I get winded simply walking to the mailbox or up from the basement.

It robs you of sleep.  The one thing that can give you a reprieve of having to think about cancer and survival... Yep, somehow it manages to take that away, too.  It's exhausting.

It makes you stupid.  It literally kills brain cells.  Chemo brain is a real thing.

It rapes you (please know I don't use that word lightly).  It takes what it wants and has zero regard.  You can't reason with it.  You can try fighting it, but even that doesn't always work.  It doesn't care who it hurts (and it hurts so many more people than just the one physically fighting) and will destroy everything in it's path.

So won't you all join me in giving cancer the big F YOU!  I'm mad.  I'm tired of being strong.  I'm just... well, I'm just tired.  Hate what you have taken from me.  I hate you.  I FUCKING HATE YOU. I'm pissed that I don't get a chance to kill you myself and see you die.  I have to take someone's word for it that you seemingly, passively left my body.  When all I really want is to see you suffer the way you have made me suffer.  Fucking coward. You came in quietly, essentially raped me, and now if you decide to leave, you will leave quietly too.  Not even strong enough to fight the way my family and I have had to fight you every minute since this started.  FUCK YOU.

*Tears of anger.*

Wow!  I feel much better now.  I needed that.

Elizabeth Kubler-Ross would be proud.

Chemo Cycle #5

Chemo #5.  Knocking these babies out!

We are getting so close to being done with the hard stuff!  We are on cycle #5 of 6 with the chemo.  I will have infusions through November, but those shouldn't bring on the sick days like the chemo does.

It's been a tough few days.  I can work myself up into a frenzy over anything!  I recently found out that a breast cancer buddy cancer had metastasized to her brain.  She's in her mid-30's and has 2 kids. It scared the shit out me.  If it could happen to her, then it could happen to me.  I shared this with Richard and we both got online and read some really scary stuff about HER2+ patients having an increased risk of their cancer metastasizing to other areas.  I felt like we could both handle this, but once we started thinking about how that sort of thing would impact Mason, it was a tough pill to swallow.  We cried.  We prayed.  And we vowed to do whatever we needed to do to reduce our risks as much as possible.

Well, our freak out came just in the nick of time, since we were meeting with the oncologist at today's appointment.  We discussed our fears and he did an amazing job at putting our fears at ease.  I am so grateful that Richard was there to have his fears put at ease, too.  Yes, it could happen, but there are also some factors that are in our favor, reducing our risk that it will happen.

Also, we were able to talk with our oncologist about my weight gain.  He assured me it was because of the chemo meds and steroids.  He attributed a lot of it to water retention and to the steroids and drugs making me hungry.  Now, I know that isn't all of the reason for my weight gain, but it was good to hear that the drugs are a contributing factor.  He assured me that it will fall off... I'm not sure I 100% believe him, but it was comforting to hear.  On a side note, he also said he would be upping my chemo dose because of my weight gain.  Yikes!  I guess that just means that I'll be getting more medicine, right?  So that's not an entirely bad thing, assuming I can handle it.

He also shared that drinking could raise my risk, like even 1 glass of wine a week can increase a chance of reoccurrence. I'm not a huge drinker anymore, so you would think this wouldn't bother me much, but all of a sudden I'm craving beer and hot wings like crazy. Apparently, I don't like being told I can't do something even if I wouldn't do it in the first place.

I'll post another update of cycle #5 soon.  Thanks for all the words of encouragement, thoughts and prayers everyone!  WE are doing this!  And I absolutely know I am not alone in this journey.  Humbled by all your thoughts and prayers for me and my family.

UPDATE: Cycle #5 has been rough.  I'm not sure if my body has just had enough, if I'm less mentally strong than before or if it is the additional chemo, but this round, I've been extremely tired.  Oh, and I caught Mason's cold.  But, I'm looking forward to a much better week next week!  One more cycle.  I can do this!

Chemo #4. Kicking Tail. Taking Names.

Today begins chemo cycle #4 of 6.  My counts were good enough and on some level I was giddy for today's infusion.  All 5 hours of it.  You see, in a few days, I'll hit a rough patch.  And after that, I will officially be on the downhill slide.  Only 2 more left after that.  THAT is a number I can live with.

My day started out with a tissue expansion fill.  Things are shaping up nicely so far.  Pun intended.

Today, during chemo, I realize I am especially blessed after I spoke with a lady about her journey.  She has pretty much been in chemo for the past 8 years.  She started out with breast cancer.  But it had reached stage 4, and had also spread to her lungs and her brain.  Her attitude was amazing.  Her journey, no doubt will be very tough, and the way it sounded it will never end.  Chemo can help manage her disease, but it won't cure her disease.

I can hear them ordering another patient morphine.  Me, I'm sitting comfortably in a recliner with my handsome, supportive husband by my side, ever so gently rubbing my leg and asking if I feel okay (chemo makes my face puffy from all the fluids and flush).  So, today I count my blessings.

