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!

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.


Friday, March 29, 2013

THREE YEARS!!!

Today marks the three year anniversary of my PBM + DIEP. It has been an awesome three years. I would not have changed a thing, well, with the exception of my 'sensitivity to morphine'. Looking back, this whole experience was a bump in road, although at the time it seemed as if it was a wall, a huge obstacle to get over. I know what it feels like to be diagnosed with something that does not offer a clear solution. Because I had options I often wondered if taking the route of PBM + DIEP would be overdoing it. Now, three years later, I can continue to say that it was the best thing I ever did for myself and my family. There are no more MRIs, no more ultrasounds, no more mammograms and no more appointments with a breast surgeon. I don't miss any of that. Most of all there are no more worries about if or when breast cancer might take hold of my life. I am happy!!
 
 

Thursday, March 29, 2012

Two Years Ago Today.....

Today marks the second anniversary of my bilateral mastectomy and DIEP surgery!!! How amazing!! It's hard not to think about on March 29th. As I was exercising this morning with Mike at 5am, I kept asking him if he remembered what we were doing two years ago at this time. Then five minutes later I asked him again, then again and again, until about 7:30 at which time I was taken to the OR with Dr. Tobias.

As my day wore on I didn't give it much thought, until now when I looked at the clock and saw 7:15pm. Two years ago I was still in surgery. It had been about 12 hours and I still had 4.5 to go. Of course I felt nothing until the wee hours of the morning. But my husband had to wait and worry all day long. Not that I remember this, but it was pouring rain. Mike tells me that he walked and walked and walked around Boston that day in the pouring rain. It rained so hard that week that there was record-breaking flooding in Rhode Island. I do remember seeing that on the news when I began to recover.

So anyway, on my second anniversary, I am proud of myself for deciding on the PBM + DIEP, am eternally grateful to Dr. Tobias, Maria and Dr. Curtis. I could never have found a more talented, more caring team in the world. I am also relieved to have all of this in my rearview mirror.

As time goes on the memories fade, but the appreciation for my family and friends grows. It was tough to hang in there with me as I researched and researched and researched for a year and a half. I am reminded of their love and support for me each time I have the opportunity to pay it forward.

From this blog I have found new DIEP sisters.....Sara, Kristine, Jen, Carol, Laurie and many others who have reached out as they have moved forward with their own DIEP journeys.

Just before my surgery, DIEP sister, Jen, told me, "You will go back to your normal when all this is over. It's still you and your life." She was so right!! Before surgery I thought that my whole life would change (I actually thought I might die). In the end, everything is the same, but better, SO MUCH BETTER.

Thanks for visiting,
Love,
Joanie

PS. Here's one last thought.....I found this quote on my blog and thought it would fitting for how I feel now when looking back.....

It'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."

Wednesday, May 25, 2011

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.

Tuesday, April 5, 2011

Stage III - Tattooing is complete!!

So last Thursday I had Stage III with Dr. Tobias and Maria in Boston. This was the first time that I hadn't done any research into what to expect.

Tattooing just seemed like the last step and would be the step that would make me whole again. Remember, all along I have been happy with the outcome. After Stage I, it was the circles, after Stage II (a few weeks later) I was happy with the nipples, lipo, etc and now after Stage III I am happy to look whole. Of course I am looking at myself in the mirror from a distance right now so I can't see the 'wounds'.

Up close, it's still a bit icky. I am wearing wound care bandages and gauze bandages under my bra. They look better now than they did last Thursday when they were just bloody nipples!! I hadn't realized just how tattoes are made. That's the lack of research. I knew I was still moving forward with it, regardless, so I didn't invest any further time or energy into it. I figure I invested a year and a half into researching my decision to have the PBM + DIEP that even a little discomfort wasn't going to be a big deal or hold me back. Plus, I absolutely trust Dr. Tobias, so that helps alot when moving through the Stages of DIEP.

Here's the play-by-play of Stage III. First you select your 'colors' from a palette. I deferred to Dr. Tobias who pulled my original breasts up on his computer and created a blended color to match my original color. Next, he tested the site to see if I would need a local. I did. Other than a few needle pricks from the local, I didn't feel a thing.

Most of the procedure, which was 2 hours long, I just talked with Dr. Tobias and Maria. I was able to ask lots of questions about my Stage I surgery and the 'issues' that surfaced way back then. I had no idea how he was creating the pigment for the areolar, but afterwards I got a good look at the bloody nipples and figured it out. Lots of needle pricks.

So, now my job is to keep them free of infection and not to let them scab up and get pulled off with the wound pads and guaze. A little Neosporin helps. I've had to take an antibiotic for the past few days and have one more day to go. Am also taking Tylenol since they seem to be a bit tender/sore.

I have one more follow-up to Stage III in late April, then I will be totally done with the DIEP.

