What's New, Cool Friends, and a Few Pictures. :)

First off, Happy Belated Mother’s Day to all of you that have children! I hope you realize how valued you are, even if your kids don’t tell you as often as you’d like. J Being a parent is a tough job at times, but it is also very rewarding. I hope your rewards out-weigh your challenges and that you feel loved every step of the way.

I meant to post to my blog last week, but got a little sidetracked. Besides trying to tie up all sorts of loose ends before surgery, I came down with strep throat on Wednesday. UGH!  When it rains….it pours. Not only did I get it, but all 3 kids came down with it too! Oh well, the good thing about strep is that once you are on antibiotics for 24 hours, your symptoms typically subside and you are no longer contagious. (It’s not like getting a cold that lingers on and on, thankfully!)

After about a day, I felt much better and was able to tackle some more things on my list. When I got the diagnosis, I was concerned that my surgery would have to be postponed, but I was happy to hear that since I was feeling better so quickly, it would not affect my surgery after all. SO THANKFUL about this!

I was originally planning to walk in the Race For The Cure with my team, but my doctor advised me not to walk, so I got a wheelchair instead. He didn’t think it was a good idea to wear myself down before my surgery on the 14^th. (A huge thank you to my friend Erikka for lending me her grandmother’s wheelchair for the race…it worked out perfectly!)

I will post more later about the Race when I get the pictures all sorted from my photographer friend Jodi (who cheerfully braved the chilly temps yesterday morning to capture us all). Thank you my friend!

I DO, however want to post some pictures from a while back. Remember when I said I have the best friends? Well, I do. And in this post, I want to recognize my volleyball Divas for being some of my dearest friends.

After shaving my hair during chemo in January, I was contemplating what I would wear on my head for my first volleyball tournament. I couldn’t wear my wig, so I settled on wearing a little black hat with a red headband to match our jerseys. I was a little apprehensive about showing up at a tournament for the first time without hair, but was quickly uplifted by my wonderful friends once I arrived.

Everyone was there early to greet me and they even brought me a gift. A gift, for me? The words on the outside of the package confirmed something I already knew in my heart. ”We have your back on and off ‘the court’. We Love You So Much.” Jen, Monica, Carol, Shari, Nicki, & Amy.”

Well you know what? I Love You Guys TOO!!

I carefully opened the gift (knowing that I would want to save the wrapping with this very special message from my team; my FRIENDS). What awaited me on the inside, was a beautiful surprise that brought tears to my eyes. New team jerseys…in MY HONOR. The Divas are going PINK!!! The color of the shirt represents what we are fighting and the word TENACIOUS represents just HOW we are going to FIGHT it! Not only did the Divas get new shirts for our team, but they also ordered Tenacious shirts for all of the Diva kids and spouses. (Pink for the girls and black for the boys.) I am sorry, but HOW COOL IS THAT??? J It was an amazingly thoughtful gesture and it still brings tears to my eyes when I think about it! (A huge shout out to Shari for designing the shirts, and to Business Impact Group (BIG) in Chanhassen for printing them so quickly!)

The shirts probably look familiar because they were the springboard for designing the Arrowhead Benefit shirts for the tournament this past March. We decided to use the same artwork, but we updated it to say Arrowhead, instead of Tenacious. The Divas spent hours upon hours preparing for the Benefit and it was a HUGE success. Calling for donations, making blankets and gift baskets for the raffle, calling t-shirt vendors for quotes, sticking hundreds of labels on raffle tickets, donating their time to site direct during more than one tournament, the list goes on and on! My Divas worked HARD and it showed! Thank you ladies!! *mwa*

I also have to send out a huge thank you to Rick Barto (MN Volleyball Association) for organizing the benefit tournament every year, for helping us every step of the way, and for his donation to the Susan G. Komen Breast Cancer Foundation. Thank you Rick for all of this and for your supportive words and prayers...I have so much respect for you and all that you do and give to those around you! (Gosh…I know I am forgetting people…there were several people that helped site direct at the tournament so that more money could be donated….Aaron, Cathy, Leslie, Traci, Brenda to name a few.)

