A bit of Advice...

Mase and I are retiring from a week in Florida, where we visited my sister.  We had a fabulous time!

One day we visited the beach.  As I was standing, looking at the ocean, I reflected on the last six months.  I took in the moment, having the warm sunlight on my head, feeling my feet in the sand, looking back and seeing my sister who I missed so much, and listening to Mase and my nephew giggle while jumping over the waves.  It was perfect (well, as perfect as could be without Richard being there).  I'd fought hard to be in this moment.  The thought of this trip, this moment, was  what got me through some really tough treatments back home.  This was my reward.

Florida was a great place to rock the bald.  Have I mentioned the amazing feeling of feeling the warm sun on your head?  I almost feel bad for those of you who don't get to experience that feeling (okay, not really, but it really is a great feeling, especially after a cold Missouri winter).  My sister pointed out to me that at nearly every outing someone would come up to us and comment on my lack of hair. Some would offer a compliment and some would share that they, too, were a survivor.  One lady stopped us at the park and told me that I was rocking the bald look and that she was inspired by it to make an appointment for her annual check up.  Inspiring?  I don't know about that, but I LOVE that my bald head can bring some awareness (well, plus the fact that at times I can be an attention whore).  I also love hearing Survivor's stories and the sisterhood/family that we share.  While I'm happy my hair is very slowly growing back, I recognize that my gateway into the conversation is closing, and in some ways that saddens me.  Other stories and encouragement means so much to me ~ to meet someone who really gets it without you having to explain it ~ it's powerful.

My sister asked how she should handle it if she sees someone struggling with cancer.  She often feels pulled to reach out and offer comforting words, but she also recognizes it may not be her place, as some people may not want to share.  As mentioned in previous blogs, it really is a risk to say something.  Not everyone is as open about it as I am.  Personally, I appreciate when people mention the struggle (attention whore, remember?) or share their stories with me.  Let's be honest, when I rock the bald, the truth is pretty much in your face with my big, shiny peach fuzz covered, head.  Since I'm a people person and will talk to just about anyone, it is a great conversation starter.

A things to remember:
1.  If some one's struggle is obvious, I think it is okay to say something encouraging to them.  It feels good, for both the giver and receiver.  It's amazing how a stranger's words can make an impact on you.  I can still remember the woman who stopped me after walking out of a book store and complimented my newly shaved head.  I was scared and insecure about my new look and her encouragement really served as a boost for me, letting me know it was going to be okay.
Chances are if someone isn't open to talking about their situation then they would take steps to make the struggle less noticeable, such as wearing a hat or a wig (which would be dreadful in Florida!).
**Hold please, as I type this very post, a gentleman came up and started asking about my hair and sharing about his daughter's struggle.**
2.  Take cues ~ If someone is closed off after you say something encouraging, smile and walk away!  If someone is open and accepting of the encouragement, I've found that people, myself included, love sharing their story and educating others.
3.  There are lots of different types of cancer and lots of different types of chemo.  There are even multiple ways to treat breast cancer, depending on the various markers your cancer has.  I know some lucky bitches women who have had a lumpectomy and that was it.  They found and removed the cancer and no further treatment was needed.  Some survivors have to do radiation treatments (Ouch!  Think of getting a sunburn in the same spot 30 days in a row ~ oh, and I think they some how bolt you down to a table while this is happening).  Some must take hormone blocking drugs for 5 years.  Some do a type of chemo that doesn't cause hair loss.  Some chemo can be taken in a pill form, some has to be done through an infusion through a port. One friend of mine who is a straight up bad ass has had to do all these treatments.  Shout out to you Jenn!  Some drugs cause weight gain.
Me?  Oh, I was "lucky" enough to gain weight and lose my hair...  There must have been some sort of mix up because I was hoping to lose some weight and gain some hair ;).
4.  I feel like this is stating the obvious, but not everyone with cancer loses their hair.  On one hand, I find myself jealous of these folks... Although I totally admit that isn't fair.  Their struggle is just as real as mine.  Perhaps, their struggle is even harder because they don't have the chemo haircut that seems to open the door to connect with other survivors.  In a way, they suffer alone.  There is some comfort in walking through Target and not having to put on a happy face or even look presentable - I'm sick and I get a free pass.  No one expects much out of a cancer patient and I look the part of a cancer patient.  Those who don't lose their hair probably don't get that free pass.  Others may consider them less sick, while in reality they are fighting the same battle as every other cancer survivor.

Jill and I were trying to think of a good starter if she felt compelled to say something to someone.  Between well over $50k of education and two Master's in Counseling degrees all we could come up with was "Looks like you've been through some trials lately..." and go from there.  Profound? Hells No.  But I told her she needn't worry about being profound or saying the perfect thing.  Only worry about being sincere and genuine.  It isn't the words that are important, what really matters is what's on your heart.