Also, a good friend of ours came to hang out for a few hours of my chemo session.  And he brought lunch.  YES!  Thanks, Zach!  That reminds me of another friend, Debra, who has managed to send me a care package, complete with toys for Mason in it, for every treatment.  Even though, she has been dealing with some family health struggles, too.  And I've had numerous texts and messages from others checking in on me today.  Thanks for all the love.  Again, counting my blessings.

Richard has decided that the worst part of my chemo appointments is that I make him take a selfie with me every time.  And he can't even say no since I have cancer.  Hang in there, R.  Only 2 more to go.

Our friend Zach came to visit.  I made him join the selfie fun, too.  Loved seeing him.  He always makes us laugh!

UPDATE: While on infusion day I felt like I was kicking tail, truth be told chemo kicked my tail a few days later.  My 4th cycle hit me hard!  I spent well over 48 hours lying in bed or on the couch.  I was so exhausted I didn't even have the energy to watch TV.  I didn't sleep any more than usual, just pretty much laid there and chatted with mom when I was up for it.  Honestly, it felt like a setback ~ I handled cycles 2 and 3 so well.  I wonder if some of the chemo drugs have a cumulative effect and my body was angry, as it has reached its threshold.  I don't know, but I know it was a tough struggle for a few days.  This too shall pass.

Did I Win or Lose?

36,128

The number takes my breath away.  Seeing it instilled feelings of panic, of gratitude, and of sadness.

It doesn't seem fair on so many different levels.  I know it could be political, but I'm not going to take it there.  I'm not even smart enough to take it there, even if I wanted to.

Why me {in disbelief as I think about just how fortunate I am}?

Why me {in disbelief over my diagnosis}?

How is this even fair?

$36,128.48 - that was the number on the hospital statement that came today for a few bags of fluid that look like nothing more than saline solution one treatment.  It doesn't include the oncologist visit, or the physician assistant.  No pain meds, no operating room.  No anesthesia.  Just an old recliner that I sit in for 5 hours during my infusions.  Unbelievable!  Insert joke about how expensive my cancer hair cut is going to cost when it's all said and done.  If I had to guess, I would say somewhere around $400,000 when it's all said and done.  But I'm sure there are things I'm missing...

So, why me?? If I happen to be in another country, I might just be SOL (for my mother-in-law that stands for shit out of luck).  Perhaps I would be given some medicine or something to help with pain, if I were lucky enough to be able to afford a doctor, but no way I would get a $40k treatment.  (Reminds me of a story my parents shared with me: They visited Cuba and a local family they had befriended wanted to make a birthday cake.  They were willing to spend what little money they had to be a gracious host and struggled to find a cup of sugar. A cup of sugar.  You can buy a 4lb. bag here for $1.  But there, they simply didn't have access to such simple things.)  It's unbelievable to think just because of fate/luck/whatever-you-want-to-call-it, I get top notch treatment, where others would get substantially less.

Why me??  Sometimes I'm still in disbelief over my diagnosis.  I'm 36.  Healthy.  Happy.  Mother.  Wife.  Nothing special about me, except I've got this 'special' diagnosis, that if not caught would have killed me.  Would have cut my time on Earth short.  Would have devastated my family.  So darn lucky it was caught early, when really it shouldn't have been.

How is this even fair?  After the shock and panic of seeing a $36k medical statement, I felt a little giddy and a lot guilty.  Giddy that I know I don't have to pay anywhere close to that amount for my treatment.  Giddy that if something costs that much, surely it's bound to do some good, right?  And guilty because I know nothing in life is free.  What I receive for free is something someone else has had to work for.  I will never be able to 'repay' this debt, nor am I expected to.  Insurance (and by insurance I mean all you healthy people who have to pick up my cancer tab) just steps in and lifts that burden off of me and our family.  It isn't fair.  I fully understand insurance is a gamble, I'm just not sure if I have won or lost.  Either way, I feel blessed.

NEVER ALONE

I'm preparing to tell my cancer story to a group of students and it has me thinking about what I want to say.  Let's be honest, my blog isn't exactly academically appropriate, but I know I want to be sincere and honest and that is exactly what my blog is.  It's dawned on me that cancer is a totally fubar'd total juxtaposition of emotions.

Since the end of yesterday's treatment, I've been on a bit of a high knowing I am on the downhill side the nastiness/awesomeness of chemo (admittedly it might again be the steroids that are making me giddy too).

Chemo is harsh. It's cruel. It knocks you on your ass and makes you crazy. I hate my sick days after my treatment.  Yet, it also may very well be saving my life. Prolonging the time I get with my family. It may be totally eradicating any trace of cancer that name still remain in my body.  Or it may be doing nothing at all, except killing my hair folicales.

And then there is the feeling of being beyond fragile and at the same time like a total badass.  

Or feeling pulled to listen to some amazing worship music and some profanity laden rap music. 

