It's "ONLY" Hair...

After my initial cancer diagnosis, do you know what made me cry the most? The thought of losing my hair. L Not the fact that I might have a double mastectomy at some point, but the thought of losing something that I feel defines who I am as a person. Is that weird? It’s only hair. It will grow back. But it’s MY hair and it’s the one thing that has always given me that identity of who I am (in my opinion anyways).


After extensively confirming with my doctor/nurses that I would indeed be losing my hair, I decided that I WANTED TO BE IN CONTROL. If this was going to happen, it was going to happen on MY TERMS, not cancer’s.


So when does your hair fall out? Following your first chemo treatment, they say that you can start losing clumps of hair anywhere from 7 – 14 days afterwards (or something like that). Some people cling onto their hair for as long as possible as it starts to thin and others just decide to shave it right away.


Have you ever heard the song “Skin” by Rascal Flatts? It has always been one of my favorites and I have listened to it countless times since my diagnosis. It always makes me tear up, but it also brings me a smile. J The song talks about a high school girl who gets cancer:


“Sarabeth is scared to death
As she sits holding her mom
Cause it would be a mistake
For someone to take
A girl with no hair to the prom

For, just this morning right there on her pillow
Was the cruelest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn't deny…”


“The cruelest of any surprise.” Yup….that sounds about right. No matter how mentally prepared you try to be for this moment of hair loss, I think it can be emotionally intense and painful. When will it happen? Who knows??  What’s the best way to get through this? To make sure you are surrounded by those that love you when it happens.

 
Friday, January 11, 2013 was the day I shaved my head. Correction….my family helped me to shave my head. J
 

Wanting to save at least one of my reddish curls for a shadow/inspiration box of sorts, I took the first swipe with the scissors. Snip. Instant *TEARS*. And then like a contagious yawn, I saw the tears pass to the all the faces of my family in the room. Okay….be strong Renee….you don’t want the kids to be crying about this!! It’s ONLY hair!
 

My tears subsided after that initial swipe of my hair and then all went well with the rest of the shaving.


Donned with a garbage bag over my body as a cape, I sat down in our master bathtub to have my hair cut on MY terms. It took a little coaxing and encouragement, but I got Deion and Anika to actually cut some of my hair off with a scissors. Piper was visibly upset, so I told her she didn’t have to do it if she didn’t want to. She hung in the background until Aaron started in with the shaver and then she too, decided she wanted a turn.

 
After we were done, I took a quick shower and boy was my head COLD! Seriously, I didn’t realize how much insulation my hair provided. I kept wanting to throw it up in a towel turbin…it felt so weird to not have it there anymore.


Next, we sat down to chat with the kids and tried to answer any questions they might have about my hair. We told them that chemo is a super strong medicine used to kill cancer, but that meant that it would also make me lose all of my body hair, including eyebrows, eyelashes and nose hairs at some point. (In fact, I was talking to a lady undergoing chemo and she said the weirdest sensation was feeling a “draft” on her upper lip because she could feel herself breathing through her nose without any hair to filter the breeze. That’s something I never would have thought of.)

So there you have it. 2 rounds of chemo down..check. Hair shaved…check. Only 16 more weeks of chemo to go!

I know you all want to see pictures, but I need to download from my camera and sift through the ones that I would like to post.

I played in a volleyball tournament yesterday and have more pictures to share from that as well. LOVE MY DIVA VOLLEYBALL TEAM!  (They, along with several other teams went out of their way to make my day and honor me. And that is exactly how I felt….HONORED.)

More later…

(Oh, and if you haven’t heard the song “Skin” by Rascal Flatts….you should check it out on You Tube. It’s such a touching song…I hope you like it. J)

Love to all,

Nae

My week after chemo...

Sorry I have been away from the blog for a few days. The one thing I am realizing, is that even though I am sitting on the couch resting A LOT, I don't always have the energy or the motivation to write, especially when I am feeling a bit "off". I know that several of you have been checking in to see how I am feeling and I am hanging in there...thanks!


I struggle with A:) not wanting to write when I feel yucky, and B:) not wanting to complain about feeling yucky, because I know that it will probably get worse as time goes on and there will inevitably be days when I really just NEED to vent about things. (I don't want to use that up TOO early! *smile*)

 
I have pretty much just sat in my jammies on my couch all week long. Besides joint pain early on, I have been experiencing heartburn, a metallic taste when I eat (which bums me out....I hate it when I can't enjoy the food I love!), and a tummy that has a mind of its own! Luckily, I have anti-nausea meds that I can alternate every 3 hours, peppermint gum and lemon drops from my honey, ginger candy from Aaron's volleyball teammate Kris (thank you my dear...the gift basket was AMAZING!!) and a pack of saltine crackers to help me out.

