Tag Archives: Cancer

FoobieFitness.com

You’ve seen me mention the amazing Casey Eischen and her post-mastectomy exercise program, I’m sure. I’ve done it more than a couple of times. Foobie Fitness, which started with Casey’s YouTube channel and a community page on Facebook, recently became an official non-profit! Today Casey and her team launched FoobieFitness.com aiming to help not only women navigating breast cancer-related journeys, but anyone interested in disease prevention, nutrition, yoga, and the overall cancer-free lifestyle. Who isn’t interested in saying NOPE to cancer?!? Make sure to visit this awesome resource!

FoobieFitness.com

 

My feedback featured as a Success Story on FoobieFitness.com:

 “The Coach Casey post-mastectomy exercise program is was what really helped me make a speedy and successful recovery after my prophylactic mastectomy and tissue expander reconstruction over a year ago. I knew that my range of motion and mobility were going to be severely impacted by the traumatic procedure, so I began searching for the right program that I could begin right away and would help me in my recovery. I found just that in Casey’s videos.

I started doing wrist bends while still in my hospital bed and I slowly progressed through additional exercises in the following days. Each time I played that YouTube video I was doing better than the day before and I attribute that to this program!  I talk about and recommend it whenever the opportunity presents itself. I still do it as of the day I write this, having had additional reconstructive surgery just four weeks ago! Casey has always been positive, encouraging, and willing to offer additional advice and tips. She even created a clean and simple nutrition plan to supplement the exercise regimen. Thank you Coach Casey for helping me and countless other women get through this!” – Nope2BC.com

On a side note: I had my second fill today bringing the expander to 400ccs. I have also moved my exchange surgery out a few weeks to September 11. The story continues.

FORCE jewelry fundraiser

FacingOurRisk.orgEXCITING NEWS: I have launched yet another fun fundraiser to benefit FORCE: Facing Our Risk of Cancer Empowered!

This time I am making and selling cancer awareness themed jewelry. Started with bracelets in many different styles, sizes, and colors (not just pink and teal). Now that I have some free time on my hands while I recover, this is a great way to keep busy! Other products coming soon. I am taking custom orders too!

Jewelry banner

I am really excited about this fun project and supporting such a great organization, which has helped me and many others facing hereditary breast and ovarian cancer. These bracelets are great for previvors, survivors .. those undergoing treatment .. families and caretakers! Buy and wear (or gift) this hand made cancer awareness jewelry to show your your love, support, and warrior spirit.

Sample bracelets

I hope you love these as much as I love making them. I donate all proceeds from this fundraiser to FORCE: Facing Our Risk of Cancer Empowered (www.FacingOurRisk.org). FORCE is a nonprofit organization dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me and many of you.

Etsy logoPlease visit my Etsy shop to see more styles and place an order. Mother’s Day is coming up! These bracelets make great gifts! As I mentioned, I am taking custom orders too, so if you’d like to purchase one, but don’t see something you like. Send me a note!

P.S. Recovery update coming soon. Going to my follow up appointment later this afternoon.

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

Have you heard of the Joining FORCEs Conference coming up in June in Philadelphia? Are you planning on going? I will be there! I’m excited to attend some of the scheduled sessions, specifically those related to oophorectomy, surgical menopause, HRT, ovarian cancer screening and prevention, advancements in genetics and testing, and the show-and-tell session!!! Fingers crossed I will be completely done and healed by then, so I’m planning on showing these puppies off! Join me at the conference June 12-14 in Philadelphia.

Thoughts from FORCE

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones:

  1. It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event.
  2. We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest research and medical options understandable and accessible no matter where you are in the HBOC journey.conference1
  3. We cover every aspect of HBOC. View our agenda to see a complete list of the 48 separate lectures, workshops and networking sessions.
  4. Sessions are organized to help you find the information you most need.  Our conference content is aligned into tracks that focus on different groups.  View a list of suggested sessions based on your specific situation.
  5. We bring researchers to you.  You’ll hear the latest scientific findings presented first-hand by world-class experts

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FUCK YOU, Cancer!

As some of you already know, my mother was diagnosed with ovarian cancer in June ’12 (see an earlier post: mom’s story). She immediately began chemotherapy and had undergone 17 treatments. There were good days and bad days. In the end it didn’t work. Her struggle with this horrible disease and her suffering have ended. She died on November 5, 2013.

I can’t really fully express what I am feeling, but I know many of you understand. Sadness, devastation, fury, frustration, relief, helplessness, resignation, disbelief, emptiness, grief, anger. Right this moment it’s just RAGE. FUCK YOU, Cancer!

For those of you just joining us …

HELLOI’d like to take a minute to say welcome to new visitors and subscribers! Thanks for stopping by and checking out my blog. (I know you’re really here for the topless pics 😀 – see: My Photos)

I was recently contacted by a reporter who is writing a story about BRCA and hereditary breast and ovarian cancer (HBOC). I was more than happy to share my story, feedback, and reaction to Angelina Jolie’s New York Times op-ed. I thought adding that here is a great way to give the new readers a summary of my story, so here goes …

Recap

I’m 32, married, no kids (more: About Me). Neither I nor any of my family members carry any of the known BRCA mutations; however breast and ovarian cancer are prevalent in our family. My sister was 28 when she was diagnosed with breast cancer and died a year later. My other sister has a breast biopsy scheduled for next week. My mother is currently undergoing treatment for ovarian cancer.

