I have had to leave Facebook temporarily since my wonderful niece (she really is wonderful) is doing a countdown to March 15th for a very cool concert she is going to. It happens to be the day I will have my breasts removed and endure 12+ hours of surgery to create new breasts. I want time to stand still. I get a knot in my stomach each time I see her countdown, so I have been avoiding facebook.
Although, I have created a FB account under the name Beth Israel which will be primarily updates as we move closer to the 15th and as we move beyond the big day and the big surgery.
Monday, January 25, 2010
Tuesday, January 19, 2010
It's all about the FEAR.....
Here is another post from a previvor's blog.....this says it all, for now....
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From this blog: http://goodbyetoboobs.blogspot.com/
3) The worst part of surgery is the fear and anxiety I felt leading up to it.
It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.
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From this blog: http://goodbyetoboobs.blogspot.com/
3) The worst part of surgery is the fear and anxiety I felt leading up to it.
It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.
I could have posted this myself.....
This is from a blog I came across recently.......my feelings are the same....the procedure the same.....
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DIEP
November 1, 2009 by Teri Smieja
I’ve been talking awhile now about my fast approaching PBM – the DIEP that I’m having on January 12, 2010. For some reason saying ‘in January’ still made it seem far away. When I wrote yesterday’s blog entry instead of saying ‘in January’ I said ‘in a little over two’ months. Wording it that way made me realize how close it is – two months! I have no doubt that I’m going to be thinking and therefore blogging about this a lot more frequently in the next two months. I’ve already spent a lot of time explaining WHY I’m doing what I’m doing, so why not explain WHAT it is that I’m doing….
These days there are many different reconstruction options available to women who have mastectomies. When I first started learning about BRCA mutations, preventative surgeries and reconstruction, I was overwhelmed with all of the choices available. After a lot of research and thought I finally decided that the DIEP flap was the best option for me.
PBM = Prophylactic Bilateral Mastectomy – Prophylactic refers to the preventative aspect of the surgery. When a woman has her breasts removed BEFORE they have cancer then it is a PBM. PBM is NOT a specific reconstruction type; it’s the surgical removal of healthy breasts – bilateral means both breasts, also known as a double mastectomy.
DIEP = Deep Inferior Epigastric Perforator Flap. This is one of many reconstruction options available. It’s a highly technical and difficult surgery to perform and not just any doctor can do it. The DIEP can be used as immediate or delayed reconstruction. In my case I’ll be having a PBM with an immediate DIEP reconstruction. I will never have the experience of waking up and looking down to see no breasts on my chest (if you knew how much this image haunted me when I first learned of my BRCA mutated status, you’d know what a relief this is to me). When I wake up from surgery it will be with reconstructed breasts – though they won’t be picture perfect yet and will still need some work and revision surgery about 12 weeks later, which means even more time needed for recovery.
The DIEP uses fatty tissue and skin from the abdomen to reconstruct. The stomach area is cut from one end to the other leaving one hell of a scar – about twice the size of a c-section scar. Fat is scooped out as well as a subcutaneous layer of skin. Subcutaneous means ‘just under the skin.’ Small blood vessels are removed with this skin and then attached to blood vessels in the breast area (this is why the term ‘flap’ is used) after the mastectomy – that’s the part that makes it microsurgery – it’s all so small that the surgeons need to use a microscope to see what they’re doing. Tricky stuff! The end result of my stomach area will be much the same as if I had a tummy tuck. No stomach muscles are cut with the DIEP. That means that the muscle integrity in the stomach isn’t compromised. It’s also less healing to worry about. That’s a good thing.
Nipple reconstruction is optional and I’m still leaning toward not having this done at all. I’ll save that subject for another entry.
The mastectomy requires an incision from the lower portion of the breast (either directly under the nipple or to the outer sides of it) – and as much of the breast and fatty tissue that can be removed, gets removed.
This surgery will require 12-14 hours (if all goes well) of being under anesthesia and involves a lot of slicing, scraping, precise removal of tissue and skin, attaching and stitching – it’s going to be quite a recovery process! Drains are placed in each new breast and in each side of the stomach. These have to stay in for 2-5 days, and from what I’ve heard, they are more of a nuisance than anything.
