Tag Archives: Previvor

Pain in my a…xilla

WARNING: NSFW / graphic content below.

No, it wasn’t all a bad dream; yes, I did get a tissue expander 😦

During my follow up appointment with Dr. M we discussed the reason for this: with nothing separating the pec muscle and my ribs, the tissue on my left breast adhered to them. This wasn’t a surprise, but Dr. M had to do some extra work to prep the pocket again. He went in through my armpit to avoid messing with the incision site that gave us necrosis and later the breakdown that caused an infection. He shared photos he took during the procedure illustrating the adhesion and how he separated and cauterized it:

cauterizedadhesion

TESSAincisionThis helps explain why my left side hurts so darn much! In addition to the internal sculpting, I also have a large incision and the drain tube in my armpit. Doing my best to not move my left arm! I’m still Norco-ing it up every six hours and the drain has been kicking out close to 100mL/day. I went in on Friday with the expectation that I’d be leaving it behind, but at this rate, I’m not sure we’ll be able to remove it when I go back on Monday.

Next steps?

So now what? Well, the right side looks great! The pocket closure and bump in size to 450ccs seems to have done the trick. The other side needs a lot of work to catch up, though. We must wait a few weeks for things to heal before we begin the expansion process. The tissue expander has 300ccs of saline and our goal is 550ccs (Dr. M over-expands). Last year’s expansions were in increments of 50ccs, every other week. Then we wait four weeks until the exchange, which puts us out to sometime in August. Here’s to another awkward summer!

prepostop

Now some good news …

I have been downing Sunsweet Prune Juice, oatmeal with flax, and lots of water in an effort to avoid that dreaded post-op constipation. I also tried Smooth Move tea for the first time. I am happy to report: I pooped today! 😀

pooping

 

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.

Yup, tissue expander

Tard on drainsDarn it! Yes, it’s a tissue expander. There was too much scar tissue in there, so we are playing it safe. I’m OK with that … I like safe. Also, yes, I do have a drain and yes, I still hate them!

On my right side, we were able to go up to 450ccs and alter the pocket. From what I can see so far, things are looking OK. I will take photos tomorrow after my dressings are off and this pesky drain is out.

Tiddy BearThe procedure took about four hours and I only stuck around for a little bit after. The Tiddy Bear came in handy for the ride home. I ❤ these things! My throat is sore and my chest does hurt, especially on the left side where I have the tissue expander. No surprise there. No showering until tomorrow after I see Dr. M for my follow up. Until then I look as if I was choked by an Oompa Loompa, because of the pre-surgery scrub on my neck :).

Thank you all for the massive amount of positive energy and prayers sent my way. ❤ ❤ ❤

Hubby has been taking really great care of me. I just took delivery of a green smoothie to drink with my Norco. He keeps reminding me to stay on my ass and take it easy. We don’t want a repeat of last year. Nope! My two kitties have not left my side since we got home. You can’t see the other one, because she is under the blanket, spooning my leg. LOL

Recovery buddy

Box o’ recovery crap

Counting down the hours! My surgery is scheduled for 8:30am on Thursday and should last about three hours. We are doing reconstruction on my left/flat side and pocket revision plus implant swap on the right side. I’m excited to finally get here after the six-month wait, but I’m also very nervous. Not knowing what is waiting for me is uncomfortable.

My bedside box o’ recovery crap is ready! I used my PBM checklist to gather the essentials:

  • Recovery aidsWater
  • Back scratcher
  • Tissues
  • Tiara (of course!)
  • Digital thermometer
  • Scissors
  • Tape
  • Measuring cup
  • Alcohol swabs
  • Chap stick
  • Phone and charger
  • Rubber gloves
  • Snacks
  • Medications
  • Camera
  • Lanyard (I will very likely have a drain or two)
  • Hand sanitizer
  • Lotion
  • Cough drops
  • Note pad and pen
  • Kindle

I think I’ve got it covered. Don’t you? Now I just need to pack my hospital bag. I expect to be home in the afternoon, so this should be quick. Wish me luck! Talk to you later ‘gaters.