I said NOPE to Breast CancerEven though I am BRCA mutation negative, I have an increased risk of developing both cancers based on my family history and was faced with the same decision regarding my breast health: choose surveillance, chemoprevention, or surgery. For the past 10 years I chose bi-annual screenings via mammograms, ultrasounds, and a few MRIs. I made a different decision and started planning for a prophylactic bilateral mastectomy when screenings discovered some issues (see: But why?) in March and then June of last year. I underwent the mastectomy in January 2013 and am currently going through the breast reconstruction process, which will end with the second surgery (see: We’re getting there) in September. I have consulted with my doctors about having my ovaries removed and will most likely be seriously considering an oophorectomy in about five years.

When I was preparing for my mastectomy, I spent many hours online looking for first-person accounts of the process and following recovery. I wanted to know every little detail related to the options and decisions I had to make: from which doctors to choose, to what type of reconstruction is available, to how to handle insurance coverage complications. I didn’t find many back then, so I started my blog, sharing my story and photos. I write my blog to give women facing HBOC insight into the experience of a prophylactic mastectomy if they choose to undergo one.

The “Jolie mastectomy”

I was immediately very excited when I read Angelina Jolie’s New York Times op-ed. I could relate to her story, as I had undergone my mastectomy just weeks before she had hers. More importantly, her name is known by millions of people around the world and now her story is too. She accomplished with one op-ed what many organizations have been striving to do for years – bring global awareness to BRCA and HBOC.

The essay described her very personal journey and reasons for making the decision she did. I echo her feeling that choosing to have a mastectomy was not easy, but I have no regrets. Although the decision to have surgery was right for me, Jolie, and countless other women, it is not the right decision for every woman and one that shouldn’t be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences. I think it’s important to note that Jolie’s experience is unique. She was fortunate enough to have a relatively complication-free recovery, but there are many women who experience severe complications following their mastectomy.

After her op-ed came the multitude of reactions, commentary, articles, blog posts. Many expressed their support of her decision, but others condemned her. Having made the same decision, it was difficult to not take it all personally. What they were saying about her and the choice she made, they were essentially saying about any woman that made the same decision. I have (thankfully) had support and encouragement from those around me.

Then came the pieces referring to BRCA as the “Angie gene” or the procedure as the “Jolie mastectomy.” I do agree with the post I recently reblogged (see: Semantics) – in a way yes, this trivializes other women, their experiences, their struggles. Women (and men) all over the world deal with the realities of carrying a BRCA mutation every day. The decisions, uncertainty, major life changes, and disruption are a huge part of their lives. For some, not a day goes by that BRCA and cancer aren’t on their mind. Most have watched a loved one deal with cancer and worse. Majority don’t have a famous name or a famous face. Some publicly share their stories via articles, blogs, support groups, and other venues. Jolie hasn’t done anything extraordinary. The “Angie gene?” She’s no pioneer. I have nothing against her and reiterate that I’m ecstatic that she decided to share her story, but she made the same decision thousands of women have made before her and will make after her. Hearing someone say “oh, you had the Jolie mastectomy” makes me cringe and smile at the same time. While I’m peeved by the categorization and potential assumption that I chose this option because she did, I understand that this is the only point of reference some people have and welcome the opportunity to talk about HBOC and BRCA.

3/7/14 update: A few things have changed since I wrote this post in June 2013: mom’s treatment was not effective (or rather TOO effective) and she died in November, my sister’s biopsy results were clear, but she is now prepping for an oophorectomy, my September surgery was NOT my last one,

Tissue necrosis

WARNING: NSFW / graphic content below.

What is necrosis?

One of the risks associated with a mastectomy, or any surgery, is tissue necrosis. This occurs when the blood supply is compromised and the cells aren’t receiving enough oxygen; the skin begins to die. As this happens, it turns black and hardens into a scab. Although the dead tissue can be removed (debridement), it cannot be brought back to life. Hyperbaric oxygen therapy (HBOT) can be used to treat surrounding tissue – more on this in another post: Hyperbaric oxygen therapy.

Breast skin is fragile after mastectomy. If it’s exceptionally thin after the breast tissue is cut away or is handled too roughly, it may die. The same result may occur if the breast surgeon severs too many blood vessels that feed the skin or uses eletrocautery too aggressively and burns the inside of the skin, which may then blister and die.
– Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

My case

Nipple necrosis was one of my big worries when I was struggling to decide whether my prophylactic bilateral mastectomy was going to be nipple-sparing. I did a lot of research and talked to both of my surgeons about it. Check out my earlier posts on the topic: Nipples, pecs,bras, OH MY! and Let’s give them a chance.

Left nipple day of PBM

Left nipple day of PBM

I had the unfortunate chance to experience necrosis in the area of the left nipple and skin directly underneath it. The day of my surgery, we could already see that there may be a problem. The left nipple looked “dusky.” On day six, the sterile strips covering the bottom of the nip and the incision underneath it were removed and we discovered a bit of a mess there as well. In the next 24 hours, the area turned black. A little panicked, I reached out to my PS for his guidance. I was told to just sit tight, because there really isn’t anything that could be done. I washed the area with anti-bac soap and kept an eye on it.

Over the coming days, the small area of necrosis changed shape a bit, but did not get better. Check out the images below, which show the changes over a two-week period. The day I wrote this post, 18 days after PBM, some of the scabs on the nipple have fallen off, revealing bright pink skin underneath. The larger area of necrosis under the nipple is still covered with a tough, black scab. I have had four hyperbaric oxygen treatments in an effort to minimize the damage. More on that here: Hyperbaric oxygen therapy.

I am told that my nipple will be fine. Worst case scenario = scarring or discoloration in the area below the nipple as the scabs fall off. We shall see. I will post an update when that occurs.

Necrosis progress

2/22: Scab is slowly lifting up.

Necrosis one month

7/12: Scab is long gone and the pigment has returned.

2013_7_12 Pigment