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.


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.

Monday, May 3, 2010

Week 6 - Day 1

Every Monday I am so excited. Last week it was "Four weeks ago I was in surgery....". This week, it's "Five weeks ago I was in sugery...." I don't know how long this will go on, but I am thinking that after this week when Monday comes along I probably won't be focusing on the surgery date. In my mind I have the 6-week recovery in my head and next Monday will mark the 6-week date.

At this point in time I really don't have any pain, except at night. It's not really pain, but again, discomfort. It feels like a thera-band being pulled across my chest. Tightness. I am taking only 2 Tylenol before bed now and nothing during the day (most days).

Every morning (7 days/week) I am exercising for 45 minutes. It's keeping me in shape. My arms still need to do more stretching. It's easy to run my fingers up the wall, but when laying on my back with my shoulders over my head I can really feel the stretch. I need to do more of those stretches to really get the mobility back. Plus, while I am on my back, I am going to try some crunches today. Everything seems healed so I don't think I am going to pop a stitch.

Speaking of stitches. My 38cm belly scar is looking pretty good. The scabbing and glue is still coming off. My designer belly button is looking great. I had a few concerns a week or so ago, but now it's looks normal and very nice. Great job Dr. Tobias!!!  My breasts are healing well. The scabs/stitches are pretty much gone now. They are still numb and will stay this way for a while or longer.

Now that some of my belly sensations are coming back I can focus more on what the sensation of my breasts is like. Before I had the surgery I had heard that it was a bit like Novacaine. Now, I agree. If you've ever had Novacaine and felt your cheek on the outside - kinda poking it. Well, that's what it feels like when I poke my breasts. I don't know if that will change. But I must say, that that is a small price to pay for the reduction in my breast cancer risk.

That's my post for today. I am not sure how much I will post this week. I hope to put some time into completing MeiMei's adoption video/lifebook. Then, I plan to revamp my website - an ongoing goal.

I love to hear from you. So feel free to email me at bethisrael207@live.com.

Saturday, May 1, 2010

Week 5 - Day 6

Today was another great day. Down to one round of Advil and two rounds of Tylenol. The real test came today. As you can see I passed. It was really important to me to be able to ride my bike and I did it today. No pain. No discomfort. Joy!! I loved it. My ride was short, but absolutely perfect!!

On the family side, JieJie had her first official riding lesson this morning. She had fun, so we will most likely sign her up for a bit of horse camp when she gets out of school. It feels good to see her so happy. I also want to sign her up for an art camp since she is so creative and happpy when she is doing art.

Then we will be off to camp for the summer without high speed internet. We actually have dial-up service. After a few years of going without internet, I decided that I could live with dial-up - so much better than nothing at all. Being isolated on a beautiful lake in the easternmost county in the US is great, but also lonely, so being connected is great.

JieJie's first communion is coming up at the end of the month, so my wonderful and thoughtful aunt stopped by to drop off a gift for her. I love my aunts. I am so lucky to have my aunts and my girls are so very lucky to have great aunts. They really are GREAT!!
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