I am so incredibly excited! This year, since it would not be very easy to participate in the Susan G. Komen 3-Day due to law school, I have decided to run in the Komen Race for the Cure. It has now been 7 weeks since surgery and while I run more than a 5k on my workout days, I am feeling as though this run will be very special even though it is short. I am running as a changed woman for all of the women in my family affected by this disease, as well as my friends, and now I have a new group of women that I will be running for. To my fellow Pink Moon Lovelies, I will be carrying each of your stories in my heart as I run.
I set a low fundraising goal because I know that times are tough for others. I am almost to my goal which would provide one potentially lifesaving diagnostic mammogram. I just wanted people to know about this event so that they could potentially participate and/or to let others know that I'm still in this fight! Thank you to everyone who has continued to cheer me on throughout my own recovery so that I am able to inspire and inform others. I could not have done this without that support!
http://sandiego.info-komen.org/site/TR/RacefortheCure/SAN_SanDiegoAffiliate?px=5590842&pg=personal&fr_id=2601
Tuesday, September 11, 2012
Saturday, August 25, 2012
I did it!
To begin, I really wanted to post a while ago but I was having trouble with my energy level. But finally, I am able to write. What a whirlwind these last four weeks have been! Here is the play by play!
July 25th, the morning of my surgery came faster than I could have ever imagined. To begin, I thought that I would have a difficult time going to bed the night before and I actually fell asleep with no problem. Check in was at 0530 so I was up at 0400 to shower and get ready. True to my typical self, I straightened my hair and tried to look as presentable as I possibly could for 0530. My Mom, my Dad, Alessandro, my boyfriend for those who do not know, and I all traveled to the hospital. Once I got into the admitting office my nerves set in. Until that point I truly had not felt any signs of nervousness. I was quickly checked in and swept away to pre-op. At this point I was alone. I had to change into my gown and booties, get my IV put in, and answer more questions than I could comprehend. Then they let my family come back and see me. First, my Dad came back. He made sure that I was comfortable, gave me a hug, kissed me and told me that he loved me. Next, my Mom came in. My Mom hugged me, and in typical fashion, she scratched my scalp and rubbed my hair. Then she started to tell me that she was so proud of me and I finally broke down and began to cry. I just could not stop thinking about how sad she might have felt because the gene was passed to me from her. I could not help but feel like she might have felt guilty. I got through the tears and felt at ease after a few minutes of conversation and she left. Next came Alessandro. No person has ever been able to make me feel so comfortable in any situation. He stayed with me in pre-op until they took me back for surgery. My plastic surgeon and general surgeon both came in to see me and then my plastic surgeon drew on me, marking where all of the cuts were to be made. Both of my doctors were and have continued to be absolutely incredible. After my plastic surgeon left, my nurse came in and gave me a "margarita". I don't really remember it relaxing me too much but I am sure that it did more than I thought at the time. They also gave me a hand full of medications to prevent nausea, as well as a patch on my ear to prevent further nausea during the days after the surgery. I said goodbye to Alessandro at this point and they rolled me back into the operating room at around 0730. I very clearly remember being in the operating room. I climbed onto the operating table on my own and listened as all of the nurses introduced themselves to my doctors. My general surgeon patted my leg and she really put me at ease. One of the nurses sat by my side and was holding my hand and asking me questions about my surgery. Right after that, I remember my anesthesiologist, who was also incredible, putting the oxygen mask on my face and telling me that it was oxygen only. He lied. I remember smelling a weird scent for about 30 seconds and the next thing that I remember is waking up.
Unfortunately the surgery did not go as planned. Prior to the surgery, it had been decided that they would not perform a lymph node biopsy because my MRI was normal. However, when they began the mastectomy, they noticed that my lymph nodes were abnormal. My surgeon began to dissect the nodes from my left arm because they were black. At this point they feared the worst, they believed that I had melanoma. It was not until two days later that it was determined that it was actually black pigment from my breast cancer tattoo that is on my ribs, talk about ironic. Dr. Kudva ended up removing 8 lymph nodes and they continued with the surgery. I remember very clearly waking up. Dr. Kudva told me about my lymph nodes and I broke down into tears. One would think that I was upset over the possibility of having melanoma, but no, I was crying and pleading with my doctors to not let me get lymphedema. Oh the joys of pain medication. Other than that complication the surgery went well. My breast tissue was given the all clear by pathology and my expanders were put into place and filled with 100ml of fluid each which is about an A cup on my body. The next thing that I remember is being in post-op, asking for ice to eat, and telling jokes. I asked my parents later what I was saying and apparently I was in great spirits and telling all of the nurses why I had the surgery and all of the statistics behind it. I am just glad that I was not a problem patient.