There are a few advantages of having a flap procedure for reconstruction versus expanders/implants. While the recovery is harder at the beginning (more of the body needs to heal), overall it’s over sooner than those who go the implant route – which takes many months of weekly or bi-weekly fills, stretching the skin out enough for the implants and then a final exchange surgery.
With the DIEP my breasts will grow or shrink with me as I lose or gain weight. Another advantage to having a flap reconstruction over implants is that I won’t have to worry about capsular contracture – my body won’t reject its own fat.
Of the multitude of reconstruction options out there, each one has advantages and disadvantages and who gets what kind should be based on the individual. Different women have different needs/wants.
_____________________________________________________________________________
DIEP
November 1, 2009 by Teri Smieja
I’ve been talking awhile now about my fast approaching PBM – the DIEP that I’m having on January 12, 2010. For some reason saying ‘in January’ still made it seem far away. When I wrote yesterday’s blog entry instead of saying ‘in January’ I said ‘in a little over two’ months. Wording it that way made me realize how close it is – two months! I have no doubt that I’m going to be thinking and therefore blogging about this a lot more frequently in the next two months. I’ve already spent a lot of time explaining WHY I’m doing what I’m doing, so why not explain WHAT it is that I’m doing….
These days there are many different reconstruction options available to women who have mastectomies. When I first started learning about BRCA mutations, preventative surgeries and reconstruction, I was overwhelmed with all of the choices available. After a lot of research and thought I finally decided that the DIEP flap was the best option for me.
PBM = Prophylactic Bilateral Mastectomy – Prophylactic refers to the preventative aspect of the surgery. When a woman has her breasts removed BEFORE they have cancer then it is a PBM. PBM is NOT a specific reconstruction type; it’s the surgical removal of healthy breasts – bilateral means both breasts, also known as a double mastectomy.
DIEP = Deep Inferior Epigastric Perforator Flap. This is one of many reconstruction options available. It’s a highly technical and difficult surgery to perform and not just any doctor can do it. The DIEP can be used as immediate or delayed reconstruction. In my case I’ll be having a PBM with an immediate DIEP reconstruction. I will never have the experience of waking up and looking down to see no breasts on my chest (if you knew how much this image haunted me when I first learned of my BRCA mutated status, you’d know what a relief this is to me). When I wake up from surgery it will be with reconstructed breasts – though they won’t be picture perfect yet and will still need some work and revision surgery about 12 weeks later, which means even more time needed for recovery.
The DIEP uses fatty tissue and skin from the abdomen to reconstruct. The stomach area is cut from one end to the other leaving one hell of a scar – about twice the size of a c-section scar. Fat is scooped out as well as a subcutaneous layer of skin. Subcutaneous means ‘just under the skin.’ Small blood vessels are removed with this skin and then attached to blood vessels in the breast area (this is why the term ‘flap’ is used) after the mastectomy – that’s the part that makes it microsurgery – it’s all so small that the surgeons need to use a microscope to see what they’re doing. Tricky stuff! The end result of my stomach area will be much the same as if I had a tummy tuck. No stomach muscles are cut with the DIEP. That means that the muscle integrity in the stomach isn’t compromised. It’s also less healing to worry about. That’s a good thing.
Nipple reconstruction is optional and I’m still leaning toward not having this done at all. I’ll save that subject for another entry.
The mastectomy requires an incision from the lower portion of the breast (either directly under the nipple or to the outer sides of it) – and as much of the breast and fatty tissue that can be removed, gets removed.
This surgery will require 12-14 hours (if all goes well) of being under anesthesia and involves a lot of slicing, scraping, precise removal of tissue and skin, attaching and stitching – it’s going to be quite a recovery process! Drains are placed in each new breast and in each side of the stomach. These have to stay in for 2-5 days, and from what I’ve heard, they are more of a nuisance than anything.
There are a few advantages of having a flap procedure for reconstruction versus expanders/implants. While the recovery is harder at the beginning (more of the body needs to heal), overall it’s over sooner than those who go the implant route – which takes many months of weekly or bi-weekly fills, stretching the skin out enough for the implants and then a final exchange surgery.