Feeling like I'm holding it all together at times and also on the brink of a complete meltdown.

Blessed and cursed. 

Laughing and crying.

Praising and cursing.

Angry and grateful. 

Strong and weak. 

Excited for the end of treatment, but also beyond scared to be turned lose without supervision. Thankful for my amazing family and hating myself that I'm putting them through this roller coaster. 

Energetic and so exhausted (once again, thank you steroids).

Hungry and nauseous.

Last night, Richard came home and we turned off the tv and had a good heart to heart.  He's good like that.  He is feeling the exact same way I am.  I'm not alone.  It's good when there is someone to walk you off your crazy ledge, but sometimes it's just nice to have someone sit on the ledge with you and hold your hand.  Thanks, Richard.

This morning, after a good cup of coffee, I was reflecting on Richard's and I chat last night.  It's okay to not always be strong.  But, it's also okay to give it to God and let it go.  He doesn't want us to shoulder these burdens alone.  He asks that we trust him.  And we do.  And when we waiver, he takes our brokenness and uses it to work within us.  Never alone.  NEVER ALONE.  

"This is what makes these treatments worth it."

That sweet little face!

Tomorrow I go in for another treatment.  On one hand I'm dreading it, but on the other I'm excited about it being my 4th out of 6 treatments.  After this next one, I will officially be on the down hill of the harsh chemo (God willing).
This morning, we were laying around having coffee and Mase wanted some cuddle time.  Since he's a very active 4 year old, these moments are a rarity these days.  I remember laying there with him, smelling his sweet little breath, holding his little hand, and feeling his cold little feet on my leg.  Somehow this moment makes going in for my treatment tomorrow easier.  THIS is what makes these treatments worth it.  When I think about the choice of skipping treatments or enduring them to ensure I am around for this kid as long as I can be, it's an easy decision.  Seeing that sweet face turns my dread into gratitude that I have access to the treatment.

It's Okay. I Have Cancer.

So, I've done A LOT a few things I'm not proud of...  So this isn't a marathon post, I will limit this list to just the last few months... Otherwise, we could be here awhile.
Truth is, when you have cancer, there are just some things you can get away with:

• Like eating a whole sleeve of Lemon Oreos.  For breakfast.  Before 8 o'clock in the morning. {Thank you chemo steroids}
• Nap for 5 hours in one day.  
• Cry at inappropriate times.
• Laugh at inappropriate times.
• Want to tell some one how you really feel when they politely ask you "How are you today?"  My mind says: "Well, my breasts were plotting to kill me, my 'new' boobs feel like whoopee cushions, I've got thrush, mouth sores and I could easily poop myself any minute."  My words say: "I'm good.  Thank you."
• Retail therapy.  Especially if mom is helping you foot the bill.  {Thanks Mom!}
• Shit yourself.  I'll spare you the details.  But, let's just say I am so thankful I was home.  And a word to any of you who may face chemo in the future: Never trust a chemo fart.  
• Totally acceptable to look at boobs on your computer or phone.  Even acceptable for your spouse to look at boobs on their phone or iPad.  For once, it's called research.  
• Wake your mom up at 2:30 in the morning because you don't want to eat Reese's cereal all by yourself.
• Gaining weight.  I blame it on the steroids.  But truth is, a lot of it is that at this point I just don't give a flip.  I'm sure (at least I hope) my attitude changes once my treatment is over, but for now, I find comfort in anything carb-y and salty.  

And a few things you shouldn't do if you have cancer:

• Blame yourself.  During infusion #3, there was a newbie sitting next to me.  She was probably in her mid-60's.  She shared with me that she has lung cancer.  Then, she hung her head and said she had been a smoker for years.  My heart broke, cancer is bad enough without the self-imposed guilt and shame.  NO ONE deserves cancer.  I can assure you, if there was some sort of cancer caused by binge eating carbs, I would have it.  And even then, I still wouldn't deserve it.  Her statement made me realize that I got one of the 'lucky' cancers that come with lots of resources and research funding, financial support, and pretty pink ribbons.  Instead of a big pink ribbon, a lot of cancers come wrapped in a bag of stigma.  Melenoma?  You must have spent too much time in the sun or in the tanning bed.  Liver cancer?  Clearly you drank yourself into that mess.  Lung cancer?  You were dumb and smoked cancer sticks cigarettes, despite all the warnings.  
• Google anything cancer related.  It will scare the shit out of you... (which isn't as quite out of the realm of possibility as it used to be).  
• Use it as an excuse to be mean to your spouse.  For the most part, I feel like I've been pretty nice to my husband during these times, admittedly not exactly the kind of nice he is probably wanting, but I plan to talk to my doctor about that, but on occasion I've taken out my frustration on him.  He deserves better.  Cancer is a family disease.  My job is to take care of myself and not poop myself.  His job is everything else, the biggest which is being the sane and stable voice of reason in a crazy season.  I fall in love with him more and more throughout all of this.  
• Clean.  Life is too short to spend time cleaning.  This has always been a philosophy of mine, now I just finally have a way to justify it.  