Before I end my blog I will post about my reflections a year later. Then I will turn my blog into a book, which I will hold near and dear. This blog has been my 'friend' for a very long time now. It has also brought me a new 'sister', for which I will be forever grateful. This blog was there when I needed to air my feelings, but didn't have any place to do that. Blogging was a way for me to process what was going on in my head and in my heart. It was a way of seeing in black and white just what I was dealing with.

To anyone reading this, thank you for visiting. I hope that my blog has been helpful to you on your DIEP journey. My heart goes out to each and every one of you!

Tuesday, March 29, 2011

One year ago today.....

Has a whole year passed since my bilateral mastectomy and DIEP reconstruction? Really?!!! Capturing those thoughts and fears from a year ago is easy. It was such an emotional time for me and my family. Much of that time will forever be imprinted on my memory. The day we left home and drove the four hours to Boston felt like a march to my death. The last thing my then 4 year old said was, "I am afraid you are going to die." That was so sad. I tried to comfort her and reassure her, but she was afraid. Truthfully we were all a afraid. It's hard to imagine what a 14+ hour surgery would be like when you are waiting for it to happen.

BUT, on the other side, I can say that it was THE BEST THING I EVER DID FOR MY FAMILY!!! Significantly reducing my risk of breast cancer from 50-85% to 0-2% is life changing. Personally I feel better now than I did before the surgery. Well, it helps that I had a tummy tuck and the removal of painful breast tissue in the process.

In reflecting on my life one year ago today, I remember showering with the special pre-surgery soap, then getting dressed in my sweat pant outfit, then the walk from the Best Western Longwood to the surgical building, sitting on the round couches waiting for my name to be called up to the waiting area. As I type this I can still physically feel the very same emotions. The one thing that allowed me to put one foot in front of the other was my trust in Dr. Tobias and the confidence I had gained from other women who had walked this road before me. I remember being ready.

After the pre-surgical mark-up by Dr. Tobias with his purple marker, I was given some happy meds and off I went. My worries were gone as they wheeled me off. At that point Mike began his wait. I can't even imagine what it was like for him.

As the day wore on, I had the experts with me!! Assembling the right team was a challenge and a gift. I'll give you a bit of background. In 2008, after my second biopsy and with the diagnosis of LCIS, I decided to create a surgical plan just in case I needed it at some point. The line I had drawn in the sand was that if I had had to have a 3rd biopsy then I would move forward with a bilateral mastectomy with reconstruction.

The challenge was finding my team. I started with tons of online research and must say that breastcancer.org was my greatest resource. Thank you to all the women whom I will never meet, but who helped me during this time. I had been diagnosed with LCIS (as well as ALH, ADH and calcifications). My local breast surgeon often referred to my original breasts as "complex" and "busy". She was wonderful and I had a tough time making the decision to do my surgery out of town. Originally I had decided that I would do implants locally so that I could have my local breast surgeon do the surgery. Anyone who has walked this road knows how great the bond is between surgeon and patient. Doing it locally was also the easiest option. I wouldn't have to leave my kids for any extended time. Implants, although not my first option, were better than the latissimus dorsi option offered by the other plastic surgeon in town. Carving out my shoulder muscles didn't seem like a good idea to me.

Anyway, plan A came to a halt when my insurance provider said that neither of the local providers were in-network. Someone, much higher up, was looking out for me!!! I truly thank God each and every day for that roadblock. Next up was looking at my options in Portland. Another godsend was the plastic surgeon there who said I might be a candidate for the DIEP, which he didn't do any longer. According to my insurance provider no one in Maine did the DIEP, so in front of me was the gift. The gift of being able to look to Boston for my surgery.

Fastforward....I met with a plastic surgeon at one hospital and asked who she had trained with. I actually knew the answer to that question was Dr. Tobias at BIDMC, but wanted to confirm it. So, next up was a consult with Dr. Tobias at BIDMC. I was hooked when I met his nurse, Maria. Then I met him and knew this was the right choice for me.

Not everyone has the gift of time to research her options, so that was another gift I was given.

By the time I met with Dr. Tobias for the first time, my 3rd biopsy had come and gone. So, I was on my way to a bilateral mastectomy with DIEP reconstruction. BUT, I was still dragging my feet a bit. It's a huge decision when you are looking ahead. But when you are looking from the rearview mirror it was just a bump in the road.

A bump in the road? A year ago I never could have thought that. How could 14+ hours of surgery to remove and rebuild your breasts be seen as a bump in the road??? Today, as I type this that is how I see it. Obviously it is life changing, but for the better.

So, today I as reflect on my life a year ago, I want to thank God for getting me over some of the rough spots. I guess I will give you some advice on the rough spots for me. The first one was the phlegm that was left in my throat that I couldn't get out. It prevented me from being able to breathe, swallow, sleep, etc. It was awful. It was awful for two days. If it were to happen again, make them get it out!!!! The second rough spot was my sensitivity to morphine, which made me crazy until the pump was removed. If that happens to you, make them switch it out with something else.