With the DIEP my breasts will grow or shrink with me as I lose or gain weight. Another advantage to having a flap reconstruction over implants is that I won’t have to worry about capsular contracture – my body won’t reject its own fat.
Of the multitude of reconstruction options out there, each one has advantages and disadvantages and who gets what kind should be based on the individual. Different women have different needs/wants.
More Fodder for the Doubting Mind.....
Abstract
Bilateral prophylactic mastectomy without reconstruction is not accepted by the majority of patients. Successful reconstruction is therefore a mandatory condition for prophylactic mastectomy. Of the many options for autologous breast reconstruction, the deep inferior epigastric perforator (DIEP) flap best meets requirements for bilateral reconstruction in selected patients. The goal of this study is to verify the feasibility of the procedure in our conditions and to find out how it is accepted by patients.
We present 55 consecutive patients who were scheduled for bilateral DIEP flap reconstruction during a 4-year period. We reviewed medical charts, performed clinical assessments and processed anonymous questionnaires. There were 77 immediate and 33 delayed breast reconstructions.
There was 100% flap survival and no microanastomoses revisions. In 11 patients (10%) the surgeon preferred to convert the DIEP into a mini transverse rectus abdominis muscle (miniTRAM) flap in order to provide adequate blood supply. Complications: revision for haematoma under the flap in four patients (7.2%), excessive blood loss in four patients (7.2%) and partial mastectomy skin flap necrosis in 10 immediate breast reconstructions (12.9%). Patients' evaluation of the aesthetic result was good or excellent in 96.2% of cases. In 33.9% of patients the postoperative quality of life was considered unchanged and 50.9% of them it even improved.
The DIEP flap is recommended for bilateral breast reconstruction. Occasional conversion into a miniTRAM flap can increase the total flap survival rate. Bilateral prophylactic mastectomy and DIEP flap reconstruction are very well accepted by patients.
Bilateral prophylactic mastectomy without reconstruction is not accepted by the majority of patients. Successful reconstruction is therefore a mandatory condition for prophylactic mastectomy. Of the many options for autologous breast reconstruction, the deep inferior epigastric perforator (DIEP) flap best meets requirements for bilateral reconstruction in selected patients. The goal of this study is to verify the feasibility of the procedure in our conditions and to find out how it is accepted by patients.
We present 55 consecutive patients who were scheduled for bilateral DIEP flap reconstruction during a 4-year period. We reviewed medical charts, performed clinical assessments and processed anonymous questionnaires. There were 77 immediate and 33 delayed breast reconstructions.
There was 100% flap survival and no microanastomoses revisions. In 11 patients (10%) the surgeon preferred to convert the DIEP into a mini transverse rectus abdominis muscle (miniTRAM) flap in order to provide adequate blood supply. Complications: revision for haematoma under the flap in four patients (7.2%), excessive blood loss in four patients (7.2%) and partial mastectomy skin flap necrosis in 10 immediate breast reconstructions (12.9%). Patients' evaluation of the aesthetic result was good or excellent in 96.2% of cases. In 33.9% of patients the postoperative quality of life was considered unchanged and 50.9% of them it even improved.
The DIEP flap is recommended for bilateral breast reconstruction. Occasional conversion into a miniTRAM flap can increase the total flap survival rate. Bilateral prophylactic mastectomy and DIEP flap reconstruction are very well accepted by patients.
I need to hear that I am not alone (and not crazy)...
Oh, the date for my surgery is coming fast and furiously closer. I am scared. I admit this only to my DH, who is very supportive. BUT I need to hear about or from people who have had non-invasive bc AND who took the courageous step toward bilateral mastectomies. I was googling Rene Syler and found this. I first learned of Rene Syler, who had a PBM two years ago, when I was in a plastic surgeon's office in Boston. There was a magazine with an article of her. I hadn't thought of her or that article until now. Now is when I need the reinforcement and support to keep me focused on moving ahead. It really isn't about my breasts, it's about staying alive and healthy for my kids. So, anyway, this is an excerpt from an online article on Rene Syler.