I am pleased to announce that we raised a total of $3,629 to donate to Susan G. Komen!! WOOT!! WOOT!! Thank you to everyone that bought a t-shirt or raffle ticket, or donated items or time to this great cause!! I appreciate it more then you will ever know…

Here are some pics of our jerseys and the Arrowhead Benefit (you should be able to click on each picture individually to see them up close):

 




What’s next? Well….surgery is bright and early tomorrow morning. I honestly haven’t had time to really think or worry about it, but maybe that’s a good thing. J I know that I will be nervous in the morning when it all begins, but for now, I am trying not to think about it as I cross more items off of my list of things to do. If you have a moment to say a small prayer that all goes well….I would welcome that!

To all my dear friends and family…I love you very much and will post more as soon as I am up to it. Thank you for all you have done to support me thus far….

Love to all,

Nae

It's Me Again...

WOW....2 posts in 2 days? I know....SHOCKING! *smile*

My photographer friend Tina posted a blog today and included some of our photos from our first session. Her blog is titled "Beauty Rules Over Breast Cancer" and I absolutely LOVE IT! She always speaks so eloquently...always providing inspiration. Thank you Tina!!!

You can check out her wonderful blog here:

http://tinavegaphotography.com/blog/2013/05/beauty-rules-over-breast-cancer/

Oh....and I meant to say in my last blog that I am feeling better this week! Hope it continues...

Love to all,
Nae

Happy May Day!!

Ok…so you may not be very happy on this cold and wet May Day, but it IS May and that means that warmer weather should be here to stay sometime soon. I think. I hope? Let’s try this again…I KNOW. The power of positive thinking….right? I KNOW that May will have MORE warm days than cold days…it just might not seem like it right now. J

So I am realizing that I really haven’t written in a very long time. Sorry about that! I think I just got sidetracked with being busy (state volleyball tournaments, weddings, showers, impromptu dental appointments). And then after I had my very last big chemo day, I wasn’t feeling so hot, so I wasn’t up for writing much of anything.

My oncologist says that chemo is cumulative so that it builds up in your system over time. I can tell by my finger nails and toe nails. They look pretty awful right now….bruised and yellowed in places with a tendency to bend backwards in pain when I catch them on things. I had no idea that this was even a symptom of chemo, but a survivor I recently met, told me that they will probably fall off. Lovely. I have never been nail-less before. I guess that is just part of the deal.

Other than having nail issues, last week I felt pretty nauseous, tired and I had a hard time eating. It wasn’t hard to eat because my stomach felt off; it was difficult to eat because things just tasted awful. It bums me out when I look forward to eating something and then it just tastes off and it is hard to swallow. That is one of my least favorite symptoms of chemo. (Not that I really love any of the symptoms…but the taste thing just bums me out…because I love to eat and I love to ENJOY my food!) The good news is that I didn’t get hives this time around. Hooray!

So my last big round of chemo was on April 19^th. What does that mean? Well, instead of going in for harsh IV chemo drugs every 3 weeks (Carboplatin, Taxotere and Herceptin), I will only have to go in every 3 weeks for 1 of the drugs (Herceptin).

What’s the scoop with Herceptin? Well…it has been the drug I have received intravenously every week since I started chemo on January 4^th. It is supposed to be the drug that carries the least amount of “chemo” side effects of the 3 drugs that I have been getting, so I hope to feel better moving forward. Oh…and my hair should start to grow back too! Yay! (It will be interesting to see how it grows back…people keep telling me that their hair grew back thicker and curlier. Since I originally had thick, curly/wavy hair, I just hope it comes back the same, if not similar. We shall see!)

The one risk that comes with taking Herceptin is the risk of REVERSIBLE heart damage. (And yes, I did say reversible.) I had an Echocardiogram before starting my treatment in January, I had a follow up Echocardiogram last Friday and will continue to have them every 3 months to monitor my heart function until I am done taking Herceptin at the end of 2013. I have not gotten the results from Friday’s test, but I am hopeful that all is well.

Other things that are coming up soon…Race for the Cure on Mother’s Day and then surgery 2 days after that. Also, I will have another journal entry and some Benefit pictures to post in the next week.

Thanks for following along with my journey... J

Love to all,

Nae

I have the best friends!

