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

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.