Time to Move On.....

Well, it's been almost a month since my final follow-up appointment for tattooing. I've been dragging my feet with my final blog post. It's just hard to say good-bye. Although I didn't decide to have a bilateral mastectomy with DIEP reconstruction to make friends, that's what I did. So, writing my final blog post feels like I am leaving a part of me behind. Yes, I did leave my breasts behind, but that's not what I mean.

Before I close, let me just tell you that this journey I have been on for almost three years has been a blessing in disguise. First and foremost, I reduced my risk of breast cancer to 0-2%. I can live with those odds!! Secondly, I made the right choices in procedure, medical team and support system. With those decision I actually found a whole new circle of friends.

The DIEP is not for everyone; however as I type this post I can honestly say that I rarely think about my breasts. They feel so much like my originals that I don't even notice that they aren't. My medical team was absolutely the best choice I ever could have made. I don't think they come any better than Dr. Tobias and Maria at Beth Israel Deaconess Medical Center. I have absolute trust in them. And for support I had a core group of family and friends who were beside me the entire time through the decision making, surgery and recovery. I chose not to tell everyone and was quite selective in who I did tell. The key to the inner circle of support was if I felt someone would truly be there for me and my family. I chose well. So thank you!!

Regrets? NONE! The surgery is now in my past and every once in awhile I hear myself saying that it was 'the best thing I ever could have done for my family'. I truly believe that, but I also remember being in the PACU wondering if I was going to die (from the phlegm ball and morphine sensitivity). But all these months later those are fading memories.

One thing that will never fade is my desire to continue to help other women who are facing the same decisions that I faced. My DIEP Sisterhood continues to grow with Sara, Kristine and Laurie. All of us are different ages and were diagnosed at different stages; however we found each other and have been able to support each other through surgery and recovery.

As my DIEP Sisters know, I am always willing to reach out and talk or email anyone who wants or needs support. People from all over the world visit this blog, but it is the rare person who reaches out. So, to all those women who read my blog, but never reach out, I wish you the best with your decisions and just know that I am an email away!

There is one person I owe so much gratitude and that is my husband. Now that life is back to normal I sometimes forget just how supportive from Day One. He stood by me, he didn't complain when I spent hours and hours on the computer researching my diagnosis and my options. He took care of the girls when I was obsessing on 'just one more thing I need to research'. He was beside me on the decision making rollercoaster. One day "I'm in" and the next "I'm not in". He took time off for every doctor's consultation, appointment, follow-up, etc. He stripped my drains gently. He told me I looked great when I felt awful. He got me up exercising when he knew I was ready. He encouraged me every step of the way and truthfully if he hadn't been my side, my choices may have been very different. He is my unsung hero!!

I am at peace and excited about the life I have ahead of me. I've realized that it's not the problems you face that define you, but the way you face your problems.

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.

Countdown Begins.....

Okay, so I haven't posted much about my upcoming surgery. This really surprises me. Time constraints have been a factor, like the start of a new school year, a Disney vacation, two classes I am taking, etc. But the reality is that I am not excited about this at all.

I've been squashing and denying all my fears at least until my pre-op appt, which is next week. There is really no sense in worrying about anesthesia, phlegm balls and the general risks from surgery until I have a chance to discuss my concerns with my doctors. My biggest concern is the anesthesia and making sure that I don't feel the same as I did when I came out of 14.5 hours of surgery. Truthfully, I don't think I could ever do that again!! Granted, most people don't have phlegm balls that prevent them from breathing, but that's another story. Still, it weighs heavily on my mind.

Next week I will meet with 'my team' and, I am sure, will feel more confident in my decision to move forward. It will be nice to be closer to being back to normal. And when I think about it, my goal, is for my kids to not be reminded of my surgery every time they see me. That alone will propel me forward.

I was reminded by another DIEP friend whose response to me when I said, "Three weeks from now I will be having surgery." Her response was, "Four weeks from now you will be recovering from that surgery." That really helped me to put it all in perspective. Stage II is such a small thing compared to Stage I. It is minor. BUT I feel great now and don't really want to feel like a post-surgical patient, even for a week.

In time I will wrap my mind around this procedure and get excited that I am so close to the finish line. One silver lining is that I get to visit with two DIEP friends while I am in Boston for pre-op AND I get to see my medical team again. I like that there is always a silver lining!!!

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 breastcancer.org. 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!!

"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.

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.

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.

Week 3 - Day 5

Another little difference is understanding my limitations and accepting them. When we were planning our trip to Boston this week I wanted so much to keep heading south to RI or CT to visit with a an old friend who was so suppportive and a key piece to the puzzle when I was on the fence with surgery. She and I talked for a couple of hours the night before I left for Boston for the surgery and she was just exactly what I needed at that point in time. So, I thought that if we could just head south a bit after my last drain is pulled then we could visit with her. Plus my nephew lives nearby and we could squeeze a visit in with him. BUT, I am now accepting my physical limitations. So, instead of RI and CT we are staying put in ME. That's okay. I realize that I can't burn the candle on both ends or my recovery will be very slow. Even now, everything takes a bit longer. With the drains (even one) I dreaded the whole shower routine. A slight pull on the drain and pain would shoot through my body.

It's very tough to do less. I feel like I should be able to do everything I was doing before, but when your entire core is sore, tight and funky feeling it makes movement difficult. One thing I can do without much difficulty is sit at my computer, thus all the blog posts.

On our little mini vacation in southern Maine we have been able to enjoy the things we love about Maine. We love lighthouses and beaches. My favorite beach of all time is Pine Point Beach, so we always make a point of going there, especially when the tide is out. This beach makes me very very happy!!! So even though I have had to realize that I can't do all the things I used to do (for now) I can still enjoy so many things, particularly when I am with my family.

Just want to thank my friends again for all the things they have been doing. We truly are appreciative of everything and the food is always delicious. I need to add more of your recipes to my Feed the Flap page. Thank you!!!

LIVE UPDATE: By now you have figured out that I pre-post sometimes. Anyway, today was my first drain-less shower - heaven!!! No twinges when the drain would pull or I would accidently drop the drain. No more marsupial pouch for me. I will post photos from yesterday's visit to Dr. Tobias' office when I get home. This morning's breakfast was absolutely wonderful. I consider today to be the first day of my recovery......I really can't tell you just how nice it is to be without that last drain. I have a binder wrapped around my mid-section, but it feels fabulous and the best part is that I can pull my waistband up over the binder - again, like a normal person. Ahhhhhhh.......