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Capsular Contracture 

2/29/2016

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It's been 2 years, one month and 20 days since I had my double mastectomy. Life is good. Things are back to normal… or rather the 'after cancer new normal' as many survivors would say. I have moved past my anger for having had to go through chemo and radiation and am mentally myself again - taking on many new challenges.  But today I was offered a little reminder that although my life is pretty close to what it once was (even my hair is only about 2 or 3 inches short of being back to pre-chemo length), the effects due to the big C will never be far from the forefront.

I had a doctor appointment this morning with my reconstruction surgeon to talk about the pain and tightness in my right breast. It hurts all the time and I can't sleep on my right side.  It sits on my chest differently than the left one, but I figured that was due to the radiation - which forever shrunk, shriveled and screwed up my skin in that area.  Well, apparently, I have what is called capsular contracture.
 
“The main long term problem after implant surgery is that a fibrous capsule may form around the implant. Although silicone is safe, it is still foreign to the body. The normal reaction of the body to any foreign tissue is to form a fibrous covering around it. The fibrous covering is known as a capsule.
 
Over some years, the capsule can shrink, squeezing the implant. Doctors call this capsular contracture. It happens in about 1 in 6 patients. It makes the breast painful and hard, and changes its shape. If the shape changes a lot, you may have to have the implant taken out and replaced.”
 
“Capsular contracture: Once a breast implant is in place, scar tissue forms around it, creating what's called a tissue capsule. These tissue capsules usually are soft or slightly firm and not noticeable. But in a small number of women, a hard tissue capsule forms that can be painful and distort the shape of the breast. This is called capsular contracture.
 
Research has shown that implants with a textured surface can help reduce the risk of capsular contracture compared to implants with a smooth surface.
 
Radiation therapy given after reconstruction surgery can increase the risk of a scar tissue capsule forming.
 
If capsular contracture does happen, a surgeon can break up the scar tissue and replace the implant if necessary.”

 
So, as suggested by my doctor, another surgery is in my future. He said that it will only get worse over time so replacing the implants necessary. 
 
Now where am I going to find the time to put a surgery and recovery on my calendar?

As always, if you've had any experience with something like this, comments are appreciated! Thanks.

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Words Matter - Say them Hear them Feel them

1/15/2016

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PictureJan 2016
Words really do matter. And some of the best words came for me at a most unexpected time.
 
Last week, I attended a wake for someone I barely knew. He had been a bartender at a lounge that my better half and I frequent often. Ok, not as often as we used to, or as often as we would like to, but often enough.  Needless to say, I went to pay my respects and though I didn’t know him well, I knew him enough to know that when tragedy strikes our community, we stand together. Even if we are standing in a viewing line at the funeral parlor.
 
Though the atmosphere was somber and it was quite heartbreaking to see so many faces grieving and in pain, I am thankful that I was able to offer a few hugs to some friends I hadn’t seen in a while. One of those hugs went to my friend Duke.
 
With a tear in his eye, we quickly hugged, then he looked at me, rolled his eyes around my hair, turned to my girlfriend and said “she’s back.”
 
You may shake your head and think “ok, that means a whole lot of nothing.” But these two simple words gave me the greatest gift. What he said was something I’ve needed to hear for over 2 years but not sure those words would ever come.
 
It has been drilled into my head that I need to learn to accept the “new me” or the “new normal” as stated in so many cancer blogs. I know I’ve said this many times in the past, that I wasn’t particularly happy being the old me but I never stopped wanting her back.  I grieved the death of the old me. I spent months in therapy trying to grasp how to be this “new me.” A few months ago I wasn’t even capable of going on a job interview because I had such little self esteem that I couldn’t get myself to feel worthy of any position. All of this because I didn’t feel like me. The me that I had been for 40 years. I felt like a shell of me.
 
Recently, I have felt like me. The real me. The old me. And thanks to Duke, I finally have confirmation that I’m not dreaming. I really am BACK!
 
So, this just proves that you can do ANYTHING you set your mind to! You can fight your way into remission and when they tell you that nothing will ever be as it was – you can call BULLSHIT! 

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Making Strides Against Breast Cancer – 20 Years and a Wall of Hope

10/22/2015

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​Making Strides Against Breast Cancer – 20 Years and a Wall of Hope
 
The annual American Cancer Society breast cancer event was held on October 18, 2015 this year and it was bitter cold out! My toes were frozen at last year’s event but this year every phalange was chilled to the bone.

Cold or not, there are several reasons that I was determined to go, so with Mom in tow we headed downtown. Being the 20th anniversary, I knew the event would bring a nice crowd full of pink and that it did! I thrive around pink supporters and survivors – the more the better and this is one of the reasons I didn’t want to miss this event. Another reason is that I suspected I would run into several friends, which I did and I knew I could count on them for lots of hugs!
​Because of the anniversary this year, the organization honored survivors with a wall of hope and I was thrilled to take part and sign my name on the poster that hung with my story in the survivor tent.
 
