May love and laughter light your days, and warm your heart and home.
May good and faithful friends be yours, wherever you may roam.
May peace and plenty bless your world with joy that long endures.
May all life's passing seasons bring the best to you and yours!
~ Robert Frost


Welcome to my blog. This is my story of how I faced my risk of breast cancer, the decisions I made, the support I received and my week by week recovery from surgery. I chose to have a prophylactic bilateral mastectomy with immediate DIEP reconstruction at Beth Israel Deaconess Medical Center in Boston (March 2010). For more information on my 'Medical Team' please see tab above. I also have a wonderful circle of friends who have supported me throughout. They have provided us with lots of delicious meals and desserts. Many of those recipes are included above under "Feed the Flap" recipes. "Feed the Flap" is a term I coined when trying to increase my abdominal (fat) flap to ensure that I was a good candidate for the DIEP procedure. This was not something recommended by any medical professional, it was just something that made sense to me. I think it worked!! Feel free to join me on this journey and feel free to post comments.

Select the tabs on the left side marked Week 1, Week 2, Week 3..... to go immediately to the surgical/recovery part of this blog.

Wednesday, September 29, 2010

6 Month Anniversary!!

Today marks the 6 month anniversary of my bilateral mastectomy and reconstruction. I just want to report that I feel wonderful. I feel normal. Most days I don't even think about it. But when the 29th of the month approaches I do tend to reflect on how far I've come since March 29th.

A year ago I really was obsessing on whether or not I should have my breasts removed to fend off my risk of invasive breast cancer. There were endless hours of internet research trying to figure out if this was my best option or if I should wait and watch. There were endless hours connecting with new friends on the best breast cancer support site online. I can't say enough about the support these women gave me. I found women there who represented both sides of the question, "should I or shouldn't I?" Listening to both sides was key to making my decision. One thing that was very apparent to me was that in 3, 4, 5 or 10 years I DID NOT WANT TO BE spending endless hours at I did not want to waste another minute on this horrid disease. I wanted to be done with it and move on to living my life.

The only hurdle I had to moving on was a bilateral mastectomy with reconstruction. This was very scary to me. How could I possibly live through and recover from a 14.5 hour operation? Would I be normal after all that? Would I regret my decision? These were very real questions.

Sometimes in life you just have to take a leap of faith. I knew in my head that a PBM/DIEP was the right thing AND I found, what I believe to be, the best team in the world to do my procedure. I just had to get the courage to schedule my surgery. That was probably the toughest phone call I had ever made. Once it was made and the surgery was booked, I started reaching out to people I knew personally who had taken this path before me. Five friends come to mind as they spent lots of time with me on the phone answering questions like, "what do they feel like now?", "how did you make your decision?", "did you go with nipples or tattooing?", "what kind of follow-up have you needed?". You get the picture, nothing was off limits. These women were my lifeline. Not one person regretted her decision. No one was in pain. No one died. I could do it.

So on March 29th, 2010 I was as calm as I've ever been as I walked over to BIDMC for a 14.5 hour surgery. I knew I was doing what was right for me and for my family. I trusted my medical team. And now, I simply feel relief that that part of my journey is over. My risk of invasive breast cancer is now 0-2%, not 50-85%. I can live with that!!

Tuesday, September 21, 2010

Getting Nervous All Over Again!

With Stage II surgery on the horizon (November 5th) I am getting nervous all over again. When I got my packet from Beth Israel yesterday with the surgical instructions I had to put it down. Because this isn't the 'big' surgery I really haven't appreciated that it is still surgery.

I am having flashbacks to March 29th. At that point I had put so much into that decision that I was more than ready. Plus I had the advantage of not knowing what to expect. This time I know that I can have an adverse reaction to anesthesia and morphine. Plus, who knows if I will have another phlegm ball incident. The one saving grace is that I absolutely trust my doctor. But it is still surgery.

Needles....not my favorite things. Last time I began drinking lots and lots of water so that my veins would be easy to find and less painful as they insert them for IVs and all the other things they hook up to my body. I can't imagine that I will wake up in the PACU and have tons of things hooked to me like last time, but I just don't know. I can honestly say that the ABSOLUTE WORST DAY of my life was the day I spent in PACU. This is certainly not the case with anyone else I know. They actually liked their nurses in PACU. Again, it's the phlegm ball thing. When you can't breathe, life is tough.