I also want to give heartfelt thanks to my dear sweet husband. He was a saint and continues to be a gift in my life each and every day. Next my gratitude goes out to my sister-in-law, Dot. She'll never know how grateful we are that she stepped up and took care of our most precious gifts. And, of course, my friends who were with me every step of the way. Another gift I received was the gift of two DIEP Sisters, who were truly an inspiration to me as they made their journeys through cancer, treatment and surgery.

As you know my blog is coming to an end. I have Stage III on Thursday, March 31st, then a follow-up appointment. After that I will no longer blog, but will keep it out there for other women.

Hopefully my experience and my blog have been a resource and support to others who have faced some tough decisions in their journey to reduce their risk of breast cancer.

God Bless!
Love,
Joanie

Saturday, March 12, 2011

Wow - My Blog Won an Award!!

It feels great to be recognized; however the reason I continue to offer my blog publicly is to inform and educate other women who are faced with decisions regarding what to do, where to go and how to choose when it comes to breast reconstruction. Again, the most important message I can convey is to do your homework. Get multiple consults so that you can compare. Dr. Tobias at BIDMC was the final of five plastic surgery consultations I had during my quest for the best. Personally, I don't think I could have found a more caring, more responsive team for me anywhere else.

Thursday, December 9, 2010

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.

Friday, November 19, 2010

Nipple Update

So I have had the Stage II DIEP and everything went well. I even posted pictures and talked about the lipo, BUT I didn't mention anything about the nipples. There was one simple reason - I didn't really like them. Remember, I loved my circles. Really loved the circles. So when the nipples were added I thought they were too big and kind of ugly.

Well, two weeks have passed now and I met with Dr. Tobias and Maria yesterday. They reassured me that my nipples would shrink to about half the size they were after the surgery and that with the tattooing they will shrink even more. I had already noticed that they had shrunk in the past two weeks. Maria also mentioned that it isn't uncommon when all is said and done that people wished their nipples were a big larger. And that nipples can be made smaller, but not larger. I am totally onboard now.

One of my DIEP Sisters asked me to ask Dr. Tobias just how he made the nipples, so he kindly sketched it out on paper for me. This is exactly what he sketched (I later found this picture online). I can't say this enough, but Dr. Tobias is not just an amazingly talented surgeon, he is also an awesome person. He listens and takes his time during office visits. Never once have I felt rushed or that I was taking too much time - not even when I showed up with four pages of questions for my pre-op. Yesterday I met four new "DIEP Sisters" in his waiting room. Each and every one of them sung the highest praises for Dr. Tobias, Maria and his office staff. What we all seemed to appreciate the most is that during one of the most difficult times in our lives we are cared for by such a compassionate and committed team of professionals who treat us as if we are their only patients.

Today I am wearing a sports bra and love that I have nipples. I am very pleased that I did choose this route. There were a few times when I wished I had just kept my circles. However, my ultimate goal is to look whole and for my daughters to not be reminded of my surgery when they see my body.

Binder Update: I've been wearing both a binder around my waist and a surgical bra for two weeks - 24/7. Seems that I could have switched to a sports bra sooner. So, the waist binder can't go just yet. Two more weeks is what Dr. Tobias recommended. So, following Stage II DIEP the binder is required for a month. And it's a 24/7 requirement. Then Maria told me that I really should be wearing biking shorts or exercise shorts as well as it will help with contouring on my hips where I had lipo. Well, I couldn't get those pants on me fast enough. So today, let me count the layers on my body: undies, binder, spandex shorts and jeans. Thank God, I didn't do this surgery in the spring or summer.

Next up:  Tattooing

Friday, November 12, 2010

Moving on.....

It's been a week since my Stage II DIEP surgery and I must really be moving on since I have yet to post pictures of my awesome bruises. When I look back to even a year ago, I was living and breathing this whole bilateral mastectomy with DIEP thing. Should I or shouldn't I? I knew I wanted to reduce my risk of breast cancer, but wasn't so sure I could actually go through with a PBM + DIEP. And now, it's been what, maybe 8 months, and I don't even think about it anymore. The fears that were trying to hold me back are gone.

Since I didn't share any pictures of DIEP Stage II, I will do that now. It looks worse than it it feels. Dr. Tobias did lipo on my thighs, waist and belly and it looks fabulous. There is minimal bruising in the other areas, so of course I post the "worst" pictures.

I am still wearing two binders, one for my breasts and one for my belly. I have them on for just about 24-hours each day. I don't mind them and I feel safer around kids when I have them on, so it works for me. On Thrusday I will have my follow-up in Boston. Then I will be done until tattooing sometime in February.

When I say "moving on...." I mean that this chapter of MY life is coming to an end. No more surgeries, no more Boston medical trips, no more appointments (which I will miss), no more worries. But what isn't going to change is my commitment to other women who are considering the DIEP. I will be there 100% for anyone who has questions about this procedure, my medical team, my recovery, etc. If anyone has questions please feel free to ask me. I also have two Boston DIEP "Sisters" who have had invasive breast cancer and have done the DIEP who, I am sure, would be happy to help as well.

