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, 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.
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