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.

Thursday, February 25, 2010

Cold Feet?

I am not sure where this feeling came from, but yesterday I got really cold feet about my upcoming surgery. I still want the surgery, but am thinking that it might be better for me if I wait until the fall. I hadn't realized that I wouldn't be back to normal in six weeks. With summer coming I have so many things I need to be able to do, like living at my camp with my two daughters, while DH is two hours away. I don't have any help up there, so maybe the timing just isn't right.

Oh, to have a crystal ball. Wouldn't it be so much easier to make these decisions if we could only foresee the future? Putting my surgery off by 6 months wouldn't change the risk. With LCIS my risk increases 1% each year. The risk is that if I put it off I may never get back to rescheduling it.

I do find it interesting that I am questioning my decision to move forward. When I make big decisions I typically do this type of waffling. I like to know that there is an 'out'. BUT with a decision this big, I was surprised that I am rethinking my decision all over again.

One thing I did do was contact my PS's nurse who is going to connect me with a past patient who had all the same things going on that I do: LCIS, PBM, LCIS and lives a distance for the medical center. I am looking forward to speaking with her. This may be the piece of information I need to feel confident in my decision.

People with LCIS are in a unique situation. We don't have invasive cancer. What we have is a marker for increased risk of breast cancer in either breast with that risk increasing by 1% each year. 20% of in situ cancers are LCIS, so we are not in the majority. I know of lots of people with LCIS (from, but I don't know anyone else in real life. So a big missing piece for me is talking to a real live person who has had the very same diagnosis as me.

At this point the best matches for me are my BRCA+ friends. They have been so supportive of me and my upcoming surgery. It doesn't matter to them that I am not BRCA+. They know what it is like to be told that you have a 50-85% chance of getting breast cancer by age 80. These women have been inspirational, brave, educational, supportive......the list goes on. They have helped me more than they will ever know.

My online LCIS friends have also been supportive, but still there aren't many of us who have gone down the same road as hours from the hospital, LCIS, PBM and DIEP. With LCIS, we fall in the middle, we have non-invasive breast cancer which may never spread. We are given our options: 1. vigilant follow-up, 2. vigilant follow-up and tamoxifen and 3. PBM. We are left to choose on our own. There are no advocates for us. We do our research, connect as much as we can and hope for the best.

So, in hoping for the best, I am trying to wiggle away. I want stop thinking about this and get on with my life. I want to focus on my kids, my DH, my business, my life. I have no idea if this is normal, but this is where I am at today. I call it cold feet.

Wednesday, February 24, 2010

A New Day!

Today I woke up to find several very nice comments on my blog. Thank you!! I am understanding what it means to have support from people who have traveled this road before me. You really can understand the emotional rollercoaster I am riding right now. Most of the time I can block out my surgery, but not for long. A friend described it as "all consuming". She was right.

For me "all consuming" is the planning that goes along with being away from my children, my home, my work (I am self-employed); getting my paperwork all in order from insurance approvals, to medical treatments forms signed for my kids, to updating my will and power-of-attorney, to creating lists for my wonderful sister-in-law who will come and stay with my kids; to planning ahead for meals and setting the house up for recovery.

This last item is tough. We built our home seven years ago with an open concept. It's great, but if you aren't feeling well then there isn't any place to go where it is quiet and dark without going to your bedroom. I was sick a few weeks ago and felt awful. I decided to rest in a recliner in our living room. Oh, the noise. There really isn't any way to shut it out. So I did go upstairs to my bedroom to rest, but then I felt like I was locked away and very isolated from everyone. I will have to ask Teri about this. Since she is living the recovery as I type this. I can't tell you just how helpful it is to have someone who is two months ahead of you on this road to significantly reducing our breast cancer risk.

I am one day closer and feel much more connected and even more secure in my decision today. Teri's friends and aunt who commented on my post yesterday really gave me a boost. Thanks again!!

Tuesday, February 23, 2010

Eye-Opening Blog!

Today I had an eye-opening experience. I follow Teri's Blog. I went back through some of Teri's posts from right before her PBM + DIEP, through her surgery and now almost a month later. "Brave" is the word that comes to mind as I read her posts. Brave in moving forward with surgery even though she didn't have invasive breast cancer (BRCA+) and brave for sharing her feelings and thoughts as she moved through her decision making, surgery and now, recovery.

Although I am heading down the same PBM + DIEP road, I feel anything but brave. I am scared. I really don't like pain and really worry about never being pain-free again. I worry that I don't know enough about what to expect. I guess I should make a list of questions for my pre-admission testing date (March 8-9). I worry that I will doubt my decision. I worry about post surgery depression. I worry about my husband being the only one with me in Boston. I worry about my kids back at home, with a very favorite aunt. I worry that I will sacrifice my pain-free life for a breast cancer-free life riddled with pain. I am not BRCA+ (at least I don't think so), but have LCIS, ALH, ADH, family history, and all the risk factors which gives me a greater than 1 in 2 chance of getting breast cancer.

One of the things that struck me on Teri's blog was a video she made right before her surgery. Here is this young mother who appears as healthy as you and me heading into major surgery. It's incredulous. One day healthy and happy (and high risk) and the next day cut open from hip-to-hip with breast tissue removed, drains in and in pain (with a 2% risk). I don't have any friends who have chosen this path. I have lots of friends who have had breast cancer, surgery, chemo, radiation, then reconstruction. They all agree that I am doing the right thing. BUT, I don't have to. I can let life choose my direction instead of being pro-active and choosing this very difficult path. If only I had a crystal ball.

My thanks to Teri for her courage to move forward, her courage to share and her courage to educate. Because of Teri I have a much better idea of what to expect before, during and after surgery. I haven't heard any of this from my doctors, yet, but will on March 8-9. But now I feel much better prepared and will know what to ask and what to expect. I do think keeping a steady dose of pain meds in my system will be at the top of my list!!

Thursday, February 11, 2010

Ready, Set, Go....

You will recall that my big date was set for March 15th. Well, now it is March 29th. The breast surgeon has something she has to do that day, so I got rescheduled. Very distressing at first, but actually worked out very well for us. First, I get to keep my breasts for two more weeks. Second, I have more time to get organized. Third, I know this date won't get changed.

You may have been able to read between the lines that I haven't been totally onboard with this whole decision. However when the date is taken away and you get an opportunity to rethink the surgery altogether, you really come to terms with what you want and what your don't want. I never once said to myself that I didn't want the surgery, I was upset and looking at other alternatives to having this done in Boston. So, after sleeping on it, I realized that the quickest way to get this behind me is to stick with Boston. I have picked the best doctors I can find in  Boston for this procedure.

So, my mind is made up. I am ready. I am now on the other side of this decision. Now I am ordering things called "marsupials" - a belt with pouches for the drains. I am ordering a hospital bed for the time when I can't sleep flat. I am getting clothes together that open in the front. I have wisps for when I can't brush my teeth. My friends are thinking about how to help. I don't have any doubts. Ready, set, go.....
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