My blog will stay up, but my posts will stop in time. Officially I won't stop blogging until after my tattooing and on some of my 'big' anniversaries.

So, if you are reading this for the first or the fiftieth time, please know that I am only an email away if you have any questions or just want to reach out. I will always respond. My best to my DIEP sisters and to all the others who have yet to make this journey.

Love,
Joanie

Monday, November 8, 2010

Stage II DIEP - done!!

The build up to Stage II DIEP and my fear of anesthesia was actually worse than the surgery. I showered with my special soap and worried about coming out of anesthesia. I walked the 5 minute walk to the surgical check-in desk and worried about anesthesia and then I met with an anesthesiologist and let her know about my fears due to my past experience. My confidence level didn't change until a wonderful CRNA and day surgery nurse said that they had never seen anything like that happen on Day Surgery. My fears seemed to leave me immediately. That was the last thing I needed to check off my list. Okay, so I will be alright.

For those who may be reading this post first and have no idea what I am talking about, I'll make it quick. Back on March 29, 2010, I had a 14.5 hour DIEP Stage I operation. When I woke up I was combative and a danger to myself and the staff. They put me back under. Then when they brought me out I couldn't breathe due to mucus or a large phlegm ball in my throat. Between my inability to breathe and a newfound sensitivity to morphine I had a rough two and a half days when I saw and heard things that weren't really there and thought I was just going to die. Anyway, when the phlegm ball disappeared and the morphine pump was removed I became myself again, but not without concerns. My concerns were for future surgeries.

So, now I know that future surgeries will be okay. I wore an orange bracelet that warned the staff that I had an allergy/reaction to a medication, in my case morphine. Whatever everyone did, it worked. This time I woke up just like everyone else does.

Back to Stage II. Dr. Tobias came in about 6:40am and marked me up with his famous purple marker. He drew circles in all the areas where he would do lipo, fat transfers, revision of my incisions and nipple reconstruction. He was very focused. After he left, the CRNA came in and put in the IV line. We took some pictures, then she asked if I was ready for the sleeping medicine. By now I wasn't worried at all. I knew I was in the best of hands and was very ready to have this surgery behind me.

Waking up was very different than Stage I. I just kind of woke up. It's all a bit foggy, unlike last time. They offered me some juice and crackers, then I think they moved me to another area. Again, this is very foggy.
But I do remember feeling fine.

Once I got to the new area, Mike arrived along with Sara and her mom. For those who don't know Sara, she had the DIEP on October 25th. Sara, along with Kristine, who had the DIEP on September 8th, have been my support system. Last week were all able to meet in Boston (see earlier blog post). Anyway, the nurse sent Mike down to get the car, while Sara and Barb stayed to help me get dressed. I might still be there if they hadn't been there to help. There didn't seem to be as much concern and follow-up on the nurse's part following day surgery as there had been following DIEP Stage I. Probably for good reason. This procedure was only 3.5 hours long and relatively minor in comparison.

I was given the folder with post-surgical instructions and two prescriptions. We should have been told to FILL THE PRESCRIPTION IN BOSTON, since when we got back home to Maine we couldn't get it filled until Monday. They had to call Dr. Tobias' office to get approval to fill it. As it is I am still waiting for WALGREENS to call me back after I left another message there this morning. Not a big fan of Walgreens about now. Because I couldn't fill the pain med presription I went light on the pain meds that I did have. Unfortunately I didn't get ahead of the pain and paid the price. For the first time pain hit about a 4/10 and the first time around it never went above a 2/10. My advice, fill your prescriptions in Boston and take them.


I've gone on too long with this post, so will post again later about my actual recovery.

Wednesday, November 3, 2010

DIEP - Stage II on Friday

We will leave tomorrow morning for Boston. I am very appreciative to my brother and his wife for stepping in to take care of the girls. Since this began I don't know what we would do without our families to help us out. Both girls are looking forward to seeing Uncle Tommy and Aunt Beth.

I know that JieJie and MeiMei are scared. The hardest part of any procedure, whether you are looking at 14+ hours or 3 hours, is leaving my kids. They have been through so much in their short little lives that it pains me to put them through watching us leave - again. They only thing we can tell them is that I will be okay and will be home soon.They are very good about creating their own prayers so I am sure that in their own way they will be right there with me in the OR.

Hopefully Mike will be with me in recovery, so we probably won't be able to post any updates. I have promised calls to my DIEP Sisters - so you will hear from us. Please prayer for a smooth, uneventful, phlegm-ball free operation.