Once I arrived home I got comfortable in bed, I welcomed visitors and then I napped. The first few days are a little blurry for me now but I do remember those who called and visited me and hanging out with my family and Alessandro. Soon after I arrived home my room was filled with beautiful flowers and I was surrounded with love. I never really had any severe pain, I was mostly sore and uncomfortable. I had moments of frustration where I would break down and cry because I am not one that likes to ask others for help. Other than that, my recovery was extremely uneventful and went rather smoothly. The biggest annoyance for me, and typically for others, were the drains. Luckily, I had my drains removed after 8 full days. I went to all of my post-op appointments and got the all clear from my doctors. There were no signs of infection and everything looked great. It only took about 10 days for me to be completely off of the medication, and I only used Tylenol for about 5 days after that. 2 weeks after my surgery I celebrated my 24th birthday. This birthday was so much more special. Without the fear of cancer hanging over me I truly felt as though this was the first new year of the rest of my life.
3 weeks after surgery I saw my plastic surgeon for a check up and he gave me the all clear to start exercising again and now that I am able to run, I feel great. I also began my second year of law school during the third week. It was very difficult to adjust and I am still adjusting but I feel more and more like myself every day.
It has now been 4 weeks since my surgery and I feel great. My incisions are already hardly visible and faint scars are beginning to set in. I will begin using a medical grade silicone treatment to further treat my scars. This coming Monday, the 27th of August, I will have my first expansion. I am really anxious to continue with this process and to see the end result. However, for now I am mostly occupied by my studies.
Throughout this surgery I learned a lot. I learned a lot about friendship and family. I am so grateful for the support and love that I received from every single person and I am also grateful for the support that I expected but that I did not receive. It is in moments like this that you really learn who will always be there for you. This has been such a valuable lesson to me. I also learned that I have the most loving and loyal boyfriend. I only hope that every one can experience such unconditional love and caring in their lifetime. In addition, the feeling of relief that I am already experiencing is incredible. Reducing my risk of breast cancer by 90% was the best gift that I have ever given myself and I do not regret it one bit. I have been stared at in public and I have had people say extremely insensitive things to me but it does not even bother me, because I have given myself a chance at life free of worry. I also learned a lot about myself. I had never experienced a major surgery nor had I ever endured such a potentially painful procedure. While it may not be easy for others, and I do recognize that, this surgery and recovery were rather easy on me. I learned that my pain tolerance is extremely high and I am truly proud of myself. I made it through the hard part and I know that the other procedures will be a lot easier.
On November 4th I will be running in the Susan G. Komen Race for the Cure. I will be running the 5k with a whole new outlook on life. Once I get the information together I will post it for those who would like to run it with me or for those who would like to donate. At the same time I will also begin physical therapy for my left arm. As of now, I do not have much feeling in my arm and it is visibly swollen. Physical therapy will help manage the lymphedema and will help me to learn to deal with the nerve damage.
Lastly, thank you to all of my friends and family for all of your unwavering love and support. There is no way that I could have gotten through this without each and every one of you. Sitting here today, I know that I made the right decision for me.
July 25th, the morning of my surgery came faster than I could have ever imagined. To begin, I thought that I would have a difficult time going to bed the night before and I actually fell asleep with no problem. Check in was at 0530 so I was up at 0400 to shower and get ready. True to my typical self, I straightened my hair and tried to look as presentable as I possibly could for 0530. My Mom, my Dad, Alessandro, my boyfriend for those who do not know, and I all traveled to the hospital. Once I got into the admitting office my nerves set in. Until that point I truly had not felt any signs of nervousness. I was quickly checked in and swept away to pre-op. At this point I was alone. I had to change into my gown and booties, get my IV put in, and answer more questions than I could comprehend. Then they let my family come back and see me. First, my Dad came back. He made sure that I was comfortable, gave me a hug, kissed me and told me that he loved me. Next, my Mom came in. My Mom hugged me, and in typical fashion, she scratched my scalp and rubbed my hair. Then she started to tell me that she was so proud of me and I finally broke down and began to cry. I just could not stop thinking about how sad she might have felt because the gene was passed to me from her. I could not help but feel like she might have felt guilty. I got through the tears and felt at ease after a few minutes of conversation and she left. Next came Alessandro. No person has ever been able to make me feel so comfortable in any situation. He stayed with me in pre-op until they took me back for surgery. My plastic surgeon and general surgeon both came in to see me and then my plastic surgeon drew on me, marking where all of the cuts were to be made. Both of my doctors were and have continued to be absolutely incredible. After my plastic surgeon left, my nurse came in and gave me a "margarita". I don't really remember it relaxing me too much but I am sure that it did more than I thought at the time. They also gave me a hand full of medications to prevent nausea, as well as a patch on my ear to prevent further nausea during the days after the surgery. I said goodbye to Alessandro at this point and they rolled me back into the operating room at around 0730. I very clearly remember being in the operating room. I climbed onto the operating table on my own and listened as all of the nurses introduced themselves to my doctors. My general surgeon patted my leg and she really put me at ease. One of the nurses sat by my side and was holding my hand and asking me questions about my surgery. Right after that, I remember my anesthesiologist, who was also incredible, putting the oxygen mask on my face and telling me that it was oxygen only. He lied. I remember smelling a weird scent for about 30 seconds and the next thing that I remember is waking up.