Really. I don’t think I will even be able to talk about them and all they do in one post. So this post is going to be dedicated to 3 people that have kindly agreed to help me document my journey! More cool friend posts to follow. J

Cancer. The word sounds so…Dismal. Sad. Final.

Not in MY house!! I refuse to let cancer be ANY of those words. I am lucky…my prognosis is GOOD. My cancer is localized and CURABLE. While it may not be a picnic to go through the treatments to cure this ugly disease, it is DOABLE. And that is just what I plan to do. Since getting the news, I just keep thinking LET’S DO THIS!!

But I can’t do it alone. My positive attitude comes from not only having a HUGE “chandelier” at the end of my tunnel, but from the outpouring of love, support and encouragement that I have received from my family, my friends and the new people I have met along the way. I am the sum of all my parts…my life experiences (both good and bad) and all the people that have touched my life and shaped me into who I am for the last 36 years.

And yes, I did say the bad experiences…I am thankful for them too. I probably wasn’t so keen about them at the time they were happening, BUT they helped to make me who I am today, and I am happy with who I am, so I guess that would make me thankful for having gone through them. J

I saw this quote in 2009 and decided to save it. Now I know why. I think Ellen hits the nail on the head. She is an amazing person with a WONDERFUL perspective on life…and she makes me laugh, which I love too!

"I know for sure I would never change any of the hard times I went through in my life. Because it was in those times that I grew the most and gained the most perspective.

It's our challenges and obstacles that give us layers of depth and make us interesting. Are they fun when they happen? No. But they are what make us unique. And that's what I know for sure…I think."

Ellen DeGeneres

Ok…back to talking about my friends. J (Although I *wish* Ellen was one of them…SOME day I will get to her show!!)

So I want to document my journey. ALL of my journey. I may not choose to share some of the more “raw” photos along the way, but I want to have them to remember where I have been and how far I have come. I have taken photos of various aspects so far, but the tricky thing about being the subject of the photos, is that I can’t really document myself very well. (Believe me…I have tried.  I have tried using mirrors and stretching my arms out as long as possible with my phone, but that gets kinda tricky!) Who better to ask to help me document my journey then two of my photographer friends?

 My friend Jodi Addy and I started to get into photography around the same time. We met playing volleyball many years ago and both enjoy the creative side of life as well. Jodi is very talented and is the person I swap family photography with every year. (She takes pictures of our family, and I take pictures of her family.) We talk about ideas for photography and she encourages me to go manual with my camera (something she is already great at, while I am stuck on auto and lots of editing! Jodi…you will be happy to know that I signed up for an 8 week online manual class and I am SUPER excited about it!!) Anyways, Jodi graciously agreed to be on my team for Race for the Cure and is going to be my personal photographer for the race. Yay! I know it will be a wonderful day filled with thousands of people, a few tears, many smiles and lots of PINK! J

Here is a link to Jodi’s Photography on Facebook:

https://www.facebook.com/pages/Jodi-Addy-Photography/254703411216376

My other photographer friend, who so graciously offered to help me document my journey, is Tina, who I have known for at least 10 years. We started as Creative Memories Consultants together, but I have *always* been inspired by Tina’s love for photography, her flare and her outlook on life in general. Tina is the person that I referred to earlier in my blog when I talked about focusing on a word for the year. (Perspective is my word.)

I admire Tina on so many levels. I consider her a mentor and I always look forward to reading her blog…it is full of creativity, depth, heart and of course: perspective. She has donated her time to being a photographer for Now I Lay Me Down to Sleep (an organization pairing photographers with parents who want to document their newborn babies before they pass on) and The Gold Hope Project (an organization pairing photographers with children with cancer).

Tina has agreed to help me capture my journey in raw form….before surgery, possibly during surgery, and after surgery. I am a *tad bit* apprehensive about being the subject of such raw photos, but I know that Tina has worked in hospital settings and with touching situations before. I totally trust her with all of my sensitivities and insecurities.

You can check out Tina’s blog and photography site here:

http://www.tinavegaphotography.com/

And her Facebook page here:

https://www.facebook.com/#!/pages/Tina-Vega-Photography/49334773100

And last, but not least. I want to make a video!! (I know, I know…I want, I want! *smile*) There are so many cool videos to fun songs…I want to do this too! My friend Joe from volleyball is an aspiring movie producer and we are in the beginning stages of coming up with some cool ideas to maybe do this! How FUN!! Would love to hear your ideas for fun songs to use if you have any…

Ok…I have written A LOT already…I suppose I should wrap it up for today!