Sunday, October 31, 2010

Stage II Prep & Tribute to "My Medical Team"

This is me with Dr. Tobias one week pre-op for Stage II surgery at Beth Israel Deaconness Medical Center in Boston. He is going to 'fine-tune the canvas'. What that means is that he will smooth out the 'dog ears' or in my case 'mouse ears' from the abdominal incision. He will also lipo out about 200 cc's of fat from my hips and belly. Once he gets that he will deposit in into the spots where the breast tissue was removed above my breasts. And he will reconstruct my nipples.

As you may know, I've been on the fence about nipples. Now I am on board. I was able to look at their 'book' and saw that they looked very natural. And my goal is for my breasts to look so natural that even I will one day forget that they are not my originals. When I am done with Stage II and later Stage III, I may not have any more reminders of my surgery, but I will never forget the talented professionals who have crossed my path.

Obviously at the top of my list is Dr. Tobias. He is everything you would ever wish for in a surgeon - a perfectionist, personable, talented, committed, funny, understanding, patient AND he knows how to hire the best staff in the world. It is without a doubt that Maria was meant to be his nurse. She is incredible!! She is always available when I have questions, she's everything that Dr. Tobias is, in addition to feeling like a girlfriend. The team wouldn't be complete without Malika and Jean. They always seem happy to see me and really make my visits to their office feel like 'old home week'.

Although, he is no longer in Dr. Tobias' office, Dr. Mike Curtis was a real asset. I understand that he is now offering the DIEP in Syracuse. I will always remember how understanding and accepting he was when I was still under the effects of my morphine sensitivity and things were very crazy. If anyone reading this isn't in a position to travel to BIDMC in Boston, then I would certainly suggest meeting with Dr. Michael Curtis in Syracuse.

Stage II is still surgery, but it doesn't come with the same anxiety that Stage I brings. Of course, I am still scared about going under and coming out of anesthesia. I am praying that I don't have a phlegm or mucus issue this time. Not being able to breathe when you come out of surgery is a pretty awful feeling. Add to that the spinning sensation and the boots that put pressure on your calves. Feeling like I was on the Ninja Turtle ride at Storyland and having people grabbing/chasing me was pretty terrifying. At pre-op I met with a very understanding anesthesiology resident who told me that that really shouldn't happen again. Hopefully they will suction everything out this time. Plus I am trying NOT to catch a cold before Friday!!!

My recovery this time will be shorter, but it is still recovery. Looks like it will be a week of recovery with 2-3 weeks of no heavy lifting. I needed this reminder from Dr. Tobias since I have a tendency to try to bounce back to my normal life maybe a bit too soon. I don't want to pop any stitches.

Hopefully I will post again before Friday. It's a busy week trying to get ready for surgery.

Monday, October 18, 2010

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!!!

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 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!!

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.

Monday, August 23, 2010

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.

Wednesday, June 16, 2010

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.

Sunday, June 13, 2010

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.

Friday, June 11, 2010

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.

Monday, June 7, 2010

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.

Thursday, June 3, 2010

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.

Tuesday, June 1, 2010

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."

Thursday, May 27, 2010

Nipples

Two years ago did I ever think I would create a blog post entitled, "Nipples"? Not in a million years. Life has a way of throwing curve balls, so today I thinking about nipples or actually the lack of nipples.

At my last post-op appointment with my PS, I told him that I would like to have nipples created as well as some touch-up liposuction at my next surgery in November. Stage II typically is the nipple creation stage, so I have been planning on doing it. Until now. Well, let me tell you what has changed.

This week it has been so hot here in Maine, so I have been wearing all those tank tops I bought for post surgery. I have been going without my bra. At this point the only bras I have that fit are the mastectomy bras and I didn't want the extra weight or the binding feeling. AND I LIKE IT. Yesterday I even picked my daughter up at school this way and it was such a freeing feeling. Prior to surgery I never would have gone without a bra if I was going to be seen in public.

So this is where nipples come in. I don't have any, so I don't have that awkward appearance of going bra-less and having nipples show through. Even in cold weather or if I get a chill I don't have to think about my nipples. Very very freeing. Not that I thought about my nipples at all before the surgery, but after the surgery I have thought about alot of things I never had before.

Here's my dilemma. Do I have the PS reconstruct new nipples, which will always be semi-erect (without any sensation) or do I go with a 3-D tattoo that looks like a nipple? As a traditionalist I always figured I would do the typical Stage II nipple reconstruction, but I am leaning strongly toward the tattoo. The thing that is tipping the scale is the freedom to go bra-less when I choose to. If I go with the nipples then I would not walk around bra-less in a tank top at public events. Not that there is anything wrong with that, but as I said I am a traditionalist, so I just wouldn't do that.

Plus, as a new 38A, I am limited. I've tried all the big chain stores for bras that fit my new body, but it is an exercise in futility. So, luckily I have already been fitted with mastectomy bras, which are great. They give me the shape that I have always lacked and they are comfortable. But on hot days, particularly when I moved to camp, I like the simplicity. And putting mastectomy inserts into a bra just aren't my idea of simplicity.

