I have not posted anything in a while, mostly because there hasn't really been anything new to report. Until now!
My original plastic surgeon had referred me to a new surgeon in hopes that a product called alloderm would benefit my reconstruction. Click here for more information about ALLODERM At this point I was still hell bent on not giving up on the implant method of breast reconstruction. I didn't feel that we had exhausted all options yet for success. And all of the cons re: the DIEP FLAP reconstruction still existed, such as greater risk of clotting, lengthy surgery, many hours under a general anesthetic, grueling recovery, possible loss of muscle mass etc. etc.
I left the new surgeons office with a wonderful sense of new hope! She felt that she could alleviate my discomfort and give me a more satisfying set of Foobs.
I signed all of the consent forms and was told that I would receive a surgery date approximately 6 months down the road.
Well....6 months came, 7 months came, 8 months came and then I decided to phone her office to see if I could hurry things along. When I called her office, I got a voicemail. I left a detailed message explaining that I had been waiting 8 months for a surgery date and was getting really anxious. I asked if they could return my phone call and give me even a general idea of when I might go under the knife again. I have a full time job, 3 children (one with ASD), a dog........ well you get my drift. There are a lot of things that must be organized and planned for well in advance.
Guess what happened next?
I get a voicemail message "Hello this is Dr. Zhong's office calling. We are sorry to inform you that Dr. Zhong will be going on maternity leave in January 2015 and therefore will only be performing immediate reconstruction on patients with active cancer. Thank you for your understanding"
That was it! No "please call our office so that we can discuss other options" No "please call our office so that we may refer you to another physician" NOTHING
I was shell shocked. Heart broken and hopeless once again. In no way do I feel that I am more of a priority than women with active breast cancer. However......
I had my bilateral mastectomy in April 2013. I was supposed to have immediate reconstruction with permanent expander implants but that didn't go exactly as planned. My husband and I attended weekly outpatient appointments for saline fills for months, then we waited and we waited to let my body heal, then I underwent an attempt at nipple tattooing and reconstruction, that failed. The nipples were created by skin grafting using the excess tissue on my breast, and they peeled right off at my first post op appointment when we removed the gauze. Then we waited again and waited to let my body heal some more. Then I underwent a capsulectomy and fat grafting. Then we waited and waited some more. Then I underwent another capsulectomy with more fat grafting. Then we waited again. My implants once again, became incapsulated, they fell out of pocket, they drifted very far apart and became very hard and painful. Finally I asked for a second opinion and I was referred to Dr. Zhong at UHN because of her experience and access to the acellular dermal matrix called alloderm. I felt like alloderm was my saviour.
After my bilateral mastectomy, I grieved the loss of my breasts. More so than I could ever have imagined. Perhaps because I was expecting "immediate" reconstruction and I now know all too well that there really is no such thing. Due to the trauma I experienced in the operating room that day, the horrible sight I was exposed to each day in the mirror, the ongoing pain and treatments and surgeries that seemed to be completely ineffective, I was diagnosed with PTSD. Panic attacks, insomnia, night mares, social anxiety, depression you name it. My life has changed dramatically in a way that even my family and friends can't understand. For example; I am unable to cope in a large busy social setting. Parties, loud music, lots of people bumping into me or crowding my personal space is enough to make me scream at the top of my lungs and jump off a bridge. Another example of how PTSD has changed my life is driving a motor vehicle. The simple act of driving to work or driving the kids to activities is all that I can handle. Running errands.....not enjoyable. I am no longer able to go to multiple grocery stores in one day. I have to spread these tasks out over a period of time. And from that I have learned.... there is nothing that can't wait. I literally don't go anywhere unless I have to. At this stage in my life, I believe that if someone wants to see me bad enough, they will come to me. I am not going to experience panic and fear just for the sake of visiting someone especially in front of my children. They deserve to see a mother who is strong and invincible, not one who is broken. How can they expect me to solve all of their problems, fix all of their broken toys, put together countless loom bracelets, and help them with homework if I can't even manage to drive to a relative's house. With time, it is getting better. Therapy and a support group is helping, so I have hope.
The appointment with Dr. Zhong brought me out of a very dark place. I saw hope again.
But then...
To have that hope pulled right out from underneath me-safety net withdrawn, was devastating. This whole process now has taken 19 months. And after everything I had been through, I was now left to do my own research and find a surgeon willing to take me on as a patient. Not just as a delayed reconstruction case but a revision. Not all surgeons are even willing to get involved in a revision case. I began calling and emailing doctors all over Ontario and Canada. I was given wait times of 1-3 years. At that rate, I might as well sit back and wait for Dr. Zhong to return from maternity leave.