 
The two times I did leave the house, were to play volleyball in my coed and women's leagues on Monday & Tuesday. The one thing I pretty much look forward to EVERY week! How did it go? Well, besides feeling winded at times and nervous to dive with my newly placed port, it went alright. (Ok….women’s league made me tired and at one point Jen thought I looked a little peaked (pronounced pee-kid), but I was true to myself and told Amy when NOT to set me. J I was just happy to be out there with my Divas!!)

 
If there’s one thing I want to power through and do as much as possible during my treatment, it’s play volleyball as much as my body will allow. It brings me SO much joy to play and the people I play with are some of the dearest to my heart, so of COURSE I want to play!! J I have a lot of people “on call” to sub though, because I am sure that it will just be a day-by-day decision to play. For now…so-far-so-good.

 
Tomorrow, Friday, January 11^th, I will go in for my second round of chemo. I am anticipating that the side effects will be less than the last round of chemo because I will only have the 1 drug (Hercepton), instead of the three drugs I had the first round. Here’s hoping that is true!

 
Other things I am gearing up for….shaving my head. Oh boy. That’s a BIG one. I want to do it BEFORE it starts to fall out and it really could be any day now. We are tentatively planning to do it Friday night….will keep you posted.

 
A few side notes….

I love my kids!!! The girls got birthday money the other day and they told me I could have it for my chemo treatments…..SO SWEET!

When I first told my son about my port and showed him where it was, he cringed and asked if they used a “scissors” to put it in. J His innocence made me smile…

A few of you have asked to see pictures in my blog. I don't know how many I will post, but thought I would share a picture of where my port is located to give you an idea of what it looks like. It is under my skin and you will see a bump on my chest where the port actually is, with a tube running up toward my neck (where my other incision is). Again, my port is the place where I receive chemo and have all of my blood draws done, much less stressful on my body then IV sticks in my arm regularly.

Here’s hoping your days are filled with LOVE and special moments!

Love to all…

Nae

3rd Day After Chemo...

Just a quick note to check in with you all.

Last night I started to feel a slight amount of side effects from my chemo treatment on Friday. I started to feel nautious, but was able to subside that feeling with my meds thankfully! Now I am just dealing with sporadic leg/ankle joint pain. I am holding off on taking Advil until I get to go out onto the volleyball court tonight for our games though!

I am sure you all know how near and dear to my heart volleyball is...it truly brings so much joy to my life! At this point, I am going to make every possible effort to keep playing as long as I possibly can. Here's hoping I can power through it all! Just getting out on the court with my favorite coed and women's teams (LOVE MY DIVAS!!), will bring me positive energy in itself! 

Other things going on....

My dear friend Steph set up a Care Calendar starting with 2 meals a week until May...after a day's time it was already filled with meals through MARCH! Seriously?!? You guys are AWESOME! Thank you!

My dad came down to spend some time with us yesterday and today and it is so nice to have him here!

Today is Piper & Anika's birthday AND Aaron's first day at his new job! YAY!

Ok....that's all for now....I am still super behind on responding to all your wonderful notes and messages...but I appreciate them more then you will ever know!

Love to all...
Nae

That wasn’t so bad…

I had my very first chemo treatment yesterday, Friday, January 4^th and it actually wasn’t too bad! (More about the actual procedure below.)

Once again, I was inundated with LOVE from SO many people. My phone and my Facebook just lit up with messages in support of me. Many of my dear friends shared my story with THEIR friends asking for MORE prayers…it was awesome!! I had people I DIDN’T EVEN KNOW telling me jokes, asking to add me to their list of people they were supporting on the 3 Day Cancer Walk, offering prayers and words of support…I was speechless!

 

For those of you that know me well, you know that the little things in life can make or break my spirit. This can be a blessing and a curse at times. Luckily, I try to surround myself with positive people, so I experience more of the “make my day” kind of little things, then the “that really bugs” me kind. J

 

Out in public though, you never know who you will run into and how they will impact your day. I always think it’s cool when people you don’t know go out of their way to do nice things or the do “right” thing. I feel a warmth in my heart when someone opens the door for someone else, or expresses a kind word, or removes their hat during the national anthem, or when people pull over to the side of the road when an emergency vehicle is trying to get through. It is that unspoken consideration and respect that people give to other people (sometimes to people they don’t even know), that makes my day. I LOVE THAT! It’s wonderful to experience the good in people and in the past couple of weeks I have been on the receiving end of so much positive energy…my heart is just smiling from it all!

