Hugs!!

Today I noticed that I can give hugs without cringing. Can you believe that for years - yes, years - I haven't been able to hug anyone without my breasts hurting? They were always sore and tender. Over the years I gave up coffee, chocolate and anything that I thought might be causing my breasts to be sore. Nothing worked.

Cystic breasts are cystic breasts. And the cysts caused my breasts pain. Pain when running, pain when sleeping and pain when hugging.

So today is a great day!! Even though I have given and received tons of hugs since coming home, I had still kind of protected my breasts when doing it. Until today! I am thrilled. I can give bear hugs!!

This week was also a turning point in other areas as well. First, I haven't had a cup of coffee all week. I love coffee and I don't have to worry about it's effect on my lobules or ducts any more. But I didn't feel like I needed it. For the past month I have craved it and have had a couple of cups a day, but something changed. I don't know what it was, but my body isn't craving it anymore and I am taking advantage of not having to spend the extra time drinking it. The second turning point is that I realize I am back to being me. It is amazing how the body can bounce back from such a big surgery. I do realize that I am lucky and blessed beyond belief to have had such a speedy and uneventful recovery.

A quick note to my regular readers. I will be away for much of the summer and will post even more sporadically, but in September I will begin again. With my Stage 2 surgery scheduled for November I will be posting more frequently at that point. So, have a great summer.  I will be lakeside with Jie Jie and Mei Mei and loving every minute of it. With no worries of breast cancer or surgery, I can relax and enjoy the most important things in life.

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.

Goal Achieved!!

Way back on December 7th, 2009 I decided to book my surgery. I was at a PTFO meeting on that Monday morning, when a friend said that she was ordering tickets (if I wanted them?!!!) to the Taylor Swift concert at Gillette Stadium in Foxboro, MA for June 5th, 2010. I said "YES!" then went home to book my surgery. I had a goal: to be well enough in my recovery from my PBM + DIEP to go to the concert with Jie Jie on June 5th.

I needed that goal to have the courage to pick up the phone and place a call to Dr. Tobias' office requesting a date for surgery. It was the toughest phone call I had ever made - but I HAD A GOAL! At that time I had met with my doctors at Beth Israel and knew I wanted to get rid of my LCIS and risk of bc, but hadn't found the courage to schedule surgery. It had been a week since my final consult in Boston. I was mulling it all over in my head, wondering if I should do it in 2010 or maybe 2011 or even 2012. I was finding ways to procrastinate..... until my friend presented me with this once in a lifetime opportunity!! Here are excerpts from my posts of December 7 & 8, 2009.

"Today I made the decision to move forward with a prophylactic bilateral mastectomy. It was a year in the making and by far the toughest decision I have ever had to make. Although the final decision was mine to make, I want to thank my friends and family for being there every step of the way. You all rode the same rollercoaster with me and I will be eternally grateful to you all."

"March 15, 2010 is the date of my surgery! It's overwhelming. The emotions connected to hearing this date are across the board. Relief. Fear. More Relief. More Fear. And believe it or not - pride. I am so damn proud of myself for making a decision. It would have been so much easier to wait and wait and worry and wait. I will keep this to myself all day. I need to mull it over. I need to see what my 'gut' reaction is. I need to cry a little bit. I need to accept who I am and why I am making this decison."

When looking back I know how I felt and how uncertain I was. But there was one thing that I felt very certain about and that was that I wanted to go to the Taylor Swift concert on June 5th no matter what. Jie Jie loves Taylor Swift and we love the family who provided this opportunity for us. I was determined to make this happen on my end. As anyone knows who is facing surgery you worry about the outcome, the pain, the recovery, your energy level and lots of other things. So, being physically ready to spend several hours in a car and being at a crowed stadium with 55,000 people worried me. I knew I needed to have my surgery sooner rather than later, so March sounded perfect. I knew I need time to heal. I would have both April and May to heal and 8-10 weeks seemed like a good amount of time.

What I didn't know at that point was how quickly I would heal, how minimal the pain was, how much easier it is on this side of surgery. So as I waited for the surgery date I kept my eye on the goal. Even when my surgery date got moved back two weeks I kept my eye on the goal. I wasn't happy for lots of reasons, but I figured I should still be able to make it to the concert. Dr. Tobias' nurse, Maria, reassured me that I should be okay by June 5th. She thought that even 8-10 weeks out I might still be getting a bit tired late in the day, but that physically I should be able to handle a concert with no difficulty.

Goal achieved!!! First, I can't thank my friends enough for making this happen. Without the motivation they provided by offering us tickets, I may still be blogging about my decision to do my surgery and when would be the best time. So, thank you Rita and Shawn!!!!  Second, my risk of breast cancer is now 0-2%. Third, I feel fantastic. Yes, I do get a bit achy here and there and yes, my energy level dips at the end of the day, but I am thrilled with my recovery. And lastly, the Taylor Swift concert was the absolutely fantastic. I can't give praise high enough to tell you just how awesome Taylor Swift is as a performer and a role model.

So, on a Monday morning in June, I am happy and proud and grateful and blessed.

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.

You're Doing What???

About a year before my PBM + DIEP I told some of my extended family what I was planning to do. There were varied reactions as can be expected, but what I didn't realize was that no one thought I was serious. I think the nature of the surgery - removing both breasts and replacing them with abdominal fat seemed way too far out there for them. I hadn't realized that it was just too incredulous for them to believe. At the end of the summer I left it that sometime before the next summer I would do the operation, but that I needed to assemble my medical team.

As the months went by I never heard from anyone. This is typical, but I thought they might be interested in a surgical plan update, but no one asked. So I didn't tell anyone. I had assumed that they didn't really want to know. Little did I know that they hadn't taken me seriously.

This was a great lesson for me. Although I blog (translated that I share my thoughts with the world) I am a very private person. I tend to talk about things during the processing stage, that's how I gather information. Once I have processed all the information I stop talking. My decision making style is very internal and quiet. When I am in that stage my efforts are not on discussing, but on researching and clarifiying. Only those in my very close inner circle are privy to what's going on then. So unless someone had specifically called to ask about my pending surgery or my non-invasive breast cancer I would not have reached out to tell them once I had moved from the processing stage to the decision making stage.

To take a step back, when we were exploring international adoption I did the same thing. For years beforehand, I talked about it, gathered impressions from family and friends and processed it. Once I was ready to move forward I stopped the discussions and started moving forward toward the making it a reality. It was only when our first referral was imminent that we shared our news. Same as with my PBM + DIEP.

The knowledge of how I actually make decisions will help me to keep people in the loop if they choose to be. I can honestly say that there are some who prefer not to know certain things and I will certainly respect that. In the end, life is a process of learning and growing and changing, much like a puzzle. It's just a puzzle without a clear picture. There are always new pieces you discover along the way. Here's a quote by Joseph Campbell that speaks to how life sends us down unexpected pathways. It is from these pathways that we bring depth and color to our lives.

"We must be willing to get rid of the life we've planned,
so as to have the life that is waiting for us."