As I searched the internet for a photo for this posting, I came across lots of tank tops and camis with shelf bras built in. I wonder if that would make the whole semi-erect nipple a mute point. I will have to try one to see, but I am still leaning toward the 3-D nipple. If anyone of my readers have dealt with this issue I would absolutely love to hear from you.

Today I am cleaning. All that clutter I talked about last week, well it's still here. I was working on a special project that consumed me for a few days, but now I am back.

Thursday, May 20, 2010

The New Normal....

The new normal is very much like the old normal. My life is full of clutter, disorganization, deadlines and errands. But today I hope to take charge of some of those things. Caffeine will need to be my co-pilot.

Speaking of caffeine, we have a long and complicated relationship. When I was 32 I had my first breast lump and mammogram. All was fine. However, during my consult with the nurse two things stood out. One thing I remember (now that was almost 20 years ago) was that if I were to get breast cancer it would most likely be in the opposite breast as my mother. Why she even mentioned that I don't know, but it is one of those things (probably a black pearl) that stuck with me. The other was the link of breast lumps to caffeine. Even at 32 my breasts were cystic. So, after feeling like I had dodged a bullet I gave up caffeine. I would do whatever I needed to do to reduce my risk of breast cancer.

For 12-13 years I didn't drink coffee. I took a couple of days to get over it, but then it was done.  No more caffeine. Then I became a mom for the first time on August 27, 2003 in Guangdong, China at 2pm. Jie Jie was not a sleeper and I could barely function. So, it was back to caffeine. Yes, I felt guilty and I worried a bit, but was getting annual mammograms so didn't spend much time obsessing on it. I needed the caffeine.

Eventually I weaned myself off the caffeine, but would occassionally start again, but not in a big, addicted way. Until now. Heading into surgery I knew I couldn't have caffeine (no coffee or chocolate), so I gave it all up several months before surgery. The caffeine constricts blood vessels and since my whole reconstruction was about reattaching blood vessels it is better to have as much blood flow as possible. But, a couple of weeks ago (7 weeks post-surgery) my energy started to dip big time around 9-10am and again around 2-3pm. So, I went back to having a couple of cups of coffee in the morning and I am now addicted. I love my coffee. And I don't feel any real twinges of guilt. So when I finish this post I will go downstairs and enjoy a big cup of coffee on my patio.

But, back to the original reason for my post. Life is back to normal. This was something that I had lost sight of as my surgery approached. Thankfully I was reminded by a friend (Jen) who told me a couple of weeks before my surgery that I would be coming back to my life. She said that truly nothing would change. Yes, I would have surgery, but that I would recover and would get back to my family, my responsibilities and the clutter. She was 100% right. Everything is the same. My new normal is very much like my old normal. And I am off to prepare to tackle the clutter, armed with my caffeine!!

Wednesday, May 19, 2010

The Ken Doll Effect

Not sure if anyone else has this or knows anything about it, but I have just learned the term, "Ken Doll Effect". Some of you will laugh, others will understand. After the DIEP your lower skin is pulled up pretty high creating a bump. Other than showing a picture (which I am not going to do) I can only describe it as a bump, very similar to the bump in the same area on the Ken doll.

Since coming home I have felt like I have two parts to my belly now. One is the Ken doll part and the other is my stomach, but higher. Then there is the line that separates the two. Above the line, if I eat, it gets bigger. Well, not if I eat, but rather if I eat ALOT. The bottom part doesn't really change. I am wondering if this will smooth out or ever feel like it is just one belly. My husband has been my workout coach, but I hate sit-ups. I am wondering if I am destined to a lifetime of endless sit-ups to get rid of it.

Yesterday I was at a school picnic for Jie Jie, and one of the moms was telling me that she had had a tummy tuck after her second child and had the same thing. She said that after about six months the top part of her belly flattened out and the incision become less indented. I am hoping that that will also happen, but I don't know. I can live with it the way it is, but I would certainly like to look a little less Ken-like. I don't know if it is still swelling - it's been 8 weeks so that doesn't seem right, but I don't know just how long swelling lasts.

I put this out there for two reasons. One reason is to detail my recovery in order to help other women and the other is to hear from other women to see if this is something that they have dealt with. So, if you've experienced the Ken Doll Effect and the two bellies, I would love to hear from you.

Monday, May 17, 2010

Post-Mastectomy Bra Fitting and Follow-up in Boston

Last week I had lots of things going on, not the least of which were my follow-up visits with both the breast surgeon and the plastic surgeon. Additionally my computer crashed - that's the reason I wasn't able to post any updates - my work has picked up again and I was fitted for post-mastectomy bras. All of these things made for a hectic week.

