Tag Archives: FORCE

PICC

WARNING: NSFW / graphic content below.

PICC lineI wish that PICC stood for something fun like Party In a Cool Club or Pretty In the Color Chartreuse (I like green; I’m also not very creative). Unfortunately in this instance, it means Peripherally Inserted Central Catheter. That is what I am now sporting.

How did I get here?

One month ago I had my latest surgery: an exchange of right tissue expander to implant. Two weeks later I noticed a red spot below the incision and was put back on an oral antibiotic: Bactrim. During my follow up appointment a week later we did an ultrasound and the only thing we got out of it was that the skin layer in the area that is red is thinner than in the areas that are not red. There isn’t a mass or anything like it and it doesn’t look like there’s fluid build up either, but that doesn’t rule out an infection. We added a second antibiotic to the mix: Rifampin. After another week, this thing seems to be getting worse, not better, which tells me the oral antibiotics are not helping.

2015_8_19I consulted with my PS via email (including daily photos; this one is from Wednesday evening), as I was on a business trip and wasn’t able to see him in person. Based on a similar experience of a woman in the Facebook Prophylactic Mastectomy group (I ❤ this group!), I asked my doctor about IV Vancomycin. This is the big gun in antibiotic-land. He agreed that this was an appropriate next step.

Yesterday I hightailed it to the hospital’s radiology department to get a PICC put in for the Vanco infusions. As mentioned above, this is a peripherally inserted central catheter that is used over a prolonged period of time to deliver extended antibiotic therapy. I have never had one of these before and was nervous about it. The process is pretty quick and mostly painless. The nurse did a great job explaining exactly what was going to happen. We also chatted about BRCA, family history, and concerns about testing and a positive result. I shared my thoughts and experience as well as contact info and our upcoming local FORCE support group meeting details. She was right, the worst part was the local numbing injection that burned for about 10 seconds. After that the PICC was inserted into my upper arm’s basilic vein and threaded all the way to my heart. That part was painless.

PICC xray

I am set up to receive home care versus being hospitalized and this is all covered 100% by my insurance provider, because I have already met my deductible and out-of-pocket max for the year. However, one of the requirements is that I am home-bound while I receive this form of therapy. Not really an issue, since I work from home and have a hubby that can run errands. There are two ways I could receive the infusions:

  1. IV bag and electronic pump: this option is managed by the nurse and automatically pumps the meds every 12 hours, but I am attached to the bag and pump.
  2. Elastomeric pump (aka ball or grenade): this option would leave me free of attachments except for an hour or so when the pump is needed to push the meds, but I do the work.

Since I am very new to this and am not 100% comfortable with being in charge of administering the meds, hooking things up, and flushing lines, I chose option 1. I took delivery of all the supplies and six days worth of meds later in the day and had my first visit with the home care nurse in the evening. She explained how everything works, hooked me up to the bag and pump, and sat with me for the whole infusion to make sure I didn’t have any adverse side effects. All went well. She also explained that I am able to switch to option 2, but not until I have gone through the six day supply of meds that were already delivered in the larger bags (no returns). A nurse will visit me every two days to change the bag and dressings.

So far not seeing much of a change in redness, but I’m not expecting to at this point. The vanco makes my scalp and palms a bit itchy, but that is a common side effect. I experienced same before each surgery. Before my second infusion this morning I took a Benadryl, which helped. Next nurse visit will be on Sunday.

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FORCE Conference, BSO, HRT, and more

This past weekend, I attended the 9th Annual Joining FORCEs Against Hereditary Breast and Ovarian Cancer Conference in Philadelphia. This is the only event of its kind; created by and for the members of the HBOC community. To say that this event was awesome is a gross understatement. It was an amazing weekend packed with relevant content and activities.

Leading researchers and experts in related fields presented on latest research. I learned about newest options for cancer screening and prevention. Most interesting to me were the sessions related to ovarian cancer, since I am currently considering a risk-reducing bilateral salpingo-oophorectomy (BSO).

My personal takeaways on the topic of Ovarian Cancer: Early Detection and Prevention, presented by Dr. Beth Karlan, Cedars-Sinai (slides):

  • Taking tubes only (salpingectomy) and sparing the ovaries is a reasonable intermediate step for younger women (I’m 34). It is still recommended to remove the ovaries in natural menopausal age (early 50s).
  • Taking one ovary does not change age of menopause.
  • In general, there is no need to remove uterus at time of BSO or salpingectomy alone, based on current info and this varies by individual.