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More From This ArticleProphylactic Mastectomy the Facts
While no national statistics exist, in the last five years more women at high risk for breast cancer—those with a strong family history, a genetic predisposition or with biopsies that indicate certain abnormal cell growth—are opting for prophylactic mastectomies, reducing their likelihood of developing breast cancer by up to 98 percent. "Women are choosing to be proactive in risk reduction," says Dr. Cheryl Perkins, clinical adviser for Susan G Komen for the Cure. "[The procedure] has become more readily available, more sophisticated and refined."
Most women are pleased with the results. "We find that almost always, quality of life improves," says Syler's own doctor Virgilio Sacchini, attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City.
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More From This ArticleProphylactic Mastectomy the Facts
While no national statistics exist, in the last five years more women at high risk for breast cancer—those with a strong family history, a genetic predisposition or with biopsies that indicate certain abnormal cell growth—are opting for prophylactic mastectomies, reducing their likelihood of developing breast cancer by up to 98 percent. "Women are choosing to be proactive in risk reduction," says Dr. Cheryl Perkins, clinical adviser for Susan G Komen for the Cure. "[The procedure] has become more readily available, more sophisticated and refined."
Most women are pleased with the results. "We find that almost always, quality of life improves," says Syler's own doctor Virgilio Sacchini, attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City.
Sunday, January 17, 2010
Less than 2 months away....
My surgery in now less than two months away. As a way of blocking this fact out of my mind, I have been cleaning and organizing!! The attic is done, the basement is done (well almost done), the garage has been cleaned, the girls' bedrooms have been rearranged and one room turned into a playroom, Jie Jie's paperwork has been put in plastic sheets and saved in a pretty pink binder, DV tapes have been transferred to DVDs and that's just the beginning.
Next up is FINALLY, Mei Mei's lifebook and video. In the meantime I have been working on revamping my website - for maybe the 10th time. Each year I learn a bit more about website design and want to put all that knowledge to work.
I know that all these projects are diversions from the fact that in less than two months I will CHOOSE to have both of my breasts removed and replaced with the belly fat that I am trying very hard to grow. It's probably silly, but I don't want to get down to Boston and have the plastic surgeon tell me that there just isn't enough 'material' to harvest. Sidetrack: the first time I heard the word "harvest" in relation to my body was the very first plastic surgeon I met with. He talked about a 22-hour surgery and carving my back up to make new breasts, only to have to use implants after all that. I ran from his office just about as fast as my legs would carry me.
So now, I am looking at a 12-hour surgery, but using my belly. They say the bonus is that I get a tummy tuck in the deal. I guess that is good, it's just that I am a believer that I could create a flatter tummy if I tried - all by myself and without the help of a scapel. Anyway, I will get a tummy tuck and a new bellybutton. I like the old one, but I get a new one. I don't want to ask why or how. Everytime I see a medical show on tv and they start to cut someone open, I cringe. I know that will be me.
Another sidetrack: during my first biopys my breast surgeon was talking me through it. She offered to show me the razor-like device she was using to poke my skin. I did glance at it, but then told her very clearly that I really didn't need to see anything more. My eyes stayed glued to a poster on the ceiling. It was a poster of a head, maybe Einstein, maybe Freud, maybe it was a generic head with comments of when things were invented and how long it took and something about doubters. I am surprised that I remember that much, but then again 45 minutes is a long time to be staring at something in an attempt to avoid something very unappealing - like my body being cut open.
For the end of a long day, long weekend, I seem to have come to life. Well, 24 is about to start so I will join the millions of others and watch the season premier. Although I much prefer the drama of Desperate Housewives.
Next up is FINALLY, Mei Mei's lifebook and video. In the meantime I have been working on revamping my website - for maybe the 10th time. Each year I learn a bit more about website design and want to put all that knowledge to work.
I know that all these projects are diversions from the fact that in less than two months I will CHOOSE to have both of my breasts removed and replaced with the belly fat that I am trying very hard to grow. It's probably silly, but I don't want to get down to Boston and have the plastic surgeon tell me that there just isn't enough 'material' to harvest. Sidetrack: the first time I heard the word "harvest" in relation to my body was the very first plastic surgeon I met with. He talked about a 22-hour surgery and carving my back up to make new breasts, only to have to use implants after all that. I ran from his office just about as fast as my legs would carry me.
