Two years ago today.....was my 50th birthday!!

Two years ago today was my fiftieth birthday and I didn't really get to celebrate in a worry-free, fun way. I had just been diagnosed with LCIS, ALH and ADH and wasn't sure what direction, if any, I should take. So I did celebrate, but I had this really big cloud over my head. Anyway, this year is so very different. There are no clouds. I am worry-free with regard to breast cancer. Amazingly I feel better than I have in years. Truly I am blessed.

It's been a long two years, but so worth the journey. I believe that God puts things in our paths that He knows we can manage it and maybe we can even find a silver lining. I would not have chosen this path; however now that I have gone down this path I am so glad that I did. Just the relief I feel on a daily basis is worth it, but the silver lining in all of this that I have connected with so many people who are facing their own long breast cancer journeys and I've been able to be part of that. Best of all I have gained two DIEP sisters (Sara and Kristine) and the most remarkable medical team in the world. Also I know that people all over the world actually visit this blog, so I do know that in some small way I am also helping them.

As I look back at the last two years I am grateful for a number of things, not the least of which is the benefit of early detection. Early detection is really a two-edged sword. You are given information that tells you you are at high-risk. That's good. You have the information. BUT (and it's a big BUT) there is no clear path. For the first year I was really on my own (with DH at my side). I saw my local doctors here who introduced me to my three choices (PBM, Tamoxifen, Nothing). Then I went to Boston to see an oncologist at Dana-Farber who told me to go home and wait it out. She made me believe that I was wasting her time and that I shouldn't sweat being at high risk for breast cancer. Luckily that experience didn't hold me back for long. I continued to research what exactly I had in my body and what I was comfortable with for choices. In my research I found Dr. Tobias and Beth Israel Deaconess Medical Center and started to put the pieces of my plan together. You can see that my rollercoaster ride began two years ago and it kept on going for a solid year. My blog was my sounding board of sorts. I could get out how I was feeling, what the issues were, what decisions I had to face and all the emotions that go along with being on this journey. Through my blog I was able to find clarity.

Last year, just as I was turning 51, I made the difficult decision to have a bilateral mastectomy with DIEP reconstruction. I was terrrified, but determined to get beyond my risk. It was another rollercoaster year with the fear of surgery looming for months, then the recovery, then another surgery, and another recovery. But now I am back and absolutely better than ever.

It's been a tough two years, but looking back I wouldn't have wanted it any other way. As I said earlier, I am blessed. I no longer have to worry about breast cancer. There are no more mammograms or breast MRIs for me. Soon, I will be down to one medical trip to Boston per year (I will miss my medical team of Dr. Tobias, Maria, Malika and Jean). Now I am focusing on the future. I am working on keeping my new flat belly flat. Life is good.

Today I will celebrate the joy, pride and love in my life. I am joyful that my big decisions are behind me and proud that I did it, although none of it was easy and I am surrounded by loving friends and family. Life is good.

Last Days of Summer

It's been so long since I blogged that I think I may have forgotten just how to do it. Well, not really. All summer I have been on dial-up service and chose not to do much writing online. But now I am back at home and will start writing about my reflections of an awesome summer with my new breasts and about my upcoming Stage II surgery in November beginning in September. That's only a week or so away, so it won't be long before I'll be back in the swing of things....I will cherish these last few days of summer with my girls.

A Picture is Worth a Thousand Words

I am a happy mom. On most days I don't even think about my surgery or my breasts or breast cancer. Life is good. Today, just before this picture was taken I had to tell my girls not to jump on my scar or my belly. They tried not to, but did it anyway, laughing as hard as they could. They weren't hurting me, it's just uncomfortable. But that was the only time all day that I even thought about my body.

It's hard to believe that I could go through this very rugged surgery and 10 weeks later not even think about it. Now that I have the right bras I don't even have to think about what I am going to wear each morning. It is just like it was before the surgery - only so much better.

I saw an old old acquaintance today at at party and we talked about breast cancer. She finished her chemo about the time I started my research into LCIS, PBM, DIEP. She mentioned that when she was faced with the decision to choose a surgery, she chose lumpectomy. The other option given her besides lumpectomy and implants was TRAM. She chose lumpectomy because she didn't want to sacrifice her stomach muscles. She had assumed that that's what I did. She had no idea about the DIEP. I wish everyone had the DIEP presented to them as an option.