Signing off now... Those Oreos aren't going to eat themselves.  

Chemo Cycle #3

Chemo cycle #3 - After the side effects of this treatment, I'll officially be half way through this stuff.  I'm not going to lie, I dreaded this round.  I've been feeling really good lately and didn't want to get knocked down again.   There isn't a whole lot to report, except we did meet with Dr. Ellis, my oncologist, today.  He said my counts looked really good and I'm taking chemo like a champ.  Thankful for my health, despite this cancer thing.  A lot of people have been sick this season and we've managed to avoid a lot of it!  

Dec. 29th, 2014
Chemo cycle #3

She Understands

A few weeks ago, my cousin, Athena, sent me The Velveteen Rabbit by Margery Williams.  I didn't know exactly why she was sending me this children's book.  Anyway, with all the craziness of cancer and Christmas, I put it in my bookshelf with all the other books I have planned to read and never gotten around to it and vowed to read it later.  Athena and I hadn't spoken in years, but she reached out to me after my cancer diagnosis.

A bit about my cousin Athena.  She is... A-MA-ZING!  She's brilliant, to the point where I'm intimidated talking to her.  In fact, I often have to google words in her email to find out what they mean.  She's independent; after she graduated college she moved all the way to London to pursue her dream of writing and acting.  She's hilarious.  She's drop dead gorgeous with her hourglass figure, bright blue eyes, and long, stunning, fiery-red hair.  She's accomplished, even given a TEDx Talk you can view by clicking here.  If you've got 15 minutes, watch it!  It is incredibly inspiring and worth your time.  She's immensely talented.  She's accomplished more in her professional life than I ever will.  She's feisty and a bit of a smartass ~ she comes by that honestly because it is a highly inheritable family trait.  Basically, she's a badass bitch (and she knows I mean that as the highest compliment possible!)  And, she has some challenges in her life that most of us can't even imagine (she happens to have been born with cerebral palsy).  If you wish to learn more about Athena, check out her website or her blog Never Walked in High Heels.

So in all my whining, cursing and feeling sorry for myself, Athena emailed me to offer comfort.  I've got to say, I was embarrassed.  Here I was complaining about my temporary hair loss and my year full of doctor appointments and discomfort and she has faced far greater struggles on a daily basis.  Although don't tell her that ~ she doesn't want pity.  She is more self sufficient than I will ever be.  If I had half of the balls determination she has...

I have another chemo treatment on Monday.  Honestly, it's been hanging over my head throughout this Christmas season.  I'm dreading it!

Before I go into chemo week, I go through a 'nesting' period, where I try to be really productive and prepare for my down week.  I was cleaning out my office, and stumbled across my pile of books that I have good intentions about, but most likely will never read.  Sitting near the top was The Velveteen Rabbit.  It's so unlike me to stop in the middle of a task to sit down and read, but something pulled me to open the book up and start reading.  The following excerpt really stuck with me:

"You become {Real}. It takes a long time.  That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept.  Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby.  But these things don't matter at all because once you are Real you can't be ugly, except to the people who don't understand."

I couldn't have read this at a better time.  Just last night, after the hustle and bustle of Christmas was over, I went to bed and had myself a good cry.  I miss my sister.  I hate cancer.  I fucking hate chemo.  I dread feeling sick.  I'm so over it.  I hesitate to even compare our situations.  My struggles are temporary, her's are permanent.  But, I feel like she is one of the few people who truly gets me at this time in my life.  She knows all too well about being self conscious about her appearance because of something beyond her control.  She knows what it is like to be jealous of people who take seemingly mundane things for granted.  She knows what it feels like to have people stare.  She gets that our health can be both a blessing and a curse.  SHE UNDERSTANDS.

Love you Athena!  Even from London, you knew exactly what I needed and sent it when I needed it!

The JV Symptoms - Yikes!

So, I'm well on my way to having completed two chemo cycles.  Only four more to go!

Since I'm about a week out from my infusion the "JV symptoms" have started.  These symptoms aren't as severe as as the nausea and bone aches, but every bit as annoying as a freshman.  I'm talking abdominal cramps, random diarrhea and sporadic nose bleeds.  At the same time.  At 4:30 in the morning.

Let me tell you, I must have been quite a site as call out to Richard over the bathroom fan to come help me because too many of my body parts are leaking at one time.  Try it: holding your head back, to keep blood from dripping on the pillow you are doubled over on, all while you are sitting on the toilet.  Now, with your third hand and your eyes closed (because you can't see because your head is tilted back) go ahead and reach for some toilet paper so you can tend to your nose and your bum.  Oh... then for good measure swallow some of that blood that is dripping down your throat and start to gag once you finally make it over the bathroom sink.  Mercy!  My bathroom looked like a scene from Dexter.