Fighter

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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Breast Prosthesis

thisguyGuess who has two thumbs and the same number of foobs? This .. gal. No, I haven’t had my reconstruction surgery yet, but I did acquire a new breast prosthesis to compensate for the flatness on my left side. I recently said that if somebody is uncomfortable with my lack of bosom, that’s their problem. Well, my thoughts on that haven’t changed, BUT I did realize that I would soon be in a situation where I’d prefer to avoid having these conversations altogether.

Vacay

Hubby and I are going to visit his family in the Caribbean. It’ll be up-close-and-personal and about 85° Fahrenheit, which means my state will be unavoidable and questioned. If I spoke fluent Spanish, I’d say bring it on, but I don’t, so that leaves all the conversating and explaining to my hubby. I just don’t feel it necessary to do this to him. I’m very much looking forward to spending time with his family and enjoying getting away from everything.

How to acquire a foob

So, where do you even start? I remembered that the awesome Miss Casey Eischen – who is a rock star fitness expert, nutrition guru, and herself had a mastectomy with some complications – recently shared that she had a breast prosthesis in need of a home. I reached out and got the package just a couple of days later. I was excited and couldn’t wait to get it opened! Unfortunately, it wasn’t meant to be: the size and shape just weren’t right.

ProsthesisBraI dug up the name and number a friend shared with me shortly after my removal surgery for a local boutique that specializes in the needs of breast cancer survivors and individuals in need of image consulting. We scheduled a fitting and I obtained the necessary referral from my plastic surgeon. It took a couple of visits and an overnight shipment for us to get the piece just right, but we did it. Here it is, my new friend. Can you tell? The prosthesis is on the right side of the photo. It looks great in the pocketed bra and even better in clothing! I won’t fool the TSA agent reading the images produced by that airport body scanner thing, but I’m confident that I won’t be fielding and attempting to answer uniboob-related questions in Spanish. Yo no hablo mucho español.

I got the prosthesis and two bras. All of the pieces are covered by insurance, but standard deductibles and out-of-pocket maximums apply. Since my insurance plan year just restarted on January 1st, I have not yet met my deductible, so had to cover the total myself. Not a huge issue, as I will have additional expenses with the April surgery and will have to exhaust my deductible and out-of-pocket maximum then anyway. The damage? Around $400. Not too bad. Breast prosthesis: $300, two new bras: $98, consultation fee: $20, not having to answer awkward questions from distant in-laws about your missing boob: priceless.

ProsthesisSideProsthesisFront

Previvor gear

I’m sure by now you’ve seen one of these confession t-shirts: yes they’re fake, the real ones tried to kill me. Right? My boobs never actually tried to kill me, I got rid of them before they could, so I never really felt I could wear one. Well, now I can with a more appropriate phrase: yes they’re fake, my real ones were plotting to kill me.

With that design and others, I created a new zazzle.com store to make them available to others that may want to express their sentiments about hereditary breast and ovarian cancer (HBOC) syndrome, BRCA, previvorship, cancer, etc. Here are a few of them:

Zazzle.com shirts

I will be donating 20% of sales to FORCE: Facing Our Risk of Cancer Empowered. FORCE is the only national non-profit dedicated to improving the lives of individuals and families affected by HBOC. People like me. With each Dollar FORCE helps educate the public, advocate for our common cause, support our community, recruit participants for HBOC-specific research of detection, prevention, treatment, and quality-of-life, and so much more. If you’re looking for a fun previvor-style shirt and want to support FORCE, this is your place!

FacingOurRisk.org

On that note …

Happy New Year, Happy Birthday, FORCE!.

FORCE just celebrated its 15th birthday! FacingOurRisk.org is one of the first places I landed when I was embarking on my mastectomy journey. It is an amazing website filled with an incredible amount of information relevant to individuals and families facing HBOC. There is a message board, local group finder, lots and lots of articles and other resources, a photo gallery, info about studies and clinical trials, etc. If you haven’t yet visited FacingOurRisk.org, check it out!

Letters to Doctors: The BRCA and HBOC Syndrome Edition

Have you heard of this awesome new book yet? Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition was written by Dr. Jonathan Herman and Teri Smieja and is a really great book that aims to educate doctors about HBOC.

