Well hello again!

Where does the time go? A lot has happened in the past month or two and I am behind on keeping you in the loop. ;) My apologies, but I am sure you understand. I last wrote about my double mastectomy and the days that followed. (This was back in May, which seems so very long ago already!)


After a little bit of a rough go at it with surgery in May, I was happy to have June bring some sunshine my way. I started the month with getting fitted for my prosthesis (translation: I got two new bras that had mesh pockets that you can slide silicon prosthesis into). They aren’t “real” and they aren’t “mine”, but they make me feel comfortable and more confident then I have in a long time. I think they look very natural and I am reassured by this every time someone gives me a confused look when I tell them I had a double mastectomy and they look at my chest. It’s a little AWKWARD, but I am thankful that people don’t “know” that they are fake, unless I tell them. J

So what is it like to not have a chest anymore? To be honest, it’s kind of weird. I don’t have a lot of sensation where they stitched me up (the nerves take a while to come back) and there is also somewhat of an indent where my breasts used to be, which is kind of crazy to think about, but I know that it is just temporary, so I try to roll with it.

It was a little over a month before I got to step out onto the volleyball court again (my first time in the sand). As most volleyball players know…your timing in the sand is quite different then indoors on a hard court. The sand provides somewhat of a challenge to run around in and jump out of, but one thing I hadn’t thought of was that my center of gravity had also changed. Anyone want to guess what part of my body hit the ground after my first initial jump in the sand?? My feet touched the ground first, but my balance landed me right on my butt! HA! I felt a little clumsy, but I quickly realized that the weight distribution of my body was just different and I needed to adjust. (I do not wear my prosthesis when I play volleyball.) It was a little bit of a learning experience for me, but I think I have it figured out for now… J

It was great to be able to get fit for my prosthesis, but my favorite part of June was that Aaron and I were able to take a wonderful trip to Ireland together! Two of our volleyball friends were scheduled to get married in a castle in Ireland and I made sure to do EVERYTHING in my power to arrange and rearrange my doctor’s appointments, surgery and radiation, so we could fit this trip in. J I wasn’t sure it was going to work, but I am SO thankful that it did! I think it was just what the doctor ordered at the halfway point in my cancer treatments-----chemo…CHECK, double mastectomy…CHECK...time for a trip before radiation and another surgery CHECK!!

Not only did we get to go to a wedding in a castle, but we got to spend time with a lot of wonderful friends and reconnect with each other after a rough 6 months of dealing with cancer. I feel very blessed that we were able to enjoy this time together and the only “side effects” I really encountered were some seriously swollen ankles on the trip, and I really can’t complain about that at all. J I was so excited to not have any restrictions while we were there, and my taste buds had returned to normal after chemo, so I was able to enjoy the food, the cider and the ice cream! Hooray!! Here are a few pictures from our trip… (you can click on each individual collage to see them up close.)

 

 

More info on radiation in my next entry…thanks for following along!

Love to all,

Nae

The week after surgery...

In the days that followed my surgery I slept A LOT. I juggled medications for pain along with my regular medications each day as I camped out in the recliner chair trying to heal. And even though it wasn’t the most pleasant task, Aaron graciously emptied my drainage tubes every morning and every night for about a week. Life seemed fine after surgery and I wasn’t experiencing any really serious complications….until I decided to get dressed up to go out one night.

Now it wasn’t that I *wanted* to get dressed up to go out (I had been comfortable just lounging around the house in my comfy pants and my surgical camisole), but it was our book club night and we had a special guest lined up. One of our book club members had entered a contest online and had won! National Best Selling Author, Jane Porter, was flying to MN to take our book club out to dinner! I had read two of her books and I really didn’t want to miss it. I was looking forward to getting out of the house for the first time since surgery, but the “dressing up” part had me in tears. L

I struggled to find a shirt that fit the way that I wanted it to. It needed to be big enough to fit all three of my drainage tubes and bulbs underneath, but I didn’t want to look like a big circus tent in the process! After painfully trying on multiple shirts (raising my arms above my head was a difficult task at the time), I decided there was no getting around it….I was just not going to be happy with whatever shirt I selected.

