Well, it's been almost a month since my final follow-up appointment for tattooing. I've been dragging my feet with my final blog post. It's just hard to say good-bye. Although I didn't decide to have a bilateral mastectomy with DIEP reconstruction to make friends, that's what I did. So, writing my final blog post feels like I am leaving a part of me behind. Yes, I did leave my breasts behind, but that's not what I mean.
Before I close, let me just tell you that this journey I have been on for almost three years has been a blessing in disguise. First and foremost, I reduced my risk of breast cancer to 0-2%. I can live with those odds!! Secondly, I made the right choices in procedure, medical team and support system. With those decision I actually found a whole new circle of friends.
The DIEP is not for everyone; however as I type this post I can honestly say that I rarely think about my breasts. They feel so much like my originals that I don't even notice that they aren't. My medical team was absolutely the best choice I ever could have made. I don't think they come any better than Dr. Tobias and Maria at Beth Israel Deaconess Medical Center. I have absolute trust in them. And for support I had a core group of family and friends who were beside me the entire time through the decision making, surgery and recovery. I chose not to tell everyone and was quite selective in who I did tell. The key to the inner circle of support was if I felt someone would truly be there for me and my family. I chose well. So thank you!!
Regrets? NONE! The surgery is now in my past and every once in awhile I hear myself saying that it was 'the best thing I ever could have done for my family'. I truly believe that, but I also remember being in the PACU wondering if I was going to die (from the phlegm ball and morphine sensitivity). But all these months later those are fading memories.
One thing that will never fade is my desire to continue to help other women who are facing the same decisions that I faced. My DIEP Sisterhood continues to grow with Sara, Kristine and Laurie. All of us are different ages and were diagnosed at different stages; however we found each other and have been able to support each other through surgery and recovery.
As my DIEP Sisters know, I am always willing to reach out and talk or email anyone who wants or needs support. People from all over the world visit this blog, but it is the rare person who reaches out. So, to all those women who read my blog, but never reach out, I wish you the best with your decisions and just know that I am an email away!
There is one person I owe so much gratitude and that is my husband. Now that life is back to normal I sometimes forget just how supportive from Day One. He stood by me, he didn't complain when I spent hours and hours on the computer researching my diagnosis and my options. He took care of the girls when I was obsessing on 'just one more thing I need to research'. He was beside me on the decision making rollercoaster. One day "I'm in" and the next "I'm not in". He took time off for every doctor's consultation, appointment, follow-up, etc. He stripped my drains gently. He told me I looked great when I felt awful. He got me up exercising when he knew I was ready. He encouraged me every step of the way and truthfully if he hadn't been my side, my choices may have been very different. He is my unsung hero!!
I am at peace and excited about the life I have ahead of me. I've realized that it's not the problems you face that define you, but the way you face your problems.
Wednesday, May 25, 2011
Tuesday, April 5, 2011
Stage III - Tattooing is complete!!
So last Thursday I had Stage III with Dr. Tobias and Maria in Boston. This was the first time that I hadn't done any research into what to expect.
Tattooing just seemed like the last step and would be the step that would make me whole again. Remember, all along I have been happy with the outcome. After Stage I, it was the circles, after Stage II (a few weeks later) I was happy with the nipples, lipo, etc and now after Stage III I am happy to look whole. Of course I am looking at myself in the mirror from a distance right now so I can't see the 'wounds'.
Up close, it's still a bit icky. I am wearing wound care bandages and gauze bandages under my bra. They look better now than they did last Thursday when they were just bloody nipples!! I hadn't realized just how tattoes are made. That's the lack of research. I knew I was still moving forward with it, regardless, so I didn't invest any further time or energy into it. I figure I invested a year and a half into researching my decision to have the PBM + DIEP that even a little discomfort wasn't going to be a big deal or hold me back. Plus, I absolutely trust Dr. Tobias, so that helps alot when moving through the Stages of DIEP.