 

APPOINTMENT INFO

Yesterday, Aaron and I spent most of our day at the oncology office receiving my first treatment of chemo. We walked into the large chemo room where there were 3 sections of recliner chairs with people receiving chemo…it was pretty packed actually (which was kind of sad to think about….all these people were fighting their own battle against this HORRIBLE disease…I hoped that they all had an amazing support system like I do).

The nurse grabbed me a heated blanket and told me to pick an open chair to get situated while she got my IV bags all prepped. I sat down in the chair and just tried to take it all in. There were people at all different stages in treatment…some with no hair, some with wigs…I was probably the youngest one in the room by 10-15 years.  I was terrified and sad all at the same time…the tears rolled down my face as we waited for it all to begin. I didn’t know if it would hurt or if I would feel yucky or what to really expect, but I tried to find comfort in my mom’s cozy pink fleece jacket and in holding Aaron’s hand and seeing the confidence and the reassurance in his eyes.

After about 20 minutes of impatiently waiting for it all to begin, the nurse came over and walked me through everything that was going to happen. She was going to stick a needle in my newly placed port, flush it with saline, give me anti-nausea meds and then start in with my chemo treatment (for those of you interested in the drugs I received…I was given: Carboplatin, Docetaxel & Herceptin).

The needle stick was painful because my port was so new and a little bruised, but to be honest….that was the WORST part of the whole day! From there on it really went well. I kept waiting to feel nauseous and I never did. I actually couldn’t even feel the drugs going into my port, which was weird because I thought I would feel a sensation of some sort. Not sure if it’s different every time you go in or not, but if things go like that next time…that would be fine with me!

While receiving treatment, Aaron and I chatted with the other people in our area. It was interesting to hear their stories and about their treatment plans. They talked about the small steroid dose that I was getting and told me that I would probably be wired for the rest of the day. The one lady said she stays up until 2 or 3 in the morning the day of treatment because she is wide awake with energy, and then the days that follow she becomes more tired and sluggish.

The nurse gave me 3 prescriptions for anti-nausea stuff, so here’s hoping that I don’t need to use it in the next couple of days! Also…instead of JUST doing chemo every 3 weeks, they now want me to come in weekly for 1 of the drugs…Herceptin, so I guess I will just add that to my weekly routine.

 

My chemo finished up a little earlier than planned so I called to make an appointment to look at wigs. I really wanted Aaron to come with me for this and I didn’t know when we would have the chance to go without the kids and Aaron starting his new job on Monday. (Side note…thank you Jeannie for watching my kids all day and feeding them and us…we SO appreciated it!)

I called this place called “It’s Still Me” in St. Louis Park (it’s actually owned by a cancer survivor) and she was able to squeeze me in last minute on a Friday! Hooray!! We were there for like 2.5 hours! She told me her cancer story, showed me pictures of the stages of her hair loss and we tried on wigs, scarves and other headwear…she was WONDERFUL!  

I won’t go into hair stuff now, but I am sure I will be posting about it in the next week. I am going to be proactive and take control and just shave my head on MY terms….not cancer’s terms! (Trying to think of a meaningful way to do this…I would like to save some hair for a shadow box, but I may just have the kids help me cut part of it and then have Aaron shave the rest…we shall see!)

Ok….this is getting to be long AGAIN! Sorry I get to rambling sometimes, but I just want to fill everyone in and this is the easiest way!

Peace & Love to All!

Nae

LET THE BATTLE BEGIN!!!

Today is the day. The sooner I start, the sooner I will be done with treatment! HOORAY! I have found SO much strength through all of you....thank you for lifting me up and having my back as I enter this ring of my battle.

 

I am not gonna lie....I am a little bit anxious about chemo...the thought of putting something into my body that is so potent and toxic kinda makes me uneasy. However, I have always been one of those people that feels that in any situation....I can just MAKE it work. Since this is what needs to be done I WILL MAKE IT WORK!

 

Looking forward to having a day with my lighthouse Aaron! ;) He will guide me through this storm and keep me focused on the light. I LOVE YOU HON!

 

Alright....I am off to go kick some ***!!

 

~Nae

 

 

 

"When life kicks you, let it kick you forward."

 

Found this picture/quote on Pinterest the other day and it resonated with me, so I wanted to share.

 

I didn't pick this journey I am about to embark on, but since I have to go on it, I hope that it makes me a better person in the process. :)  I am sure I will have emotional days along the way, but I am hoping that I can find little nuggets of strength and inspiration in my everyday life. (I know that they are there somewhere...I just might have to look harder for them some days.)