I was so frustrated over that whole incident that I couldn't get back to sleep.  Small victory: I did resist the urge to get up and eat a piece of the chocolate cake that was in the fridge :).  So, while I couldn't sleep, I spent some time talking with God, another victory.  I didn't try to rush through my prayers like I often do, I spent some real quality time with Him.  Thanking him for the many blessings in my life.  Thanking him that it is me and not Mase.  Thanking and praying for Richard.  Praying that the doctors would discover that they had made a mistake and that it wasn't necessary for me to continue on with the next four chemo cycles.  Thinking of the wonderful families that raised Richard and me... And how because of their example we are equipped to raise Mason.

Still blessed.  And thankful for some quiet time with God.  And a husband that tells me he loves me and asks how he can help over the bathroom fan, a bloody mess at 4:30 in the morning.

Fill 'Er Up... And Round #2

Today, I had my first expansion appointment.  Yay for more natural looking boobs!  While I was nervous, I've got to say the expansion was a cake walk, so far.  I was told that I may experience some tightness and soreness this evening and tomorrow, but I'm feeling like a badass today, so I'm not too worried about it.  I just hope that soreness moves on before the chemo symptoms are in full swing.

DCP, my plastic surgeon, walked in made some small talk and got to business.  He took a stud finder type tool to identify where the ports on my expanders are located.  Then, he numbed me up and I could barely feel the needle in my right breast, but felt a bit more of a pinch in my left breast.  Then, he took a syringe and filled each breast with 60cc's.  It was a piece of cake.  And I could immediately see a difference.  Yay!  My breast expansion has been pretty much been put on the back burner, my choice.  It just doesn't seem as important to me and since my chemo will slow down my exchange surgery, I am taking my sweet time.  But, I must admit, seeing a bit more of a breast mound made me feel good, closer to my normal.  

He couldn't nail down the plan exactly, as I get to pick how big I want to go, but he anticipated that I will need 4-5 more fill appointments and then will be able to do my exchange 6-8 weeks after my last chemo infusion.  I will still continue with the Herceptin infusions for a year, but he will do the exchange once my 6 chemo treatments are complete.  Looks like by May I will be swim suit shopping... And I'm hopeful that my swim suit options will be a little more generous since I can be a little less worried about the support factor.  

Next, we headed over to the Hulston Cancer Center for my chemo infusion.  While I dread chemo's side effects that will hit Saturday afternoon and last for 3-5 days, I found myself looking forward to some alone time with Richard.  Again, chemo infusion day is almost relaxing.  Not horrible.  And, I don't feel nearly as self conscious with my hair issues if I'm in a doctors office.  Another win.  Always a silver lining.  Feeling much more normal today than I did yesterday...  God bless everyone!

Abundantly Blessed

For the most part, it's been a good week.  I'm finally getting over a cold, which I likely got while my immune system was down.  Thankful I am starting to feel better and also that I am hopeful I will be well for my next treatment, which will be this coming Thursday.  

Ugh!  I have a love/hate relationship with my treatments.  I dread it.  I've found my good days getting clouded by the dread of knowing what's to come.  I know next weekend I will be very sick, very achy and not able to do much of anything.  I know my only goal next Saturday, Sunday and Monday will be to make it through the day.  It almost seems sinful to waste a good day, such as today, with worrying about the future.  But, the worry manages to creep in.  

I also love the fact that after my next treatment, I will be 1/3 the way through.  And by New Year's I will be half way finished with my sentence treatment.  I'm hoping to have a cute, spunky hair style by summer.  I can do this!  It's just a season, right?  Come to think of it, New Year's day I will likely feel the same way some of you may feel on New Year's Day.  Hungover.  I guess I can take comfort in knowing my chemo hangover isn't of my own doing.  

Okay, back to being abundantly blessed.  I've been working on Christmas cards, and as I write each one, I am reminded of why I am abundantly blessed.  It isn't at all the things around me, it is the people around me.  It's my boss and department I work for that has been beyond supportive of me.  It's my friend Joni in Marshfield who watches Mase when I have appointments and showers him with love.  It's my friends Sam and Tara who I haven't seen in nearly a year and continue to text me at those times I need the support.  Their texts of encouragement always seem to come just when I need it.  Or my best friend from high school Sarah, who always makes me smile and we can pick up a conversation so easily just like we did in high school.  Or my mom and dad, who have been beyond supportive of me ~ not just with this cancer ordeal, but my entire life, whether I deserved their support or not.  And my sister.  Especially my sister.  Today she told me "it's okay to tell me when you have bad days.  You don't need to protect me from those.  I want to be there for you."  She said she can tell when I have a bad day because I won't answer my phone.  She's right.  She knows me all too well.  I miss her something awful!  