Looking at myself in the mirror, I had tears streaming down my face. Getting dressed up did not have that same “feel good” feeling anymore. I was bald, overweight, had ugly, discolored fingernails, and my shirt had voids where it shouldn’t have had any. Aaron saw the pain in my face and greeted me with a warm hug and reassuring words that only he could give.  

I *NEVER* thought that it would be this difficult! When I first got my diagnosis I was more upset about losing my hair then losing anything else, but now that I had lost both my chest and my hair I felt sad. I didn’t feel feminine at all and that was really hard to swallow. As hard and as painful as that was for me, I knew that it was only temporary, so I took a deep breath and went downstairs to wait for my ride.

I was very thankful my friend Angie offered to pick me up for book club that night. She had been through a similar medical journey and had constantly been there for me, offering a listening ear and many words of support along the way. Her support continued that night as the floodgates opened and I tearfully told her how I was feeling. She validated my feelings and offered encouragement as I tried to prepare myself to go out into the public eye.

Thankfully the rest of the evening was lovely…good food, good conversation….it was just what I needed!
 
The following day, my friend Steph spent the day running around to different doctors appointments with me. She held my hand when the surgeon removed my drainage tubes, she took notes when I talked with my oncologist and sat with me during my Herceptin treatment. I was blessed to have her there with me and appreciated the support she provided.

It was the first time I had met with my oncologist after surgery and I really wanted to talk more in depth with her about this notion of being “cancer free”. It was a light-hearted appointment and we shared many laughs and hugs along the way. She told me that they rarely have this kind of response to chemotherapy treatments and she was extremely pleased. I asked her what this meant moving forward and she said that I would need to come in for check-ups on a regular basis and that I should let her know if I detect any weird lumps, bumps or pain along the way. She also prescribed a new drug for me to take called Tamoxifen. What is Tamoxifen? Best way for me to describe it is to copy text straight off of WebMD:

Tamoxifen is the most commonly used hormone therapy for the treatment of breast cancer.

Many women have breast cancer that tests positive for estrogen receptors (ER+). This means that estrogen promotes the growth of the breast cancer cells. Tamoxifen blocks the effects of estrogen on these cells. It is often called an "anti-estrogen."

Tamoxifen slows or stops the growth of cancer cells that are already present in the body. It helps keep the original breast cancer from coming back and helps prevent new cancer in the opposite breast.

I will take Tamoxifen daily for the next 5-10 years and the possible side effects include….stroke, blood clots and hot flashes. Here’s hoping the side effects for this drug stay far, far away from me!

That’s enough for today….thanks for following along.  More blog entries to come regarding my radiation therapy, etc…

Enjoy your Fourth of July holiday!

Love to all…

Nae

Details of surgery...better late then never!

I am little behind. Ok A LOT behind. I am one of those people that has the best of intentions, but not always the best follow through; especially when life gets BUSY. And let’s be honest….when is life NOT busy with 3 kids in school, sports and other activities? The problem with having good intentions however, is that people have no idea what you are “thinking of doing” or “planning to do”; they just know what you actually “DO”.

So if I am not able to actually “do” something, I should at least talk about it, right? That way people know that I “mean” to do it…I just don’t know when I will actually “get” to doing it. *smile*

The chronological side of me really wants to post blog entries in the order they happen, but the realistic side of me knows that if I wait to do that, then I might not be able to post for a while, and I really want to give you all the latest on how things are going. So I am going to go ahead with an update about how surgery went, but will probably circle back at another time to talk about and share Race for the Cure pictures and other things I may have missed along the way.

Here goes…

My surgery was on Tuesday, May 14^th. I arrived at the hospital around 5:45 a.m. to start the registration process. I was a little nervous, but happy to have Aaron right by my side to reassure me along the way. I knew that it was probably a routine surgery, but as with any surgery, there is always a small chance that something could go wrong. I guess that small percentage entitles me to worry at least a little bit anyways, right?   