Quick note about how I am feeling. Last week was a tired/nauseous kind of week, so I wasn’t up to writing much. This week, I feel good and the best news….NO HIVES!!! WOOT WOOT!! I can’t tell you how relieved I am about this! You don’t realize how nice it is to not have itchy skin, until you have been through a severe case of hives! Happy to have somewhat normal/dry skin this week! Yay!

Have a great week everyone and thanks for reading!

Love to all…

Nae

Goodbye HIVES!

After the initial 5 day dose of steroids wore off (around Wednesday of last week), I started to get itchy again. *pout* The hives never really went away, they just became tolerable during the treatment. So when my steroid pack ran out and I could tell they weren't gone...I called my oncology nurse AGAIN (I am sure she was just as thrilled as I was to have me on the phone *smile*). I told her I couldn't stand it anymore and the Benedryl wasn't doing anything to help.

OK she said....time to bring the BIG DOGS in. She talked to my oncologist and put me back on the heavy steroids I take when I am going to be having my big chemo days. 5 more days of steroids should do the trick. She warned me that I might not be able to sleep very well on all of the steroids...I just laughed and told her that I could handle being awake as long as I wasn't awake and ITCHY! LOL

After 10 days of steroids, I am finally only experiencing the residual effects of my nasty hives last week....bruised fingernails (yes, from scratching so much...who knew that could even happen??), small scabs on my skin where I scratched too much (I simply couldn't help it!), and excessively peely skin (if only it would have been from an exotic destination sunburn instead of hives! *smile*).

Amidst it all, was the big Arrowhead Benefit Volleyball Tournament & Raffle up in Duluth. It was a fabulous weekend and we raised lots of money for Susan G. Komen! Yay! (I don't have totals just yet because I have to hammer out my taxes this week first, but will post info and pictures about the benefit next week perhaps). My Divas did an AHHH-MAZING job donating their time and efforts toward making the benefit a HUGE success, AND we took 2nd in our division at the tournament! WOOT!! LOVE YOU GUYS SO MUCH!!!

Tomorrow is my next big chemo day. *sigh* Normally it wouldn't bother me, but I am quite apprehensive this time around. After my painful reaction the last time, I am nervous to see what awaits me this time...simply because allergic reactions can get worse with each exposure. :(

Oh well....time to battle fire with FIRE! Instead of taking 2 pills of steroids the day before my big chemo and the couple days that follow, they are loading me up with 5 pills of steroids today, 5 pills the day of, a steroid IV during chemo and MORE steroids on the days that follow...THE BIG DOGS even....HOORAY! (anyone need help moving furniture this weekend? I might be your gal...hahahaha!!) Here's hoping and PRAYING that taking steroids up front will do the trick!!

Hope you all have a Blessed Easter!!


Love to all...
Nae

HIVES, HIVES, AND MORE HIVES!!!

Oh my. Well, my second allergic reaction came on about 1 week after my last big chemo day and boy was I down for the count! The hives were more severe then the last time I had them and they made me absolutely miserable! The doctor put me on a 5 day regimen of steroids and Benedryl, but it took at least 3 days for the massive itching to subside and here I am still covered in these ugly hives as I wait for them to totally GO AWAY!

I try to be positive about things, but sometimes when you are in pain you just want to be validated that you are not being a total wuss about things. Somehow hearing “you have a right to be upset about this” makes you feel better about being upset. I am sure it is purely psychological, but whatever works, right? J  (I am going to post some pictures below of the dreadful hives to just give you a snapshot of what I am talking about. You know….to back up my complaints and to encourage validation. *smile*)

 



For those of you that have never had hives….be GRATEFUL! When you have them, you have this intense urge to just scratch and scratch and SCRATCH. It’s this delicate balance between scratching them hard enough that it makes you feel better, but not TOO hard so that you damage your skin and cause more pain. I have to tell you, I kind of felt like a little kid with chicken pox…I wasn’t supposed to scratch, but I just couldn’t stop!