And then there is my little family.  I look at Mase and I just want to cry ~ but in a good way.  I love the little guy he is becoming.  He has a heart of gold!  I am so thankful that he's not old enough to be embarrassed of me and my bald head.  That would break my heart.  Instead, he helps me pick out my hat and headscarves, and I almost always go with whatever he picks.  If only time would slow down.  That kid has my heart.  I love him so much that it makes my heart ache, again in a good way.  And then there is my husband.  Who continues to shave his head since I am losing my hair.  Who still wakes up in the middle of the night to ask me if I need anything.  Who loves me unconditionally.  And supports me and encourages me to be me...  I am humbled that I get to be married to such an amazing man and that Mason has such an awesome example of a man to look up to.  I love both of them so much it's quite frankly hard to even put into words...  

Even though I have this cancer thing going on, I still feel like the absolute luckiest girl in the world. 

Hair Today, Gone Tomorrow

This week I have ventured out a few times.  Sometimes I'll wear a hat, sometimes I've rocked the bald, and sometimes I have worn a head scarf.  I thought I was strong enough to rock the bald, but now I am not so sure. Maybe it's all in my head, but I've noticed people look at me differently than they did when I had hair.  Men will glance at me and quickly dart their eyes away.  Women often look at me and give me the ever so polite head tilt and a slight smile, as if to take pity on me.  Children stare and sometimes whisper to their parent about the lady with a bald head.  I can't say I blame them.  I'm sure I would have done the exact same thing when I was a child. Kids are curious and I love that!

I especially felt self conscious as I was trolling through Target and saw a group of women close to my age laughing it up and flipping their long, blond, straight hair all around.  It made me sad and self conscious.  I once was confidence in my appearance and that just simply isn't the case anymore.  And perhaps there is a lesson in all of that, that appearance isn't everything, but let's be honest: it's something.  

I'm very open about my cancer.  I blog about it and post my ramblings on Facebook.  The thing about losing your hair, you can't hide it.  It feels so vulnerable.  And even though I am an over-sharer, I would like to have the option of when I share and what I share.  Looking at me, a stranger could probably not even tell I had a mastectomy.  My breasts will soon get pumped full of saline as I go in for my expansions.  But my hair, or lack of, is one of the first things people notice and it isn't near as easy to hide.  I feel like I have a 'cancer' bumper sticker on my big, bare forehead.  Some days, I'm okay with that, but some days I just want to blend in.  So, while I can put up a brave, happy-go-lucky face on my blog, going out in public is a lot more difficult for me now.  I'm constantly looking around judging peoples reactions.  I totally acknowledge it's very ego-centric and reminiscent of junior high school.    

I do have my sassy red wig.  But to be honest, when I put it on I feel like a giant faker.  And it's itchy.  And I would constantly worry if it is on my head right.  It's not the real me, and I pride myself on being real and authentic.  The other three options of hat, head scarf, or bald just make me look like a cancer patient.  And, I suppose that is okay because I am a cancer patient.  But even this over-sharer wishes I had a bit more control over my over-shearing get it, share - shear?! HA!.

Yesterday, on Thanksgiving, my hair officially started to fall out.  I would take a little pinch of my short, dark hair and like 20 little hairs would come out.  Richard shaved my head even shorter, in hopes of lessening the patchy baldness.  Even though he acted like it was no big deal, I can't imagine that was much fun for him.  Even though I shaved my head nearly two weeks ago, it's still a shock to me.  Just makes it all so real.  Honestly, on one hand I'm glad it started falling out.  I've been dreading it.  And, in my small little mind, it shows me that the chemo is working.  If it is destroying my hair growth, perhaps it is also destroying any rogue cancer cells in my body.

It's just hair.  It was hair today and will be gone tomorrow.  But, it will grow back.  Small price to pay for reducing my cancer reoccurrence rate, I suppose.  

Hot Mess

You know my pretty, positive, uplifting posts?  Warning: This isn't one of them.  And that's okay.  I started this blog as a way to document my journey and to share with others in hopes that someone else would find comfort in my sharing of this BRCA stuff.  When I started it, little did I know the gigantic turns my story would take.  But, my dream for this little project is that someone finds my story and can relate to my journey.  I hope when they find BRCA and Blessings they can find a lot of truth and a little humor.  So, I've said before, I'm committed to sharing it all, no matter how ugly.

Today, boys and girls, we are going to discuss chemo's side effects.  Again, I don't share this post to seek sympathy, but in hopes of giving someone the real deal on my experience.  I'm not going to sugar coat it, but I'm also not going to make it sound worse than it is.  I have cancer, I'm not dying (oddly I feel confident saying that statement, at least for now).  

Day 0:  We'll say this is the day before my infusion.  On this day, I'm prescribed a steroid to take twice a day.  A good patient would know why they are taking what medicines, but I am taking so many, quite honestly I can't keep all their specifics straight (I do have the days and dose down, so I'm not a total idiot).  I want to say the steroid is used to help my body not reject the chemo drugs I get during my infusion, a sort of primer perhaps.  The side effects of the steroids are an increased appetite and perhaps a boost of energy.  I definitely had an increased appetite, but I'm not sure if that was legit or more of a psychosomatic effect.  I mean, when someone tells you you will be hungry, maybe we allow ourselves 'permission' to behave in that way.  