Once again I am grateful for my local breast surgeon who discovered the non-invasive LCIS and for the best plastic surgeons in the world in Boston. I know how lucky I am.

Back to Bras

About a month ago I saw the bra-fitter and she fitted me for bras and bathing suits using a prothesis, even though I have breasts. I actually thought at the time that that was my only option.  At first I loved the whole 38C look, but then the heat came and I got a bit uncomfortable (physically). I love the look, it's just the extra weight. So I went back yesterday and asked for a plain old padded 38A bra without having to use the prothesis. I got two - they are wonderful. It feels like the old me. It's better than the sports bras and better than going without.

So feeling pretty normal again, I am revisiting the whole nipples vs. no nipple issue. Swinging toward the nipples right now. I just hadn't realized that I could wear a normal bra, albeit a 38A. I had thought I would be better off with no bra under tank tops (which I still like), but now have a very good option of a regular bra with no protheses. Who knew that you could change breast size depending on the clothing or event. I guess that's a bonus along with the tummy tuck.

Feeling normal - well almost normal. I've always told people that I feel like my old self unless I am touching my breasts/abdominal area. Well, today I found one more time when I don't feel normal. Hula-hooping. Yup, when that hoop swings across my belly I certainly feel it. A bit uncomfortable, maybe even painful. Not enouugh to pop a Tylenol, but it did get my attention. For a moment I was sad. I love playing with the hula hoop.

From experience, like learning to get hugs again, it will take a bit of repetition to feel more comfortable. I won't give it up. It's a fun thing to do with my 4 and 7 year old daughters. Amazingly our bodies and minds do adapt to the new normal. Who ever knew that I would accept and love a body with a huge scar from hip to hip and breasts with circles for nipples!! They are cancer-free breasts and I love them.

Where's the Pain?

It's now well over 2 months since my PBM + DIEP, so I thought I would provide an update on pain. Truly I don't remember when it stopped. If you recall my pain was never more than a 0, 1 or 2, but I was achy and somewhat uncomfortable at times. But now, 2 months out, I rarely even think of my breasts at all. There is that moment in the morning when I decide what to wear when my breasts are in my thoughts, but other than that they aren't.

This amazes me. For two years now my breasts have been foremost on my mind. It was exactly two years ago that I was scheduled for my first biopsy. That biopsy was rescheduled to accommodate my summer schedule, plus there was some denial going on. It may have been postponed, but I was already on the roller coaster that carried me through even more biopsies, mammos, MRIs, ultrasounds, pathology results, breast surgery consults, plastic surgery consults, and ultimately my decision to have a PBM with DIEP at BIDMC in Boston.

As I sit here in comfy clothes with my binder on (I like it!), thinking back to this whole journey, I am reminded of my biggest fear. Pain. Because I had so much time to make a decision on what to do about my LCIS, I focused alot on pain. I read about post mastectomy pain syndrome and nerve damage and general long term regrets. Since there is no going back I really needed to make sure I understood all the risks. Then I had to decide if the risks of  moving forward outweighed the risks of doing nothing. So, at my pre-op visit with Maria in Dr. Tobias' office, I had four pages of questions that she so graciously answered in depth and with humor. 90% of those questions were about pain. The other 10% were about breast size. My fears were certainly bubbling to the surface. I remember thinking that if I was going to back out that now would be the time.

Since everyone is different, no one can tell you definitively what it will be like for YOU. But you won't know until you take the leap. In my calculating mind, I knew that my risk for lymphodema was zero since I didn't need to have a sentinel node biopsy. Remember, what I had was LCIS (lobular carcinoma in situ), a non-invasive bc, which is perceived as a marker for increased risk of bc, not a pre-curser. So, I knew I could dodge that bullet, but I worried alot about residual pain.

At first, immediately after my surgery, I thought I had some nerve damage in my arm. It was there for about 2 weeks, then disappeared. It was very uncomfortable. My fears of residual pain were surfacing, but I was still glad to have had my risk of bc reduced.

I am lucky. Lucky to have had an aggressive local breast surgeon who was committed to understanding my 'complicated' breasts. Lucky to have found LCIS and nothing more. Lucky to have the time to research and understand my options. Lucky to have a supportive family who could step in for us while we spent many days away from home. Lucky to have friends who circled us with love, compassion, support, flowers and food! And lucky to have had very little pain and now to have no pain at all.