Among many other things, Teri has been blogging for a few years (Teri’s Blip in the Universe) about her journey after finding out she carries a BRCA1 mutation. Here’s more about Teri as well as this amazing book (reblogged from www.LetterstoDoctors.com).

What is Letters to Doctors all about?

By Teri Smieja

My name is Teri Smieja. I’m a BRCA1 Previvor, BRCA blogger, co-creator of the largest, active BRCA support group on Facebook and the co-author for an epic new book in the BRCA / HBOC realm. Our book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition.

Letters to Doctors went ‘live’ on amazon.com on October 18th and hit #1 in two genres within the genetics and new medical books categories on the same day it was released. Two weeks later, we are maintaining the #1 spot in genetics and hope to do so for many months to come.

Letters to DoctorsLetters to Doctors is unlike any other BRCA book on the market in that the main target is the health care professional. Letters to Doctors has much inside of it to help the patient learn how to better advocate for themselves too, but our main focus is the medical professionals. We plan to change the way things are being done, so that people will no longer needlessly die from breast and ovarian cancer. With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients.

My co-author, Dr. Jonathan Herman (a practicing ob/gyn in NY) and myself are making no money from this book, as all profits after production costs are going straight to BRCA / HBOC related charities. We are hoping that everyone will purchase two copies; one to keep and one to give to their doctor.

Those in the high-cancer-risk world are erroneously being told by their doctors too often that:

  • You are too young to worry about this.
  • You are too old to worry about this.
  • You can’t get this mutation from your father’s side of the family.
  • Your insurance won’t pay for genetic testing.

Doctors are missing giant red flags in their patient’s intake questionnaires, such as:

  • Family history of ovarian cancer (ovarian cancer is always a red flag).
  • Family history of male breast cancer.
  • Family history of breast, ovarian, colon, pancreatic, melanoma, and other BRCA related cancers.

The dots are just not being connected. Many patients rely on their doctors to be the most informed, but in the BRCA / HBOC world this is just not always the case, and people are DYING because of it.

Dr. Herman and myself believe that our doctors want to do right by us, but are basing their practice on outdated information and often times think that their patients are not emotionally strong enough to handle the implications that can come of BRCA testing. We feel that it is not our doctor’s place to judge whether or not their patients can handle this knowledge. It is not their place to tell us that genetic testing is too expensive (last time I checked, funerals were pretty pricey as well!), and we fill out stacks of paperwork prior to our doctors appointments with the expectation that it will be read, and understood properly.

It is our intention with Letters to Doctors, to help our medical staff understand better, how to do their jobs, and to truly see how important their words are to their patients.

We truly wish to save lives with this book, and know that we can do it. We just need your help in getting the word out there about Letters to Doctors, and our mission.

“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planed for you? Not much.”
― Jim Rohn

BRCA mutations made simple

As many of you already know, although breast and ovarian cancer are prevalent in my family, those of us that have been tested are not carriers of any known BRCA mutations. I had blood drawn for the BRACAnalysis as well as the BART and no mutations have been found. This doesn’t mean that there is not a mutation in my family, however. It is possible that a BRCA mutation hasn’t yet been identified or it exists on another gene, such as TP53 or PTEN.

To me, genetics is a fascinating topic. So much so that I started my college education majoring in it! I love information and love learning about what really makes us tick and what doesn’t. To get a good grasp of what BRCA mutations really mean, you could do tons of research online, in a library, or by harassing your genetics counselor, OR you could just read this really awesome post written by Teri Smieja, posted on Andrea’s blog: BraveBosom.com.

BRCA mutations made simple

“A good way to think of it is this:  You have an instruction manual for making a car (the instruction manual represents the DNA). The car represents the protein. The instructions for making the engine (the most important part of the car) might be on the last page – say page 9663 – of the instruction manual (this could translate to a mutation BRCA2 9663delGT).  If that part of the manual is deleted, then the engine will never be made and the car will never run. Thus, a deletion on the last page of the manual could be just as harmful as an earlier mutation (say, one that ruined the rest of the manual, or one that deleted instructions for the wheels).”

Make sure you stop by Andrea’s blog and read the full BRCA Mutations Made Simple post.