Day 1:  Infusion day.  If you missed my post on infusion day, click here.  Physically, infusion day is no biggie, just a few needle pokes for blood work, a Pulp Fiction sized needle poke to access my port and a lot of sitting around.  Along with trips to the bathroom because of all the fluids you receive during treatment.  The chemo drugs I am taking are called Taxotere, Carboplatin and Herceptin.  I don't know the doses of these drugs but I believe they are based off of my weight.  I asked the nurse where on the chemo tier my drugs fell and she said I was receiving a moderate chemo, as far as side effects go.  

Also, during the infusion you are given several other drugs through your port, all aimed at helping your body not reject the chemotherapy.  Benadryl was one, but I believe I also got some additional steroids, some fluid, and a shot of something else.  Interesting fact: one drug I took at the beginning of my infusion I could instantly taste in my mouth.  Sort of reminded me of the time in high school I took a shot of Everclear (shout out to my high school buddy Sarah and my sister)!  Gosh, you only do that once, although it appears I will be doing that 5 more times as I finish up my 6 cycles of chemo.  

Day 2:  You'd think I'd feel yucky on day 2, but you'd be wrong.  Day 2 was a good day.  I guess chemo is a slow poison, so it takes awhile to get to work.  My nurse practitioner explained it to me like this: chemo is an avalanche.  It wipes everything out that is in it's way.  It wipes out the aggressive cancer cells that could be floating around, and it also wipes out any other fast growing cells in your body, hence the hair loss, digestive changes, and some of the other chemo side effects.  Chemo affects all fast growing cells, but it isn't exactly able to target just the bad cells.  It basically busts up the entire party, instead of just removing the few obnoxious drunks.  

On day two, I have to go back to the hospital exactly 24 hours after my infusion to receive a shot called Neulasta.  This shot basically goes in and revives any survivors of the avalanche.  The nurse who gave me the shot mentioned something about it stirs up something in your bone marrow (which means extreme body aches starting Day 3) and helps you produce the white blood cells you lost from your infusion.  I also continue to take steroids on day 2, along with anti nausea medicine, a Claritan (I forget why) and start taking an Aleve every 8 hours.  Really, there are no side effects present on Day 2.  

Day 3:  Just when you think you may come out of the treatment unscathed, Day 3 in the afternoon is when I notice I'm starting to feel a little off.  The aches start to set in.  I really didn't have a lot of nausea at this point, at least nothing like they show in the movies, but I am encouraged to take the 2 different nausea medicines they give me prophylactically.  I also continue to take Aleve every 8 hours (or more honestly every 6 hours because those whole warning labels on those packages are really just suggestions, right?  Remember, this blog isn't about what you should do, I'm just telling you what I do).  Another side effect I remembered on Day 3 is this is when the extreme night sweats started.  We are talking I wake up and my pillow is wet, my pajamas are wet and the bed is wet.  I had chills, but I'm not sure if those were legitimately the chills or if I was cold because I was sweating so much.  I'm writing this post at 4:17am on Day 8 and I have gotten up at 3:30am every morning since Day 3.  So I'm not sure how, but chemo definitely affects your sleep pattern as well.  

Day 4:  BOOM!  This is the chemo day you see in the movies.  I had just slight nausea but the body aches are in full force.  And we are talking an body ache like I've never experienced before.  Everything hurts.  If I had hair, I know that would have even hurt.  This day is when I truly felt like a Survivor, this chemo bitch is serious!  I know they say Survivor referring to cancer, but I also think that term is very appropriate for Day 4 of chemo.  On this day, I took a total of 4 naps all between the time I woke up and the time I went to bed at 7 pm.  The level of exhaustion is indescribable.  I was too tired to watch tv or check Facebook.  I literally just laid in a dark room with my head under the covers all day.  The night sweats/chills continue.  

Day 5:  For me, I started to see some progress the afternoon of Day 5.  I didn't feel great by any means, but I didn't feel like I wasn't going to make it.  I still had night sweats/chills but they seem to be getting less frequent and less intense.  The body aches are still present, but easing up a bit.  The exhaustion level is still extremely high, but not to the debilitating point it was on Day 4.  On day 5 I experienced a bit more nausea than before, but perhaps I got a little over confident and eased up on the nausea meds thinking I was out of the woods.  Won't make that mistake again.  

Day 6:  Day 6 is again a day of improving.  In fact, I felt well enough to do a little shopping with mom and pick Mason up from preschool.  I did have some stomach cramping and some slight diarrhea on this day, but perhaps it was due to the poop cocktail (Miralax and apple juice) I had the day before.  I didn't feel constipated, but I went several days without dropping the kids off at the pool, so I wanted to make sure I didn't get constipated.  I do know one of the side effects of one type of chemo is diarrhea and another chemo has a side effect of constipation.  So, I'm not sure what caused this little hiccup.  