 

This will be a brief blog entry because I am technically not supposed to be "signing any important documents" for the next 24 hours, since I had surgery and anesthesia today. I guess that means that I might not be very clear headed on things...better not risk sounding dumb on my blog, right? ;)

 

APPOINTMENT UPDATE

 

Today I went into the hospital to have my "Power Port" put in. My dear friend JB from college brought me in and sat with me while I waited to see the surgeon. The procedure was relatively easy (as far as surgeries go) and I was happy to be recovering with warm blankets and a surgical gown that had warm air blowing into it afterwards. (How cool is that??) I didn't know they even had such a thing, but when my surgery was completed and my teeth started to chatter, I was pleasantly surprised to have instant heat! There is just something SO comforting about being warm!

 

It's kind of crazy to think about having outpatient surgery....they just do their thing and then you are on your merry way! Other then a super sore/stiff neck, I feel fine, which I am thankful for. Being nauseous is the worst, so I am happy to not be experiencing that at the moment.

 

That's all for now...

 

Love to all...

Nae

It’s all about PERSPECTIVE.

A friend of mine has a beautiful outlook on life. We may not see each other or talk very often, but she inspires me with her own blog to think deeply and look at things more creatively through my own “lens of life”.

Speaking of lenses, she is a wonderful photographer and she is the one that gave me the inspiration to follow my passion of photography and just go for it. Do I know how to shoot manually? Nope. Do I know the perfect poses to put people in during photo shoots? Not really, but I am good at winging it. J Do I still have bad dreams the night before a photo shoot because I am nervous I am going to goof something up? You BET! Does that stop me? Not in the least. And why you might ask do I do it? Because I LOVE to take pictures, I LOVE  to try to capture people at their best…in “their own life’s moments”, and I simply LOVE the joy that I get from seeing other people’s JOY!  

Speaking of JOY (and my friend Tina), every year, she picks a “word of the year” to focus her energy on all year round. What a wonderful idea! It’s not a resolution per se, but a way to live keeping a certain theme in mind. Her word for 2013 is JOY. My word, I have decided is going to be:

PERSPECTIVE.

I need to keep things in perspective with my new diagnosis and I need to look at it from different perspectives.  Unfortunately, I often look at things from the worried/emotional view. (That can make life exhausting at times.) Fortunately, my life has been graced by an AHHHHHMAZING husband! For those of you that don’t know Aaron very well, he has a wonderful outlook on life. He is patient, calm, logical, confident and INCREDIBLY supportive and positive. He has this indescribable way of talking me through things logically and helping me to see the “non-dramatic” side of things. He is my lighthouse in the storm, always guiding me in the right direction. (LOVE YOU HON!) I could not get through this journey without him and without the love and support of my wonderful family and my extraordinary friends!

WOW, have I been simply overwhelmed and humbled by my friends and their support so far! I was telling Aaron the other day, I don’t think I have EVER had so many icons pop up on my phone at one time….Texts, Emails, Facebook Messages, Voicemails, Blog responses….I have to tell you, I felt a little bit like a rock star. J (Don’t worry, I won’t make you suffer through any of my singing. J You’re welcome.) This past week, I could just feel the LOVE from everyone and it really lifted my spirits. Love right back all of you ten-fold!!  

My blog has only been up a couple of days and it has already had over 500 page views. OMGosh….what?  No pressure to write something interesting…right? *smile* You know what that makes me think of? Wild hockey.

Have you ever been to a game? They always say that they are the team of 18,000.  Some people might think that is a little hokey….but I think it’s cool. Their TEAM consists of not only everyone on the ice and the bench, but ALL of the people in the arena cheering them on.  Their FANS are there to stand up and cheer by encouraging them to do well, hooting and hollering when they score a goal and heckling when someone messes with their team. From MY perspective, I have the best FANS in the world (my own team of ….ok probably not 18,000…maybe more in the hundreds). The number doesn’t matter though…it’s the strength of the fans that really counts….their resilience, their optimism, their encouragement. And although I am not always a fan of heckling, I give you my permission to HECKLE cancer all you want!! J Let’s DO this!!!

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Time for an appointment/medical update…

I attended a chemotherapy class yesterday to learn all about the joys of chemo (side effects, things to expect, etc.).  There are some not so pleasant side effects, but I am hoping that since I am young, maybe I won’t be AS affected by some of them. Here’s to hoping anyways… J

Wednesday, I will go in to see the surgeon to have a port put in.  For those of you that don’t know what a port is, it is something that they imbed under your skin to provide easier access to giving chemo and doing blood draws etc., so I won’t have to get stuck with an IV every time I go in. I believe it looks like a small round disk under your skin about that size of a quarter. They will put it in above my chest.

Friday, is the date for my very first chemo appointment. They told me to plan to be there a total of 6 hours. L The best part about it is that I get to spend the time with Aaron. J Here’s hoping it goes smoothly.

Again, thanks for taking the time to read my long-windedness.  This has been a very therapeutic way for me to just share what’s on my mind.

Love to all…

Nae