But that meant, 14 more months (or longer) of sleepless nights, depression, worry, anxiety, pain and chronic discomfort. I couldn't sit back and do nothing, I had to find another surgeon.
Then I finally found a surgeon willing to give me a consultation with in 2 months. My husband and I performed hours and hours of google, yahoo, and breast cancer site blog research into this surgeon. We were confident that his experience and dedication to breast cancer reconstruction awareness warranted a consultation. And so we went...
In October 2014 I met with Dr. Nicholas Guay. Previously Dr. Guay worked out of the Ottawa hospital and was actually on my original list of doctors of choice but the thought of making the trip to Ottawa deterred me. To our benefit, Dr. Guay has taken on the role of Chief of Surgery at William Osler Health Centre. He is a self-proclaimed breast expert and his vast experience with breast reconstruction speaks for itself. Even with his new chief of surgery position, he has remained focused and committed to breast reconstruction surgery above all else. Dr. Guay is the founder of The most resourceful breast reconstruction website available today His charming French accent and stunningly good looks don't do him or his patients any harm.
Dr. Guay brought about the idea of choosing a free flap reconstruction method Autologous Tissue Flap instead of trying to succeed with implants. His approach was different than the other surgeons. He is confident, straight to the point/direct which had been missing from previous consultations. Other surgeons always seemed unsure of which course of treatment to embark on. My first surgeon instructed me to gain weight prior to meeting with Dr. Zhong. She felt that in order to present myself as an ideal candidate, I needed to have more abdominal fat to use along with the implants. Dr. Guay seemed very pleased with my presentation of the additional fat and gave me all of the information about the DIEP Flap. He answered all of our questions, we did not feel rushed at all. He then asked me to take a month to consider the option of having a DIEP Flap. The difference this time around with the DIEP vs Implant method is that his OR time for a DIEP Flap is 4-5 hours less than other surgeons. Dr. Guay claims that he has performed so many of them, that he has mastered a system. This was a game changer.
This is a great video explanation of the DIEP Flap reconstruction procedure Here
In 2005 I was diagnosed with Wolff Parkinson White syndrome a rare congenital heart disorder. In 2007 I underwent an ablation to cauterize the whole in my heart and restore natural rhythm. Even though I have been 95% asymptomatic since the ablation, it was a factor when considering a DIEP Flap surgery requiring 12 hours of general anesthetic. The other factor was the recovery period. 12 weeks (maybe longer) vs 4-6 weeks with implants. The overall risks were much higher with a DIEP. However, many things have changed since then. I have already undergone the removal of my breast tissue and that part of my body has healed. Also, I have already had the opportunity to "brave the battle scars" as they call it. I have had 19 months to accept my scars and disfigurement. Really at this point, I don't think it could possibly get any worse. I am now less concerned about adding an abdominal scar to my list of battle wounds. I mean really, who gives a shit?
The scars are a part of who I am. They resemble courage, bravery, selflessness, beauty, love, devotion and my history. They tell my story. A story that I want to share with my children and God.
After weeks of research and weighing the pros vs cons, I went back to meet with Dr. Guay to let him know that I have decided to go ahead with the DIEP Free Flap reconstruction. Because he is just setting up his practice at William Osler Hospital, the wait time for reconstruction surgery isn't bad at all. So in April, 2016 I will take a leap of faith and let God guide me towards my path. I have realized that I can no longer control every aspect of my life. I believe that everything has happened for a reason, and that someone has been carefully looking over me throughout this entire ordeal.
Some great before/after photos of autologous tissue reconstruction, Here.
Today I admitted to Dr. Guay that I am extremely unhappy and uncomfortable with my weight gain. I don't like how I feel, I don't like how I look, and my clothes are too tight (went up a size). I asked him once again to clarify "do I really need to hang onto this excess body fat?" or can I afford to lose a little and tone up prior to April's surgery. He proceeded to poke, pull and tug at my abdomen, and chest area. His words "I believe I have exactly what I need here to create a pair of breasts using your own tissue that you will be satisfied with." So I ask him again "Can I tone up my butt and thighs and arms?" Basically he reminds me that when women gains weight, they gain it in more than one area. Therefore if I need excess abdominal fat, you can be sure that extra thigh, back and bum fat will tag along for the ride. He suggested Yoga, meditation, pilates and walking. But nothing too extreme. He suggested that we take a few measurements now and monitor things. Ideally we want the measurements to remain the same. He assures me that he will leave nothing behind. However, he did clarify that he can't help me much with the butt and thighs, that will be my battle after surgery. And I'm looking forward to it!
I AM NOT DEFINED BY MY BREASTS OR MY PHYSICAL APPEARANCE
I am defined by my character and my loyalty and dedication to my family