All the wall of hope survivors cut the ribbon at the start of the walk.
Sadly, because I still have torn ligaments and a sprained ankle from my Susan G. Komen 3day walk in the beginning of the month, I wasn’t able to walk with the group but my daughter and her girlfriend Jaelyn walked in my honor. #EartoEarSmiles

So happy that I didn't sit home in my PJ's on this cold morning and miss all the fun! Ted & Amy from 93Q were there this year, along with my friends from PBJ's Lunchbox Food truck and Toss N Fire Pizza!​
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2015 Philadelphia Susan G. Komen 3Day Recap

10/7/2015

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The 2015 Susan G. Komen 3Day in Philadelphia, PA 

A recap from a first timer.

October 2-4, 2015
Philadelphia, PA
60 miles. 3 days.

#PHL3Day #The3Day

In early 2015 while browsing my social channels, I came across a video of the Susan G. Komen 3day walk that had me in tears within seconds. I watched this short clip and was so inspired that even though I had never heard of this 3day event before, I quickly made a plan to attend.
 
By March of 2015, I had my fundraising plan of attack and was determined to raise at least the minimum of $2300.00 each for both myself and Lucia.  My battle buddy hasn’t missed a single cancer event since this journey started for us in October 2013 when I was diagnosed so there’s no way I would consider walking without her!
 
Fundraising proved to be a difficult task but so many kind people gave their dollars generously and just 1 week before the deadline, we reached the goal.
COSTS TO PARTICIPATE:
Raise funds for Komen (minimum) = $4600.00
Hotel Thursday and Sunday night = $440.00
Gas to drive to Philly and back = $100
Fleet feet sneakers and socks = $305.00
Pink attire = $140.00
Misc items (duct tape/hand warmers/blister meds/etc) = $50.00
TOTAL for 2 people: $5,635.00
 
We raised the money, purchased the necessary items, borrowed what we didn’t have, packed everything tightly inside individual ziplock bags to keep safe from rain, and headed to Philly.

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2015 Carol M. Baldwin Breast Cancer Golf Tournament at Turning Stone

9/20/2015

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PictureShelly Straub, Carol M. Baldwin, Kim Sacco
2015 Carol M. Baldwin Breast Cancer Golf Tournament

This year's breast cancer golf tournament was held on Sunday, September 20th and unlike last year, which brought thunder and lightening, we enjoyed blue skies and sunshine, although a bit brisk at 8:45 am.

Lucia and I didn't plan to attend the charity golf tournament this year because we're saving every penny for our 3day/60 mile Susan G. Komen walk in 2 weeks...  But as fate would have it, our friend Kim Sacco who, as a first year survivor was invited to golf for free, asked us to come with!

Again this year, I didn't swing the club even once... my right arm won't allow it. (thank you breast cancer). But we still had a ball and laughed alot! The best part was being able to join this year's event... WITH HAIR! Last year was my first time attending and I was just growing my hair back after the chemo. It was uncomfortable and I didn't feel like myself. This year - I felt like me!

Thanks Kim for a great day!

Click here to see the 2014 Baldwin Golf outing post and pics.

2015 vs 2014...  Hair vs no hair!
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Beth Baldwin & Shelly 2015
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Shelly & Amy 2014
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Beth Baldwin & Shelly 2014
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Shelly & Lucia 2015

Photos from this year's event:
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Compilation of cancer songs

9/6/2015

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Here is a compilation of cancer songs - they will all make you cry.  If I missed any, please comment below so I can add them. Thanks!
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Click for a facebook video of Kelly Clarkson's STRONGER song
Martina McBride - "I'm Gonna Love You" - this video published in 2011.
Jimmy Charles - "Superman" - released Sept 2015
Baldwin Foundation video featuring Rachel Platten's "Fight Song" - released 2015
Sara Bareilles - "Brave" - released when I got diagnosed in 2013 - this is MY song!
Mandisa - "Overcomer" - released 2013
Kim Guynn - "Dressed All In Pink" - released 2012
Gloria Gaynor - I Will Survivor - a video by PinkWell.org in 2011
Matchbox 20 - "3am" - and you thought this was a breakup song... Rob explains - watch the video.
My Chemical Romance - "Cancer" - This song is a bit dark for my taste.
Jamie Grace - "Fighter" - released 2013
Brantley Gilbert - "One Hell of an Amen" - released 2015
Melissa Etheridge - "I Run for Life" - released after she went through breast cancer!
Dominic Camany - "Hold On" - released 2011
Tim McGraw - "Live Like You Were Dying" - video published 2013
Capri Ruberto Anderson (12 yrs old) - "Hope" - released 2013
Rascal Flatts - "I Won't Let You Go" - released 2011
Kal Haurd - "When Pink Is Just a Color Again" - released 2008
Zach Sobiech - "Clouds" - released 2012 - cancer took his life in 2013
Soldiers - "Otherwise" - also a very dark song, not really for me
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2016 Badass BBQ for Breast Cancer

9/6/2015

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Planning is underway for the 2016 #BadassBBQ for breast cancer!

