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.

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!!

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.

Week 2 - Day 2

Last Week:  Okay so last Tuesday was rough. I will post a picture from that day last week when I didn' think I would make it through the day - a couple of things were happening. First, I apparently have a sensitivity to morphine (long story) and I had a phlegm ball in my throat that I couldn't get up therefore I couldn't breathe. Not being able to breathe led me to not being able to sleep. Then between the lack of sleep and my sensitivity to morphine I had some pretty major fears. Mike just said that I did sleep on and off, but had such vivid dreams that I didn't think I had slept. Not a pretty picture. Here is a picture from last Tuesday morning in the PACU unit. Wow, as I look more closely at this picture I can remember everything about that day. The good news is that at least now I KNOW I have a sensitivity to morphine and with the best docs in the world we can work with that. I still another procedure coming up, but not for a few months or longer. The next procedure is shorter - maybe 5 hours, not 14 hours.

This Week:  Today is Tuesday, April 6th. I got up at 6am and got myself out of my own bed!!! Helped a little bit getting JieJie and MeiMei ready for school, then went to school to help out in the library. My regular day to volunteer is Tuesday and I wanted to see the Librarian, who has been so tremendously supportive throughout this journey. Her mouth dropped open when she saw me!!!! I do my best to tuck my drains out of sight, but that's pretty tough to do. Although I could help check books in, I still don't feel comfortable having lots of kids around me. One pull of the drain and who knows what might happen!!! Better not to test it. I was so happy to see everyone!! Here is a picture of me walking JieJie into school this morning. When we came home, Mike cleaned and drained my drains. Here is a picture of the drains from my perspective. The other picture is the fluid in the cups coming from each drain. I will get one or more drains out on Thursday!!!   

You remember the Feed the Flap party? Well, we are certainly benefitting from all the wonderful meals that we were able to 'seal and save' after the party. Last night it was Marcia's Beef Stew. Very Yummy. It's amazing how good it feels to eat food prepared by someone else when you are recovering or taking care of someone recovering. Thank you Marcia.