Life is truly back to normal. Let's start with the bra fitting. I requested this via my PCP. It was a wonderful visit with an old friend. I knew her back in the days when I was the Chair of the Race for the Cure. Being fitted for a bra for my new breasts was informative. It seems that for years I have worn the wrong size bra - or I have grown. That could have happened after all my efforts at feeding my flap (more on that in a later post). With my new breasts I am a 38A. There are very few places you can find a 38A bra, so this service was great. Even though I have breasts (ones that I am very proud of and ones that I truly earned), it still felt good to add a prosthesis to a 38B bra and to some bathing suits. These post-mastectomy bras are comfortable and look good. With them I am actually bigger than I was when I started all of this.

The next day I was in Boston to see my doctors. With Dr. Tobias we discussed what Stage 2 surgery would be all about. Basically a little bit of lipsuction (I was hoping for more!), a little tuning up of the dog ears on the ends of my abdominal scars, and a bit of filling in of the spots where the breast surgeon took tissue above my breasts. It all made sense. I thought he might be able to do some more lipo and plump up my breasts a bit, but that's not exactly necessary according to the doctor. Next I was off to see the breast surgeon. She did a breast exam, which wasn't uncomfortable at all. I thought that since my breasts are quite numb that I might find it uncomfortable, but I didn't. After that she cut me loose. My annual breast exams will be with my local breast surgeon. I was surprised, but grateful that I don't have to make a 4-hour trip for that.

When I told her that I had been fitted for bras with the post-mastectomy bra fitter, my breast surgeon was surprised. She said that I should just go to Victoria's Secret or some other places for bras and bathing suits since the whole point of the reconstruction was to avoid a prosthesis. I was surprised by her reaction. But, we headed out to do some shopping so I figured I would see if I could find something that would fit. My old bras and bathing suits don't fit so I had my doubts.

Well, after a few hours of trying on clothes (without my 38B bra on) I found a couple of bathing suits that worked for me. But, I couldn't find a bra to fit. They don't make 38A padded off the rack at Sears or JC Penney. When I got home I did go online to Victoria's Secret and saw that they do offer a 38A padded bra for $45. I won't order one, but when I get to a Victoria's Secret store I will try one on. In the meantime I am very happy to have the bras from the bra fitter as well as some sports bras that fit.

Now I have some versatility in my bathing suit wardrobe. Remember, I live at our camp in the summer and spend lots of time on and near the water. Right now I have bathing suits for watersports like waterskiing and tubing (non-prothesis) and others for socializing on the deck (full cup 38B). I am happy. Probably not all people will need or want both the non-prothesis bras and bathing suits, but it works for me. I am wearing the Full 38B in the picture!!!

Monday, May 10, 2010

Offical Recovery is Over - Back in the Saddle


My official recovery is over. Today marks the start of Week #7 and since the typical recovery is 6 weeks, it is now over. I realize that I am one of the lucky ones. Other than the bad spell with anesthesia and morphine, my surgery and recovery have been uneventful. I like that. Life is back to normal. Well, almost normal. Wearing a sports bra under work clothes just doesn't cut it. But, I am lucky that I have breasts and that they feel/look quite normal. Well, other than they are numb. Unless they are being touched they feel normal. I will take this over the roller coaster of biopsies and mammos and MRIs.

Today was my first official client appointment. As you know, I work for myself as a Certified Career Management Coach, so today was the first day I started seeing clients again. First I pumped myself full of coffee - high test. Up until last week I was reluctant to drink caffeine even though Maria and Dr. Curtis said I could do so way back during Week #2. I held off, but now I am back. I love my coffee. For years I didn't drink it due to its association with breast lumps/soreness, but I don't have to worry about that anymore.

Plus, the caffeine was just what I needed to get going today. I've had great appointments with clients today. Felt like I was back in the saddle. Now, to the computer to create their resumes. But first my blog. Since starting this blog I have not written much at all about my work. So, let me tell you that years and years ago I quit my 'secure' job to start my own career counseling/coaching business and I love it. I love my job. I love career coaching. I love resumes. I love job search. I love working for myself.

Wow, the caffeine has truly kicked in. It's been six weeks since I even felt like doing work. Even if my body felt fine, my brain was still a bit groggy. Details were fuzzy, even a week ago. But now, I am into the details and excited about creating some exciting, detail-oriented resumes today!!!

In the beginning I thought I would stop blogging after Week #6 and start up again right before Stage 2 surgery in the fall, BUT blogging makes me happy, so I will continue even if it is sporadic. Tracking my progress makes me feel good. Seeing how far I have come in a year makes me feel great. In a future post I will go back to where I was a year ago as I started down the road to my PBM with DIEP and how it feels to look back.

Time is speeding by and work awaits me.....

Friday, May 7, 2010

ACS - Making Strides Against Breast Cancer

Maria, my nurse from my plastic surgeon's office, is forming a team for the October 3, 2010 Making Strides Against Breast Cancer walk in Boston. The team name is Boston DIEP. If you are interested in walking or donating please click here, I support the Boston DIEP team! THANK YOU!

I donated online and it was very easy. I clicked on Maria's name so that it will be credited toward her fundrasing goal. I love fundraising and if there is any way that I can help in the fight against breast cancer and the promotion of early detection I will do it.