So now, I am looking at a 12-hour surgery, but using my belly. They say the bonus is that I get a tummy tuck in the deal. I guess that is good, it's just that I am a believer that I could create a flatter tummy if I tried - all by myself and without the help of a scapel. Anyway, I will get a tummy tuck and a new bellybutton. I like the old one, but I get a new one. I don't want to ask why or how. Everytime I see a medical show on tv and they start to cut someone open, I cringe. I know that will be me.
Another sidetrack: during my first biopys my breast surgeon was talking me through it. She offered to show me the razor-like device she was using to poke my skin. I did glance at it, but then told her very clearly that I really didn't need to see anything more. My eyes stayed glued to a poster on the ceiling. It was a poster of a head, maybe Einstein, maybe Freud, maybe it was a generic head with comments of when things were invented and how long it took and something about doubters. I am surprised that I remember that much, but then again 45 minutes is a long time to be staring at something in an attempt to avoid something very unappealing - like my body being cut open.
For the end of a long day, long weekend, I seem to have come to life. Well, 24 is about to start so I will join the millions of others and watch the season premier. Although I much prefer the drama of Desperate Housewives.
Wednesday, January 6, 2010
Reflections
Now for some reflections. I want to talk about my beautiful and loving daughters. Jie Jie and Mei Mei are truly the light of my life. When you are facing a very difficult decision and a very long (12 hour) surgery you start to think about all the things that are important to you. My DH is my best friend and the one person in this world that I undeniably rely on to hold me up. He has been supportive throughout this past year in a way I never would have expected. Accompanying me to each and every key appointment. Never complaining. Always deferring to 'my' decision. But in his eyes I could see that he doesn't want to see me battle breast cancer with chemo and radiation - if I can avoid it. He has always insisted on being there for me before, during and after my surgery. I could never have asked for a better partner in life.
Saturday, January 2, 2010
Happy New Year!
Two and a half months and counting. I used to be able to say that my upcoming surgery was 'next' year, but that time has come. Now I am still counting in months, next it will be weeks, then days, then hours, then minutes. I am scared. On New Year's Eve I created my will. What if something goes wrong? I know I can't or shouldn't think that way. But for those of you who know me know that I plan for the worst. Maybe that's bad karma, but I would rather be prepared.
When working on a will there are lots of choices to make. It's not all about money! There were alot of questions about health directives. So, on New Year's Eve I kept asking my DH if he would be willing to make all sorts of gut-wrenching decisions for me. He's a good sport and agreed.
One New Year's Day I started cleansing the house, starting in the attic. By March 15th I want to have my house all organized and orderly. I know in my heart, it's a 'just in case' scenario. I also know that women everyday have this surgery and not only survive it, but (later) say they wouldn't do it any other way.
I am still keeping my decision and my plans close to the chest, so to speak. So far, two of my sisters-in-law know. One sister-in-law is planning to come to my house and stay with the girls. There is no way to thank her for her kindness and generosity if I lived to be 100. I have also told a few of my closest friends. Not many since I don't want that to affect our relationship. I am telling only the people whom I believe will be genuinely helpful to me, DH or my daughters. I am not interested in telling people so that they will be 'in the know'.
When working on a will there are lots of choices to make. It's not all about money! There were alot of questions about health directives. So, on New Year's Eve I kept asking my DH if he would be willing to make all sorts of gut-wrenching decisions for me. He's a good sport and agreed.
One New Year's Day I started cleansing the house, starting in the attic. By March 15th I want to have my house all organized and orderly. I know in my heart, it's a 'just in case' scenario. I also know that women everyday have this surgery and not only survive it, but (later) say they wouldn't do it any other way.
I am still keeping my decision and my plans close to the chest, so to speak. So far, two of my sisters-in-law know. One sister-in-law is planning to come to my house and stay with the girls. There is no way to thank her for her kindness and generosity if I lived to be 100. I have also told a few of my closest friends. Not many since I don't want that to affect our relationship. I am telling only the people whom I believe will be genuinely helpful to me, DH or my daughters. I am not interested in telling people so that they will be 'in the know'.