Here's the play-by-play of Stage III. First you select your 'colors' from a palette. I deferred to Dr. Tobias who pulled my original breasts up on his computer and created a blended color to match my original color. Next, he tested the site to see if I would need a local. I did. Other than a few needle pricks from the local, I didn't feel a thing.
Most of the procedure, which was 2 hours long, I just talked with Dr. Tobias and Maria. I was able to ask lots of questions about my Stage I surgery and the 'issues' that surfaced way back then. I had no idea how he was creating the pigment for the areolar, but afterwards I got a good look at the bloody nipples and figured it out. Lots of needle pricks.
So, now my job is to keep them free of infection and not to let them scab up and get pulled off with the wound pads and guaze. A little Neosporin helps. I've had to take an antibiotic for the past few days and have one more day to go. Am also taking Tylenol since they seem to be a bit tender/sore.
I have one more follow-up to Stage III in late April, then I will be totally done with the DIEP.
Before I end my blog I will post about my reflections a year later. Then I will turn my blog into a book, which I will hold near and dear. This blog has been my 'friend' for a very long time now. It has also brought me a new 'sister', for which I will be forever grateful. This blog was there when I needed to air my feelings, but didn't have any place to do that. Blogging was a way for me to process what was going on in my head and in my heart. It was a way of seeing in black and white just what I was dealing with.
To anyone reading this, thank you for visiting. I hope that my blog has been helpful to you on your DIEP journey. My heart goes out to each and every one of you!
Tattooing just seemed like the last step and would be the step that would make me whole again. Remember, all along I have been happy with the outcome. After Stage I, it was the circles, after Stage II (a few weeks later) I was happy with the nipples, lipo, etc and now after Stage III I am happy to look whole. Of course I am looking at myself in the mirror from a distance right now so I can't see the 'wounds'.
Up close, it's still a bit icky. I am wearing wound care bandages and gauze bandages under my bra. They look better now than they did last Thursday when they were just bloody nipples!! I hadn't realized just how tattoes are made. That's the lack of research. I knew I was still moving forward with it, regardless, so I didn't invest any further time or energy into it. I figure I invested a year and a half into researching my decision to have the PBM + DIEP that even a little discomfort wasn't going to be a big deal or hold me back. Plus, I absolutely trust Dr. Tobias, so that helps alot when moving through the Stages of DIEP.
Here's the play-by-play of Stage III. First you select your 'colors' from a palette. I deferred to Dr. Tobias who pulled my original breasts up on his computer and created a blended color to match my original color. Next, he tested the site to see if I would need a local. I did. Other than a few needle pricks from the local, I didn't feel a thing.
Most of the procedure, which was 2 hours long, I just talked with Dr. Tobias and Maria. I was able to ask lots of questions about my Stage I surgery and the 'issues' that surfaced way back then. I had no idea how he was creating the pigment for the areolar, but afterwards I got a good look at the bloody nipples and figured it out. Lots of needle pricks.
So, now my job is to keep them free of infection and not to let them scab up and get pulled off with the wound pads and guaze. A little Neosporin helps. I've had to take an antibiotic for the past few days and have one more day to go. Am also taking Tylenol since they seem to be a bit tender/sore.
I have one more follow-up to Stage III in late April, then I will be totally done with the DIEP.
Before I end my blog I will post about my reflections a year later. Then I will turn my blog into a book, which I will hold near and dear. This blog has been my 'friend' for a very long time now. It has also brought me a new 'sister', for which I will be forever grateful. This blog was there when I needed to air my feelings, but didn't have any place to do that. Blogging was a way for me to process what was going on in my head and in my heart. It was a way of seeing in black and white just what I was dealing with.
To anyone reading this, thank you for visiting. I hope that my blog has been helpful to you on your DIEP journey. My heart goes out to each and every one of you!
Tuesday, March 29, 2011
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
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
Saturday, March 12, 2011
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.