In case you are wondering about what not to say, please refer back to the blogpost about that by clicking here.

"I Like Your Hair"

Last week in the grocery store, this sweet little girl, probably around 6 years old, looks directly into my eyes and with her big, jack-0-lantern smile says to me genuinely "I really like your hair." It was really a sincere compliment. She made me smile big.

Today, after my treatment, we went to Chic-fil-A and I'm sitting in the playland listening to Mason and this 5 year old girl play.  I hear her whisper to Mason "Does your mom have a disease?" Mason replies, "She was sick but her hair will be back soon."  They quickly moved on to talking about their pets and favorite Avengers. It broke my heart... Him having to explain my appearance.  On several occasions, Richard and I have talked about how I'm glad this has all happened before he was aware enough to be embarrassed of his mom with the silly haircut.  I was also extremely proud of him for the confident answer he gave.  I may have cried in Chik-fil-A.

One thing I love about kids is their brutal honesty.  And that brutal honesty comes from a place of wanting to gain understanding.  If they have something on their minds they say it. It's refreshing.  How many times have you had something on your mind, particularly something kind or that is coming from a loving place, and not said it because perhaps you felt it wasn't your business?  I know I'm guilty!  It's somewhat risky to say something, even kind things.  We think "I'll sound corny", "It's none of my business" or "What if I offend them?" 

Which brings me to my new friend Dolly.  Get this, she works at Starbucks in Target (2 of my favorite places!). She is super friendly and never judges me for getting my coffee and wandering around Target with nothing in my cart for an hour.  She also looks me in the eye, something people tend to less of when you have a big-bald head. Last week, she gave me the most genuine compliment: She acknowledged my struggle (let's be honest my struggle is pretty obvious) and told me that she admired my attitude.  She sees me once, sometimes thrice a week, and mentioned that clearly I'm going through something and still have a smile on my face.  The fact that she took the risk to say something means so much...  Just that someone acknowledges the struggle, because let's be honest: when I'm rocking the bald the struggle is pretty obvious.  Thanks Dolly!  See you next Tuesday, or sooner if I can sneak away for an hour long Starbucks/Target vacation.

Bottom line: Why are we so cautious to say things that might mean the world to someone else?  Perhaps we should all be more child-like and say what is on our hearts if those thoughts are coming from a good place and well intended?  For me, I'm going to work on acknowledging someone's struggle... And if a genuine kind thought comes to my head then I'm going to build up the courage to say it, even if I sound cheesy, stupid, stalkerish, whatever.  You never know, it might make someone's day.

My new friend Dolly.  She always brings a smile to my face... And always hands me a great cup of coffee... Coincidence, I think not! 

Sorry, Not Sorry

Oh my!  I just re-read my last blog entry.  I'm not sure I've ever been that angry at something in my life.  For the one person that came close: all I wanted for that girl was that she has bad teeth and bad acne, and frankly I don't even wish that on her anymore.  I'm not sure I've ever hated anything in my life.  Sorry... Not sorry.

I hope no one found my last post offensive.  I considered taking it down once I read it in a more relaxed head space.  I used some strong words.  But, the truth is I was feeling some very strong feelings.  I've decided to leave it up, because it was what I was feeling at the time.  Those feelings are part of my cancer journey, and the entire purpose of this blog is to document that journey ~ the good, the bad and the ugly.  Feelings can't hurt us (unless perhaps we keep them bottled up inside).

It's such a fine line to walk, this journey.  I certainly don't want to portray myself as being a victim.  I'm incredibly blessed.  Cancer is bad, but it's not the worst thing in the world.  I try to be positive, because that's who I usually am.  Let's be honest, it's happened and my having a bad attitude isn't going to change that.  Might as well be positive and make it as bearable on myself and others as possible.  But, I don't ever want to give others the wrong idea that it is just an 'inconvenience'.  It's much, much more than that.  It's totally okay to be angry.  And it's okay to laugh.  There are no rules. Just moments.  Some moments are just harder to get through than others.

Happy to report I am in a much better place today.  I feel better physically.  I feel better mentally.  I feel better spiritually.  Thanks for the prayers and words of encouragement, everyone!

Off to enjoy the day with my sweet kiddo.  Reminds me of a tear filled conversation Richard and I had last night:  Cancer is a family disease.  My family (Richard, Mase, The Gillispie's and the Snyder's) has battled cancer, not just me.  They've had to pick up the pieces.  They've had to watch someone they love hurt.  They have made tremendous sacrifices.  They have cried themselves to sleep.  They have worried themselves sick.  We know our family is capable of handling this, although we certainly wish they didn't have to.  Our heart especially break for our sweet Mason.  He's watched far too much tv and played way too many hours on the iPad because mom just didn't have the energy to get down and play with him.  He's had to miss out on sports opportunities because we just couldn't commit to attending practices and games.  We've been distracted, and much of that distraction has been at his expense.  We decided a family date, complete with a trip to Toys R Us is in order once this last chemo cycle is over.  Cannot wait to celebrate as a family!