I have been sitting in the house for the past 4 days, missing a game day with dear friends, the Women’s State Volleyball Tournament and the first night of playoffs last night. I HATE to miss out!

I called my oncologist today and she said that the hives could linger for a while, but as long as they don’t get any worse I should be ok. I asked her if playing volleyball tonight would be bad for them and she said they might flare up a little with heat, but that I could take a cool shower afterwards and they should get better later in the evening.

Other then being a little apprehensive to go out in public looking somewhat dreadful, I am so excited to get out of the house! Hopefully I can put my self-consciousness aside and just not care what others think of my appearance. That’s how life is supposed to work right? Easier said then done. J  I am sure I will go out of my way to make sure people know I am not contagious, and as long as they know that, I guess I shouldn’t care what they think of my splotchy red skin.  (if only I could have learned that lesson in my younger school days!)

I read a quote in the newspaper a couple months back and although I don’t have the exact wording or author handy, it went something like this:

“Life might not always be wrapped with a bow, but it is always a gift.”

Again…it’s all about perspective.  With that, I would like to leave you with a more pleasant picture to end this blog entry. J I bought a fun new scarf and earrings a week ago with some money that I earned from consigning a few of the clothes that belonged to my dear mom. They make me smile, so I thought I would share…

Love to all…

Nae

A plan in place...

Last week was an insanely busy week! Snow day, multiple doctor’s appointments, conferences, a day at the museum with the kids, my big chemo day, 2 volleyball tournaments, a benefit dinner AND we lost an hour of sleep. I don’t like to give up sleep normally, but this past weekend, I really missed it! J  Needless to say, I am BEAT! I think it is all catching up with me, so I have been nestled on the couch the past few days trying to recoup.

I have a lot of info to share, so I should probably just jump right in and start…

It has been quite the challenge to try to coordinate all of the doctors and moving pieces with my journey. What comes first? How long does that last? Who will do that? Will it interfere with that? What are my options? Depending on who you ask, the answers can vary…which can make planning a little tricky at times. J

Several times I have wished that all of the doctors could be in one room at a time so that I can just get a plan in place, instead of bouncing back and forth between each one (oncologist, surgeon, radiation oncologist, plastic surgeon, etc.). After numerous appointments however, I think we have it figured out.

My last big round of chemo is scheduled for April 19^th. I will still have weekly doses of Herceptin, following this big dose, but this shouldn’t impact the date of my surgery in any way. As long as my big chemo dates go as planned, and my white count remains intact, this will be my schedule:

-       May 12^th Race for the Cure Mother’s Day Walk with my wonderful family & friends! J

-       May 14^th Surgery scheduled for double mastectomy and lymph node removal.

-       End of June….Radiation scheduled for 33 days of Monday-Friday treatments.

-       Beginning of September…Reconstruction surgery scheduled.

Originally, we were planning to do the mastectomy and reconstruction at the same time, but with the timing of everything, we decided to go a different route. The radiation needs to be started within 4-6 weeks after surgery, and the plastic surgeon didn’t think that she would be able to do the breast expansion within that time frame (and they don’t recommend doing the expansion of the skin after radiation). We opted to wait on the reconstruction until after the radiation was complete.

After weighing my options, I decided on doing a “TRAM” surgery in September. Instead of having expanders and implants, they will use skin, fat, and muscle from my abdomen to complete the reconstruction. In essence, it is a double surgery of sorts, but who can argue with getting a small tummy tuck out of the deal, right?? J I am especially excited about the idea of having some of the excess skin on my tummy taken care of. You know, that skin that one inevitably gets when pregnant with twins?? The skin that will NOT go away no matter how much you work out?? J That is DEFINITELY one of the “bright sides” to doing a surgery of this kind. Recovery time will probably not be the smoothest (since I will have 2 locations to heal), but in the end, I think it is the best choice for me.

Other news….or should I say GREAT news?? I received my genetic test results back. BRCA1 and BRCA2 tests came back negative!! Hooray! What this means….I am not at a higher risk for ovarian cancer and I will not need to have my kids tested for the gene when they get older! J

Ok….I think I have talked your ear off enough for today…thank you for taking the time to follow me through this all!

Love to all…

Nae