Join us on August 21st, 2015 for a #badassbbq for breast cancer! This FREE event will showcase live music, craft vendors, auctions, games, food trucks from the Syracuse Food Truck Association and a BBQ competition!  Stop down to Longbranch Park between 1-4pm and be part of raising funds for the cause because "what's a good BBQ without a great rack?"
For the most up-to-date information on the #badassbbq during the planning phase, head on over to our facebook page! www.facebook.com/badassbbqforbreastcancer

For information on last year's #BadassBBQ for Breast Cancer, click here. 
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2016 Breast Cancer Calendars ARE HERE!

9/5/2015

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2016 Breast Cancer Calendars for sale!

As part of our fundraising for the Komen 3day walk coming up in October, we are selling these 2016 calendars, designed by Shelly.

All calendars are printed on the highest quality cardstock paper and bound with a sturdy spiral binding. Click any photo to browse the monthly selections.
Calendars are $25 each. SOLD OUT
Please add $3.95 for shipping - or you can pick it up if you live near the Cicero, NY area.

We thank you so much for your support!
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Cancer in Central New York - The Scrapbook

8/2/2015

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Cancer in Central New York

These pages contain the faces of those touched by cancer and the messages of hope from the community that gives us strength.

The book is updated regularly so check back often.

If you have been diagnosed with cancer and live or have lived in the Central New York area, feel free to contact Shelly to be included in the book.

If you are in the Central New York area and are having a benefit and would like to borrow the physical book for your event, feel free to email Shelly shelly.straub@outlook.com

Click here to view the publication on the digital publishing platform ISSUU.

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SCREW SAVING THE BOOBIES!

7/9/2015

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PicturePhoto courtesy Storybook Photography
Screw saving the boobies! My mission is to save the hair!

I was diagnosed in October 2013 and now, in July of 2015 I have finally realized why my breast cancer story matters.  I am not on a mission to "find a cure" because that's just too big of a task for little 'ole me. My simple mission is to promote EARLY DETECTION!!  1 in 8 women will get breast cancer. That is just a fact, plain and simple. There is no way of knowing if any cure will be found in my lifetime, but if you are the "1" in 8 that will get this disease, I can only hope that you found it early enough to avoid some of cancer's wrath, which comes from trying to treat it.

I was 40 years old when diagnosed in 2013.  My cousin Kelly was 44 years old when she was diagnosed in 2015.  We both have estrogen positive breast cancer. We both had a double mastectomy followed by reconstruction. Kelly found her cancer soon enough and thankfully avoided having to go through chemotherapy and radiation. For myself, part of my story includes noticing changes to one of my breasts but not realizing it could possibly be cancer and therefore allowing that tumor to grow for "at least" a year before I got checked. Sadly, my cancer grew and traveled to nearby lymph nodes, which paved way for my chemo and radiation treatment.  What angers me about this is that it could have been avoided! Had I been checked when I first noticed changes or had I done self breast exams, I would still have been diagnosed BUT maybe I would not have had to go through the worst possible year of my life, which included the chemo and radiation.

PicturePhoto courtesy Storybook Photography
Typically, when someone goes for a mammogram and they find an abnormality, the next step would be ultrasound and biopsy.  Adding in the time it takes for results, this process can take somewhere around 2 weeks - +/-.  The same day I walked in for my first mammogram ever, I was told I had breast cancer. The nurses and doctors knew right away, even without biopsy results, but I HAD NO IDEA. How many other women also HAVE NO IDEA?

This week, I went to my first Survivorship Program doctor appointment at Upstate Cancer Center.  The nurses reviewed my file with me and then we had a long discussion about all the long term effects and possible problems I should watch out for in the future - not due to my cancer, but due to the treatment of my cancer - the chemo and the radiation.

I think I have finally stumbled upon the root of my anger.  I am so angry with myself for not paying attention to the signs of breast cancer right in front of my face!  For me, anger is a great motivator. I am on a mission. YES, EARLY DETECTION CAN SAVE YOUR LIFE, BUT IT CAN ALSO SAVE YOUR HAIR! (Among other things.)

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I prefer not to be defined by cancer, but my life has certainly changed because of it.
Today, the simplicity of life and small moments of joy is what drives me.
Thanks for following my journey!