Luckily I didn’t have a lot of time to sit and worry. The morning actually went by pretty quickly. I got to change into one of those flattering gowns that doesn’t close all the way. I answered a lot of questions. They took my vitals. I had to put on a silly hat that seemed way too big for me (not sure why since I have no hair, but I am sure I looked lovely…it was a cross between a lunch lady hat and something that resembled Bozo the clown J).

My photographer friend Tina got up bright and early to come to the hospital to document this chapter in my journey. (Thank you my dear!)  I know that it’s probably not a common thing to bring one’s photographer along to the hospital (unless one is going to have a baby), but I wanted her there to capture this…regardless of how painful or hard it might be, it is part of my journey and I wanted to record it.

Before going into surgery they gave me an IV and my 2 surgeons came in to my pre-op room. 1 surgeon would be doing the double mastectomy and lymph node removal and the other surgeon was scheduled to do reconstruction surgery later in September. They conferred on what would be the best area to remove and what they should try to keep for reconstruction later. My chest area became a canvas of sorts as they drew on me with a purple marker.

Shortly after that, I remember lying down in my pre-op bed. To be honest…the rest is a total blur. I don’t even remember entering the surgical room, which is very different from any of the other surgeries I have had before. From there, the surgery took an hour or two, and then I spent some time in recovery before they wheeled me to my hospital room.

My 1^st nurse was wonderful. She made sure I was propped with pillows where necessary and made me feel comfortable in general. (I am SO thankful for nurses that are nurturing and offer to help instead of waiting for you to ask! I am NOT a fan, however, of the nurses that are all business and tend to be huge task masters….thankfully I had only 1 of those during my stay!)

My surgery required me to spend at least one night in the hospital, but I was experiencing A LOT of pain on my left side, so I ended up staying two. I had 3 drainage tubes inserted into my chest area. 1 on the right side, and 2 on the left side. (Tubes are inserted into surgical areas to help keep your swelling down, and the drainage bulbs need to be emptied and  measured a couple of times a day to track your healing process.)  

I expected to be extremely sore throughout my chest area, but I really only had serious pain on my left side (where they removed 13 lymph nodes). I am sure the pain was due to the extensiveness of the surgery on that side and the doctor also thought that one of the drainage tubes might be sitting on one of my nerves (hence the excessive tears and yelps whenever they moved that one specific tube…OUCH!). Luckily, I had pain meds that were helpful in easing my pain so I could rest easy.
 
Aaron was a trooper and spent BOTH nights in the hospital room in one of those uncomfortable recliner chairs. I told him he didn’t have to stay, but I was very thankful to have him there with me. I even had a couple of dear friends stop by to spend time with me. (Thank you Mon and Kari….I enjoyed visiting with you very much!)

How did the surgery go? Well….the surgeon originally told Aaron that it went like he had expected it would, which is good. What’s even BETTER though, is that the pathology reports of the tissue and lymph nodes that were removed did NOT SHOW ANY CANCER!!! HOORAY!!!!! 

I was surprised to hear him utter the words “cancer free”. What? Did I just hear what I think I heard? As wonderful as that sounds, I found it hard to process this. It was an unexpected statement and I wasn’t positive if he knew FOR SURE that I was cancer free, so I embraced it with a sense of “cautious optimism”. I wanted to talk to my oncologist on a deeper level to figure out what that really meant.

In the meantime, I was content to collect my things and head home to rest some more. They sent me home with pain meds and directions on how to empty my drainage tubes twice a day. Luckily, someone had recommended that I purchase a special camisole before going into surgery. It zipped in the front and it had two velcro pockets to hold the drainage bulbs in place. (If you know someone having this kind of surgery, I would HIGHLY recommend them getting 2 of these after surgery. One to wear, while the other one is in the laundry. J )

Below are some pictures that my photographer friend, Tina Vega, captured at the hospital the day of my surgery. (You can click on them to enlarge the pictures.)

 

 

I am working at getting caught up on my blog entries….hoping to update you more within the week! Thanks for being patient with my sporadic-ness. *smile*

Love to all!

Nae

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