I also developed a canker sore in my mouth and thrush.  I know, I'm a hot mess!  Thrush is basically a yeast infection in your mouth.  Thrush and mouth sores are a very common side effect.  Our mouths are dirty and eating can create a bit of trauma in your mouth.  Most people can get a minor scrape in their mouth and your body automatically fights any minute infection that develops (aren't our bodies amazing?!).  My body cannot battle infection right now, which is why there is an overgrowth of yeast and mouth sores.  I've been trying to do a baking soda/salt mouth rinse a few times a day to help avoid these symptoms, but obviously I wasn't doing it enough.  I've since started another medication to help with the thrush.  

Day 7:  Aside from the thrush, some very mild nausea and just a bit of tiredness, I certainly feel like I'm on the mend and experienced the worst part of the chemo cycle.  I'd say I am running on 80% and considering where I came from, that is truly a gift!  I did have a random nose bleed today, but luckily it was stopped within 3 minutes and didn't hurt at all.  Chemo dries up your mucus membranes and dries your skin out terribly bad, so I think that was the reason for the nose bleed.  

Okay, enough of class for today.  Wishing that everyone who reads this blog lives today to the fullest.  Be grateful for your health.  Take advantage of being healthy enough to play with your kids or love on your spouse.  

  

Day 4: A Roller Coaster of Ramblings

Hi all!  I've wanted to keep up and have thought of tons of things to write about,  but honestly, I just haven't had the energy.  This cancer roller coaster is not for the faint at heart.  Maybe there's a common denominator (that common denominator is me and my big ol' bald head ~ more on that later) in a lot of my posts, the highs and lows of this journey are ever twisting.  To the point of nausea.

Speaking of nausea, I'm writing this at 2:40 am because I am up with achy joints, and you guessed it, the dreaded nausea which supposedly and ironically can be treated with joints.  See what I did there? :).  In truth, the nausea hasn't been overwhelmingly bad until now.  In fact, I have a couple of girl friends who seem to have pregnancy nausea that is way worse than what I'm experiencing.  Also on the topic of nausea, I just laid in bed a fucking hour trying to convince myself I wasn't nauseous, all because I was actually too tired to get up and take a Compazine or Zophran.  Yes, the nausea is such a dreaded side effect that they actually give you two drugs to combat the side effects.

That reminds me, there was clearly a distinct marijuana smell from a patient at my chemo appointment last Thursday.  Richard and I decided that it was probably one of the few doctor offices where such an odor wouldn't be considered downright offensive.  Every one is trying to make their way through this, no matter what.  And they sure as heck aren't going to face any judgement from me.  I just wished I liked pot.  The smell makes me sick.  You know the one I'm talking about...  Okay, I've got to stop writing about pot because those strong, thin muscles that are attached to your tongue are starting to tighten as I think about it.  {Gag}.

Some of you are wondering what 'this' feels like.  Here's a little text I sent out to a few of my close friends tonight:  "It's been a rough day.  I'm not in pain just achy, extremely tired and uncomfy.  I am eating and have managed to take 4 naps and a bath.  More than anything my heart is happy.  My body is sick, but a happy heart and a solid, peaceful mind is a great thing!  Still blessed.  Thanks for checking in."

Okay, now onto my roller coaster of ramblings... I've actually been keeping a short list in my phone of things I want to write about when I have the energy.

• The first one was how I laid in bed an hour trying to decide if I was truly nauseated or if it were all in my head.  
• Today was the first snow of the season and seeing Mason's face light up as the big flakes fell was damn near magical.  I will say, even though I don't feel well, there are worse things than just laying in bed, listening to your mom and little family scurry around the house and watching it snow.  
• So thankful for the time I've had with my family through all of this.  Richard has been with me every step of the way.  And so has my mom.  We probably laid in bed together for hours today.  There wasn't even a lot of talking, just a lot of hand holding and her asking me if she can get me anything to eat or drink.  For those who know mom, you know how she loves to make people feel better with food.  It probably breaks her heart that she just wants to cook me something homemade and all I want are these delicious, store bought, scalloped potatoes.  My mom isn't the 'store bought' kind of lady.  She labors in the kitchen and cooks with her whole heart.  *Mom, don't worry, I know you threw that cardboard box of potatoes in the oven with all your heart too.*  
• Damn, it's cold without hair.  Like all the time.  I literally spent my day curled up in bed, with a hat on (and an eye patch Mason thought I should wear).  To my dad, my brother-in-law Jack, Brian Blackford, and a few other guys I know, my apologies for making fun of your cold, bare, bald heads.  Just smile slightly and know that karma is a bitch and I am now eating my words!  
• Speaking of eating, I am so exhausted lately that I told my mom "even chewing seems like a lot of work."