About twelve years ago I was one of the founding members of the Maine Race for the Cure and the Maine Affiliate of the Susan G. Komen Foundation. We were instrumental in getting the RFTC off the ground and building a foundation for what is today a two-city (Bangor and Portland) event held in September. If you have never participated in one of these events you really should.

As Race Chair, I traveled all over the country to learn and to particpate in races. There is nothing like the sea of pink you see when you are walking. It always brings tears to my eyes. Those experiences were actually a factor in my decision to pursue my prophylactic bilateral mastectomy (PBM). When you see women fighting for their lives because it wasn't found early, then you realize just how important early detection is. Although my decision to have a PBM was difficult, I realized just how lucky I was to have the option of reducing my risk of breast cancer before it could take hold.

So, whenever I have the opportunity to support friends who are raising money for breast cancer research, education or treatment, I find ways to give. Please help.

Wednesday, May 5, 2010

Week 6 - Day 3


This is my 100th post. When I started this blog about a year ago, I never thought I would go public with it. It was just my little journal and way for me to sort out my feelings about a having a huge surgery or not. Now, less than a year later, I am pleased to share my blog with people all over the world. Even though there are some very hideous pictures of me (see Week 1/Week2 posts), the benefit of sharing my experience outweighs the embarrassment of having the world see me in a not so good light.

A few months ago, I was scouring the internet looking for blogs of women who had walked this road before me. I was desperately trying to find someone whose experience paralleled mine. That someone is Teri over at http://www.myblip.wordpress.com/. About six weeks before me she had a PBM with DIEP and chronicled her story on her blog. One night I found her and connected immediately. Amazingly my stress started to dissipate almost immediately. She wrote about what each day, then what each week was like. I began to feel strong, to feel like I could do it too. As I began my recovery, I went back to her posts to see how my recovery compared to hers. Better yet, she would email me words of encouragement. She is out west and I am about as far east as you can get, but we still became friends. We may never meet, but I can assure you I will always remember her and be grateful to her for her support and encouragement.

I would like to publicly thank all those women who have reached out to me to support me and to share their breast cancer experiences with me, but I won't name them. They don't have blogs and may not want their names posted. So, I will say that they are old old friends, new friends, friends from college, friends from my town and online friends. All of you held a piece to the puzzle I was trying wrap my mind around as I moved toward my surgery date. As the date got closer the puzzle was coming together, but there were still missing pieces. At that point there were a few key connections that were made in person and via the telephone that were instrumental in pumping me up for surgery. I will forever be grateful to each and everyone of you.

And, how do I thank my non-breast cancer friends and family? The cards, the flowers, the meals, the trip to Reny's, the visits, the babysitting.....where do I even begin to thank you? You will always hold a special place in my heart. Thank you.

Maria and my medical team were also instrumental in getting me over the hump. On my pre-admission visit to Dr. Tobias, I had four pages of questions. Maria very throughly answered each and every question. She put me at ease. That was a key moment for me. She did this with confidence and humor. She also connected me with another person who had had the same surgery for the same reason just a few months before me. Again, a key piece to the puzzle.

So, for my 100th post, I just wanted to recognize all the people who were instrumental in getting me to where I am today. It was truly a team effort.

However, the one key person I can never thank enough is my Dear Husband. You've read the posts, so you know just what he did to support me before, during and after my surgery. We can now laugh about some of the 'crazy' things that happened (or didn't really happen) in the hours after the surgery, but there were moments of sheer terror for him and he never let me know at the time. He was steady and supportive and loving every minute of every day. I love him and will forever be grateful for his love, patience, understanding and support.

Tuesday, May 4, 2010

Week 6 - Day 2

As I have mentioned before, I am back to normal - EXCEPT - I can't snap my pants. This is a problem since everything I wear has a snap and a zipper. And the snaps close right at my incision. So today I am wearing some capri pants with my zipper undone, but with a jacket over it. Plus I am wearing my binder which makes it hard to zip and snap. It's not a bad dilemma, but it is a dilemma. Do I go out shopping for some sun dresses that would be wonderful if the weather cooperates? Or do I try to find some elastic waist pants that I can roll down and never wear again when I am totally recovered?

Mike and I are headed to Boston for some follow-up appts next week so maybe we can take some time to shop. I know he would just love that!!! Well, he would love it if we were shopping for golf clubs. I also need to check into bathing suits.

Since I am not having the second surgery until fall, I need to figure out how to live with my body as it is for the next few months. At home I can do just fine with what I have, but when it comes to work clothes I need help. Maybe I will go out around here today to see what's available. Hopefully I will be pleasantly surprised.

As far as recovery I am doing great. What I notice most is that I am thinking much more clearly than before. I hadn't realized that things were foggy, until things cleared up. Maybe there's still some of that nasty anesthesia floating around in my body somewhere.
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