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

Benefit Info and other updates...

Just a few updates to fill you all in...

I have not heard back yet from genetic testing, but will let you all know as soon as I know more. Cobra goofed in confirming with Blue Cross that we were covered for insurance for the second half of January, so that pushed my test out until they could sort it all out. Thank goodness it was THEIR fault and not mine. ;)

This week I have a number of appointments....Tuesday I meet with my radiation oncologist to discuss our plan for radiation following surgery, Wednesday morning I meet with my plastic surgeon to discuss reconstruction details after my double mastectomy, Wednesday afternoon I have a check in with my regular oncologist, and Friday finishes the week off with my fourth BIG chemo session.

Other things that are going on...

Every year the MN Volleyball Association runs a benefit tournament up in Duluth. This year the tournament proceeds are being donated to Susan G. Komen Breast Cancer Foundation in my honor. :) We are selling t-shirts and raffle tickets and you can purchase either item at www.mnvba.com (click on the "Arrowhead Central" tab for more information). Below is a picture of the shirts...they are $12.00 (my favorite number!).

Raffle tickets are only $1 or 7 for $5.00 and they we have AWESOME prizes this year!! (iPad2, iPad Mini, iPod Nano, 1 week stay at Bay View Lodge, signed MN Vikings Percy Harvin Jersey and MANY other prizes!!) Drawing will be held on March 22nd at Grandma's Sports Garden in Duluth, but you do NOT need to be present to win!

(A huge thank you to Shari Perkins for designing the cool Arrowhead shirt below!)

 

Hope you are staying warm and safe in this snowy weather we are having! Have a great week!

 

Love, Nae

A Day with Nae! Race For The Cure...

Join me for the Twin Cities “Race for the Cure” on Mother’s Day, May 12, 2013!!

My family and I will be doing the 5K Walk (3.1 miles) and we would LOVE for you to join our team! J The Race will be held outside the Mall of America and it is a wonderful experience for a great cause!

Our team name is called “Nae’s Way” (in honor of the current “detour” I am taking). You can register to walk with us at the following Web site:

www.komenminnesota.org

Once you get to the site, you will need to click on the tab that says “Komen Race For The Cure” and then “Register”. You can register online or by mailing your forms in. Make sure you register as a team participant, not as an individual. (You will need to select team “Nae’s Way” from a dropdown list of teams.)

Here are a few of the basics…

 
-       With your registration fee you receive a t-shirt, race bib, wristband and Race Day refreshments.

-       Adults and kids can walk. Strollers are ok for the walk, but all participants (even babies) must be registered.
 
-       If you register before March 7^th, you can get a discount (Adults $25, Kids $12). If you register between March 8^th and April 18^th it’s $30 for adults and $15 for kids. After April 19^th and the fee goes up to $35 for adults and $17 for kids.

-       The team captain is responsible for picking up the team packet of shirts and materials, so I will be taking care of this and will organize a meeting time and place for us the day of the race.

-       The race starts at 9:00 a.m., but we will meet earlier (probably 7:30 or 8:00 somewhere). They also have a Health Expo from 7-10 with free stuff and refreshments.

 

Team Shirts???

Just a little backdrop….the Minnesota Volleyball Association hosts a tournament every year up in Duluth called Arrowhead. It is a benefit tournament and this year it is going to be held in my honor.

We are selling t-shirts and raffle tickets for the tournament and ALL of the proceeds will go to Susan G. Komen Breast Cancer Foundation in my name. (our own little way of fundraising *smile*) The t-shirts are black with a pink ribbon and a volleyball on them and they are super cute!

I thought it might be fun to have my “Race for the Cure” team wear these Arrowhead shirts for the walk (if they want to). They are $12.00 and I will be posting ordering information both on my blog and on Facebook if you are interested in ordering one.

I think it would be fun for my team to have matching shirts, but it is certainly not required by any means. In fact, we can have a mixture of matching Arrowhead t-shirts and Race For the Cure t-shirts (free with your registration), so whatever you choose to wear is fine by me! I will just be honored to have people walking with me! J

Care to join us??? J

Sorry it has taken me a while to sit down and update my blog. I have been busy. Well, kind of. If you consider “resting” A LOT to be busy, then yes….I have been VERY busy! J Last Friday I had my 3^rd big round of chemo, and much like my 1^st round, I have been feeling quite tired and nauseous afterwards.

 Following my chemo treatment, I was fortunate to be able to spend a lovely weekend with some of my dearest college friends at a cabin up north. They spoiled me by going out of their way to pick me up for the weekend and letting me just relax and nap whenever I needed to. It was a restful weekend full of great friends and a lot of much needed laughter and support! I even snuck in my first Wild game of the season on my way home on Sunday! (They WON by the way…and I just love it when they sound the foghorn after scoring….it reminds me of back home in Duluth. J)

 After my weekend away, I was able to play volleyball on Monday night, but we had a double-header and my body just felt run down and plain tired! I think the chemo caught up with me and I had to skip volleyball on Tuesday night and all social activities the rest of the week. I am hoping that all of my resting this week will pay off though, because I am supposed to play in a volleyball tournament with some of my Divas tomorrow. I can’t wait to get back out on the court!!

 
I spoke with my Oncologist last week, and asked her some more questions about the timing of surgery and next steps after chemo. I had originally thought that I would have surgery in June or July, but she made it sound like she wants me to have surgery right away in May to prevent any of the tumors from growing back. (On a side note…I would really like to organize a team to walk with me on Mother’s Day for the Race for the Cure, so I am hoping that I can work surgery in the week after the race, but we shall see!)

 
Aaron and I met with the surgeon that will perform the double mastectomy this week, we will meet with a radiation oncologist next week, and then we need to schedule an appointment with a plastic surgeon before I will know specific timing. For now, I am guessing my surgery will be sometime in May, but I will keep you all posted on the specifics once I know more.

Have a wonderful weekend!

Love to all,

Nae