Change of plans

Well, I feel pretty stupid. I got all kinds of excited about moving forward with the CRBS in New Orleans. And I thought I had it all figured out. And then came the call about the financials...

You see, I knew that they were out of network, and that there would be some cost above and beyond what insurance covered, but I had NO IDEA it would be so much over and beyond what insurance covered. I'm sure it's worth every penny of the cost, but I'm way too pragmatic. In fact, if I had the nearly $40,000 they charge beyond the $60,000 the insurance company would pay, I'd be using that money to design and build my breast cancer information website. So, New Orleans is out.

I'll admit, it was a pretty hard blow. I cried my eyes out for a few hours, and moped for a few more. I was really focused on getting the best care for my revision. But, it's clearly time to take the blinders off, broaden the scope of my search, and find the best care within network, instead. I made an appointment for late July to revisit Dr. Zenn at Duke Cancer Center. He's one of a few surgeons in NC that performs the microsurgery techniques I'd need for the type of revision I want. I consulted with Dr. Zenn before my implant exchange surgery, but chose to stay put because it was easier. I'm interested to hear what he has to say about my reconstruction, and to find out what he recommends and if he is willing to do the revision for me. Please keep me in your thoughts and prayers as I move forward. I'm really in need of some clarity and resolution here.

Also, I realized that I haven't mentioned in the blog what I am doing with the website and fund-raising. I've posted it to the Brave Like a Tree Facebook page, and explained my goals on the www.bravelikeatree.com website, but not here (strangely enough).  Just so you know, I am selling bracelets (and key chains) to raise money for a non-profit website and organization that will address the gaps in information for people in the breast cancer community. The first run of the bracelets sold out quickly, but I have more in stock now, and have added the key chain as well. This is a huge undertaking and will take time, but I am determined to make the best use of the knowledge I gained from this experience to help others avoid some of the pitfalls and difficulties I faced during treatment. Thank you, in advance, for supporting me in this endeavor, and thanks to those who already have!

Reconstruction News!

So, the last time I checked in it was to tell you about that lump I felt which, thankfully, was just fat necrosis from the fat grafting I had done at my exchange. I was so relieved to hear that news, and really was able to let go and enjoy family time in Disney. 

Family fun at Disney!

My 3-month post op for my reconstruction was scheduled for the day after I returned from Florida. Now, you all know I've had some angst about my plastic surgeon, so as I drove the 40  minutes to his office that morning, I prayed to feel settled about this relationship. I never felt right just walking away from him, but I certainly didn't feel comfortable in his care, either. I was feeling particularly desperate for resolution, and very unhappy about how my reconstructed breasts looked and felt. When I arrived at his office, strangely enough, my appointment had disappeared from their system and the doctor wasn't in [insert snark here]. I took that as a clear sign it was time to sever the relationship. Answered prayer!

Last year I met a wonderful woman in the cancer community. At some point, she had told me that she had her reconstruction done at the Center for Restorative Breast Surgery in New Orleans. She was practically glowing as she told me how much she loved her doctor, her care team there, the whole experience. She recommended them, so I checked them out. The doctor's there are doing some cutting edge procedures with microsurgery (to restore blood flow to affected areas), and as I've mentioned in earlier blogs, they are one of only a few practices that do the vascularized lymph node transfer procedure which can eliminate lymphedema (not planning on that just yet - but keeping it on my radar!). One look at their photo gallery, and you can tell that these surgeons do great work!

Here's a picture of me with Dr. Kotz, my oncologist.
He was the keynote speaker this year at
Relay for Life.

In the meantime, I had a follow up to my biopsy with Dr. Weinberg. While there, I asked for her opinion on my reconstruction results. If it were her, what would she think? She told me that on a scale of 1-10, my reconstruction was at best a 7. Then, she went on to point out everything I've been complaining of (uneven, lopsided, one bigger than the other, possibly twisted implants, and restriction/pulling and pain/discomfort in spots, too). Funny, since my former plastic surgeon had already set up the rhetoric that if I was unhappy, it was because of my expectations, not because of his work. But now a talented and respected surgeon, very familiar with breast reconstruction outcomes, is agreeing that this [points to chest area] could be a whole lot better! As a side note, she also said that my radiated skin was in excellent condition. She even called the tissue there HEALTHY, resilient AND she cleared me for a year. Yup, don't have to go back to her for a whole year! My radiation oncologist reiterated that sentiment recently and also cleared me for a year, or forever if I felt I had nothing to report next year in terms of radiation follow-up. Every step along the way to healthy and doctor free is so exciting!  Now, I just have follow-ups with Dr. Kotz (my oncologist) every 6-months, and I'm working through some more PT with Bodies in Balance to get the lymphedema back under control (my old sleeve stopped fitting after my exchange surgery, and pumping didn't get it back under control). 

Feeling excited about fixing things, I contacted the Center for Restorative Breast Surgery to start the consultation process. About a week after sending them the final documents and images they needed, I got an email that said I am a great candidate for the DIEP flap surgery, possibly an extended DIEP flap, and that they could even add implants if I wanted more fullness in the end. For those of you familiar with flap-style breast reconstruction, you know that the recovery is a lot harder, the surgery a lot longer and more extensive than what a patient faces with implant reconstruction. The good news is that this DIEP flap procedure doesn't remove/use the abdominal muscles like a TRAM flap does. Basically, they will use the pudge around my belly to create new breasts, and those new breasts will be a lot more like natural breasts because they are made from my own body tissue and skin. Also, the renowned Vinnie Myers (3d nipple tattoo innovator) works there now, so when it's time for that phase of reconstruction, I know I can count on excellent results. 

At this point, I am waiting to schedule the surgery (and the travel) and to make sure my insurance will cover the re-do. I'm hoping to have the surgery in August so I can recover in time for the Fall semester. I'm not excited about more surgery, more recovery time, and putting more pressure on my caregivers, but I know it will be worth it in the end.

I'd love to hear your questions about this procedure because they'll help me figure out what else I need to ask the new doctor before moving forward. Your prayers and well wishes are always appreciated!