The tube-only and one ovary option is very attractive to me at this point. However, if I choose the BSO, surgical menopause will very shortly follow, so I also attended a session about Managing Menopause Without Hormones by Dr. Ann Steiner, Penn (slides) and Dr. Diljeet Singh, Permanente (slides). If you’ve been reading my blog for a bit, you may have noticed that I maintain a plant-based lifestyle and stay away from processed or synthetic products. When it comes to managing menopause symptoms with hormone replacement therapy (HRT), I am hesitant. I understand there are bio-identical hormones available and Premarin is an option, but I am uncomfortable with the idea of any HRT, because essentially I will be introducing something my body didn’t produce itself naturally/synthetic. After this great session about other options for managing symptoms, I stuck around to ask each of these experts their opinion on HRT for someone like me, who will need to be on it for 10+ years. Would they recommend HRT to manage long-term issues (osteoporosis, heart disease, loss of cognitive function, etc.) or can these symptoms be successfully managed without HRT? I didn’t get a clear answer and the advice was conflicting, so the jury is still out. If I choose to spare an ovary or both, this will be a non-issue, but nonetheless it was great to learn about the non-HRT options.

I will be discussing this topic again with my gyn onc in October, when it is time for my bi-annual screening (TVU and CA-125). At this time, I know I will be having some risk-reducing surgery in the future, but have not yet decided which type and when.

dinnerOne of tbeBRCAwarehe other awesome things about the conference is that many other women (and men) from our relatively small HBOC community attend (650 this year), so it’s an opportunity to finally meet in-person some individuals I’ve been chatting with online. Also, got a chance to catch up with those that were there last year. Loved spending time with my FORCE buds!

And lastly, THANK YOU FOR YOUR SUPPORT to all those that came to visit nope2BC and bought jewelry. All the proceeds are donated to FORCE and with your help, we raised a lot of money! Hope you enjoy your pieces.

Will you join us next year? The 10th Annual Joining FORCEs Against Hereditary Breast and Ovarian Cancer Conference will take place in Orlando, FL, October 6-8, 2016. I’ll be there!

FORCEconferenceOrlando

Nipple tattoos

WARNING: NSFW / graphic content below.

I recently attended a local FORCE support group meeting. As always, it was fantastic! Our group meets quarterly, varies in size from five to 20, in age from 20 to 60ish, and is comprised of mostly previvors (in various stages: just found mutation to done with surgeries), but also women currently undergoing treatment, as well as survivors. There’s something for everyone facing hereditary breast and ovarian cancer to relate to. I highly recommend you find a group near you and attend at least one meeting. You may find that it’s not for you, but it’s worth a try. Find a FORCE group near you by visiting the local support page. Other organizations also have in-person support group meetings, so check with your doctor or do some googling.

Sometimes we have guest speakers come to share their research, work, products, or information relevant to our community. Our most recent guest was tattoo artist Amy Black of Amy Black Tattoos and Pink Ink Fund. Since 2011 Amy has been specializing in nipple and areola repigmentation as part of the breast reconstruction process for patients post-mastectomy due to breast cancer or as a prophylactic measure. Her 3D nipple tattoos look like the real thing! See for yourself below. Pink Ink FundAmy also founded the Pink Ink Fund shortly after beginning nipple and areola tattooing in response to seeing clients concerned about costs and having no health insurance. Amy’s work both in restorative tattooing and supporting the community is amazing! I plan on paying her a visit once I am done with my reconstruction. In addition to 3D nips, she also does touch ups, repigmentation, and artistic designs.

Here are some examples of her work:

1 5 4 6 3 2

Amy is located in Richmond, VA. If you are interested in contacting Amy, click here.

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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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!

Team FORCE at the local Race for the Cure

Team FORCE

There we are: Team FORCE at our local Susan G. Komen Race for the Cure. We had a great time, even though the weather was not cooperating. We made a lot of new contacts in our local community, both of the vendor/organization type and the individual type. We met some really great people that may benefit from our support and us from theirs! Looking forward to more events as part of Team FORCE.

A lot of you have already supported us by either walking or contributing to our fundraising efforts, so a huge THANK YOU for that. We appreciate every step and every Dollar. If any of you would still like to help Team FORCE, here are some things you can do:

  1. Spread the word about FORCE: Facing Our Risk of Cancer Empowered FacingOurRisk.org – the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me and many of you.
  2. Make a tax-deductible donation to Team FORCE via our team’s FirstGiving page: http://www.firstgiving.com/fundraiser/Vbmichellebraun/2013tidewaterraceforthecure. 100% of your donation goes to FORCE.
  3. Purchase some beautiful Origami Owl jewelry for yourself or as a gift. The Holiday season is just around the corner! 20% of sales go to FORCE. There are four pre-designed breast cancer related lockets (see below) or you can create your own, as I did and a few of my readers too – THANKS, LADIES!!! If you are interested in supporting FORCE and getting some great jewelry, visit our designer’s website and make sure to select Team FORCE Fundraiser at checkout: http://MartineNuera.OrigamiOwl.com.

Pre-designed lockets

Origami Owl Team FORCE