Day 15: I'm exhausted

Me:  Hi Jessica, it's Julie Moss.  Again.  Sorry to bother you but you said to call back today, so...  *Embarrassed that once again I am that patient*

Jessica:  Hi Julie.  Glad you called.  Let me call the lab and see what I can find out.   

Jessica calls back:  Julie, the lab has processed your sample and are wanting to compare it with your sister's sample since you are twins.  They wouldn't share the results over the phone, so if you don't hear from me by Friday mid-morning, please call back.  Hang in there.   

Me:  Thanks for checking Jessica, I'll call back Friday.  *Hangs up the phone with big tears welling up in my eyes.* 

What does that mean?!  I don't know.  Are they comparing results because I'm negative and Jill is positive?  I mean either I have the mutation or I don't, right?!  And then I remember, some people take the BRCA test and get an inconclusive result.  Was that it?  You would think my worse case scenario would be to get a BRCA+ result.  Nope.  I think an "inconclusive" result would be much worse.  Then, you just have all the worry and anxiety without all the options or support.

I went through and read previous posts, and it seems like I was holding up okay.   Today, I'm freaking exhausted of this whole thing.  It is consuming my thoughts.  I do try to control it, but it's difficult.  Even controlling it takes a lot of energy.  My family and friends have done a great job keeping me busy, inviting us over for playdates, etc (one even hosted a dinner party!  Thanks MB!).  But, it's still on my mind.  Always.  Anytime my phone is out of sight, I go into panic mode.  The anticipation of the call is constantly there.  I have tried praying when I feel anxious.  Honestly, I'm tired of praying.  I'm too tired to even find the words (lucky for me, He doesn't require words, he knows our heart).

I went through a tough struggle about 8 years ago and I remember believing that sleep was God's band-aid.  Sleep was an escape.  I'm not sleeping well.  Can you worry in your sleep?  The answer is YES!  My forehead aches.  Not a headache, like the muscles in my forehead hurt from the constant worried scowl perhaps some botox is in order after this whole cluster.  Kidding!.  My husband offers to let me nap, but my thoughts make it hard for me to get rest.  I've officially 'gone Canote.'  I feel like I've mentally ran a marathon and as I am about to cross the finish line, they pull the tape away and tell me I have another 10k to go.  I don't have a choice but to wait.  But I am TIRED!

So, there's always a silver lining right?  Here's my silver lining for today.  Richard was laying down with Mason yesterday night and I'm in bed checking my email when this email pops up.  It goes a little like this:

From:  Richard
To:  Julie, Jill
Subject:  Howdy Sexy Ladies - Not Junk Mail :) 

Ladies,
I was reading some Facebook messages/comments from Jill's page where people were talking about the BRCA.  They were wishing luck, prayers and wishing you didn't have the BRCA.  If I spell things incorrectly or write poorly, just remember I failed college, barely passed high school and I make over {yadi-yada}k a year.  So, miracles do happen.  It's no accident that you two ended up exactly the way you are.  To create two twins with breathtaking beauty, that extends inside and out as yours does is NO ACCIDENT.  It's NO MISTAKE you're made just how you are.  When God lined the two of you up in his factory He knew exactly what He was making.  He was making a couple of beautiful twin girls that would CHANGE PEOPLES LIVES.  For starters you have absolutely changed mine, Jack's, Jackson's and Mason's.  You have both touched so many people across this globe that it's no mistake you were made exactly how you were.  The mutant gene is no mistake.  If it's part of God's plan that our families were blessed with the ability to learn about this gene early, He has truly blessed us AGAIN.  He's put us in a place to build our game plan.  I know it's scary and I know you both have a lot of anxiety.  Just know that God built you and He did an amazing job.  I know that this little test or curve in the road must have a purpose.  It's not by mistake that it's our family.  God doesn't give you more than you can handle and the two of you are VERY STRONG.  I'm so proud to be married to you Julie and so proud to be your BIL Jill.  You're amazing ladies and basically wanted you to know that God was inspired when he made you girls.  He truly was and if that gene is a part of your DNA it doesn't change what magnificent creations you truly are.  I know this is a challenge, but you're both up for it.  You can absolutely handle it and you can absolutely dominate this shit!  You're a remarkable pair and we are all so gosh darn lucky to have been selected to live life with you.  I know things will work out.  I know we will take care of this hiccup.  I know you all can do it.  Hold your heads high and push your shoulders back.  Get that little hitch back in your swag and go kick the crap outta this BRCA stuff.
RM

See why I love him so much?!  So, SO BLESSED!  And tired.