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

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.

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

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

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.