Being a post-surgical patient has been awesome. Being a pre-surgical patient is not quite so awesome. I have to wrap my mind around it all over again. Last time I had expected to be laid-up for 6 weeks, when in reality it was about 6 days, if that. This time I don't know what to expect. I am hoping to be feeling fine the day after as I have purchased tickets to the Super Supper at my daughter's school and want to go to the event. BUT, I know that if I plan on feeling great, I will be down and out and very disappointed. This time there shouldn't be an drains - I pray for no drains!! Plus I have given all my drain supplies (marsupial pouch, bathrobe, jacket, etc) to a friend who just had the surgery. The likelihood of drains is slim.

One other thing is that I thought I was just getting lipo, not that that isn't a big deal, but I hadn't realized that I would also be getting nipple reconstruction during this procedure. I've been on the fence about nipples. I like my breasts they way they are and am not sure that adding nipples will make me happy. I still can choose not to do that, but on the other hand......when I change in a locker room it would be nice to look a bit more normal. And I have two little girls who might even forget someday that I had a bilateral mastectomy if my body looked like everyone else's body.

So, yes, I am nervous. Yes, I will do more research into nipple reconstruction. And, yes, I will do what I can to be the best I can be for my surgery.

Friday, September 17, 2010

Pre-Op Scheduled for Stage II

For the last few months I have been a resource to some friends who are facing the decision of whether to get the DIEP or not following their cancer diagnoses. But now I am the patient again. With Stage II looming on the horizon I am starting to focus on what I need to do and what I can expect from this procedure.

What I know is that Dr. Tobias will go in and smooth out the 'dog flaps/ears' on the abdominal incision. He will also do some lipo and add the fat to spots where breast tissue was taken. This doesn't seem too awfully invasive; however I am quite concerned about me and anesthesia. If you recall, I had a very tough time with that during Stage I, which was 14.5 hours long. When I came out I had a phlegm ball and couldn't breathe for a couple of days. Not breathing meant not sleeping and not sleeping meant "crazy" times. Then, on top of that, I have a sensitivity to morphine! I've been reassured that with this surgery which will be about 3 hours this should not happen again and they won't give me a morphine pump, but I do have my fears.

With all that in mind, I am still moving forward. Today I scheduled my pre-op appointments. I have timed these appointments so that I can dovetail my trip to Boston with a visit to a friend who is having Stage I that week. This will be my first visit to Boston by myself. I am excited about the adventure of the trip, but also that I don't have ask to anyone to watch the girls since DH can do that.

It feels like years since I have had to deal with referrals and authorizations, but I am back at it. Luckily I have a wonderful PCP whose staff 'gets it' and makes it easy for me. One thing I have learned along the way is that my insurance provider is very much a member of my 'team'. They may be the silent partner, but without them none of this would be possible. Before each appointment making sure that they are on the same page is essential.

So, now I need to wrap my mind around another surgery. One thing that is very very different this time around is that I am not spending endless hours on the internet like I did with Stage I. I want Stage II. I know that I am in good hands. I know that they will answer all of my questions and Maria has already done alot of that!!!

Wednesday, September 8, 2010

"More importantly, how does your husband like them?"

This is a post that has been waiting to come out. Maybe I am being a bit touchy, but when a friend's friend (male/55+) said, "More importantly, how does your husband like them?", I didn't take it well. I gave him just a cursory response, but later thought about the absolute thoughtlessness of this comment. He is great example of someone who truly doesn't get it. I did not have my breasts removed/replaced for any other reason than to reduce my risk of breast cancer. Going from a good B-cup to a small A-cup isn't about cosmetics. I've wondered what it is that I said that may have gotten him thinking I was in for enhancements. Anyway I just needed to get this off my chest!!

My blog is meant to be about my experience as a high-risk woman, diagnosed with LCIS (lobular carcinoma in situ) and when faced with my options, chose to have a prophylactic bilateral mastectomy with immediate DIEP reconstruction at Beth Israel Deaconness Hospital in Boston with the best doctors in the world (my opinion)! I have completed Stage I of my DIEP procedure. I still have one more surgery and two more office procedures before I am complete. Stage II is scheduled for November 5th.

My posts will continue, albeit sporadic since I have a pre-K daughter who attends school half-days and I am trying to fit my work into those short periods of time.
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