Unfortunately the surgery did not go as planned. Prior to the surgery, it had been decided that they would not perform a lymph node biopsy because my MRI was normal. However, when they began the mastectomy, they noticed that my lymph nodes were abnormal. My surgeon began to dissect the nodes from my left arm because they were black. At this point they feared the worst, they believed that I had melanoma. It was not until two days later that it was determined that it was actually black pigment from my breast cancer tattoo that is on my ribs, talk about ironic. Dr. Kudva ended up removing 8 lymph nodes and they continued with the surgery. I remember very clearly waking up. Dr. Kudva told me about my lymph nodes and I broke down into tears. One would think that I was upset over the possibility of having melanoma, but no, I was crying and pleading with my doctors to not let me get lymphedema. Oh the joys of pain medication. Other than that complication the surgery went well. My breast tissue was given the all clear by pathology and my expanders were put into place and filled with 100ml of fluid each which is about an A cup on my body. The next thing that I remember is being in post-op, asking for ice to eat, and telling jokes. I asked my parents later what I was saying and apparently I was in great spirits and telling all of the nurses why I had the surgery and all of the statistics behind it. I am just glad that I was not a problem patient.
Once I arrived home I got comfortable in bed, I welcomed visitors and then I napped. The first few days are a little blurry for me now but I do remember those who called and visited me and hanging out with my family and Alessandro. Soon after I arrived home my room was filled with beautiful flowers and I was surrounded with love. I never really had any severe pain, I was mostly sore and uncomfortable. I had moments of frustration where I would break down and cry because I am not one that likes to ask others for help. Other than that, my recovery was extremely uneventful and went rather smoothly. The biggest annoyance for me, and typically for others, were the drains. Luckily, I had my drains removed after 8 full days. I went to all of my post-op appointments and got the all clear from my doctors. There were no signs of infection and everything looked great. It only took about 10 days for me to be completely off of the medication, and I only used Tylenol for about 5 days after that. 2 weeks after my surgery I celebrated my 24th birthday. This birthday was so much more special. Without the fear of cancer hanging over me I truly felt as though this was the first new year of the rest of my life.
3 weeks after surgery I saw my plastic surgeon for a check up and he gave me the all clear to start exercising again and now that I am able to run, I feel great. I also began my second year of law school during the third week. It was very difficult to adjust and I am still adjusting but I feel more and more like myself every day.
It has now been 4 weeks since my surgery and I feel great. My incisions are already hardly visible and faint scars are beginning to set in. I will begin using a medical grade silicone treatment to further treat my scars. This coming Monday, the 27th of August, I will have my first expansion. I am really anxious to continue with this process and to see the end result. However, for now I am mostly occupied by my studies.
Throughout this surgery I learned a lot. I learned a lot about friendship and family. I am so grateful for the support and love that I received from every single person and I am also grateful for the support that I expected but that I did not receive. It is in moments like this that you really learn who will always be there for you. This has been such a valuable lesson to me. I also learned that I have the most loving and loyal boyfriend. I only hope that every one can experience such unconditional love and caring in their lifetime. In addition, the feeling of relief that I am already experiencing is incredible. Reducing my risk of breast cancer by 90% was the best gift that I have ever given myself and I do not regret it one bit. I have been stared at in public and I have had people say extremely insensitive things to me but it does not even bother me, because I have given myself a chance at life free of worry. I also learned a lot about myself. I had never experienced a major surgery nor had I ever endured such a potentially painful procedure. While it may not be easy for others, and I do recognize that, this surgery and recovery were rather easy on me. I learned that my pain tolerance is extremely high and I am truly proud of myself. I made it through the hard part and I know that the other procedures will be a lot easier.
On November 4th I will be running in the Susan G. Komen Race for the Cure. I will be running the 5k with a whole new outlook on life. Once I get the information together I will post it for those who would like to run it with me or for those who would like to donate. At the same time I will also begin physical therapy for my left arm. As of now, I do not have much feeling in my arm and it is visibly swollen. Physical therapy will help manage the lymphedema and will help me to learn to deal with the nerve damage.
Lastly, thank you to all of my friends and family for all of your unwavering love and support. There is no way that I could have gotten through this without each and every one of you. Sitting here today, I know that I made the right decision for me.
Thursday, July 12, 2012
13.
13 is my number. For a lot of people it carries bad luck; it is the opposite for me. Growing up, I always wanted the number 13 on the back of my jerseys. My Dad and I would only go to check out stand number 13 among many other things. When I was 13, I first noticed that I was finally growing what seemed to be breasts. Of course, I was young but a lot of the other girls had already developed quite obviously and I was just excited to have anything at all, but I always loved being smaller. Now that I am older, I realize that I was always smaller because I did not have an ounce of fat on my body as a result of the multiple sports that I played. Years later, I finally caught up to the rest of the girls and grew quite attached to my breasts. I am finally letting go. I no longer look at myself with sadness. I strive for perfection in everything that I do. But as I read somewhere (I cannot remember where exactly): "You're not doing this for beauty and perfection, you're doing this for life." I have become quite at ease over the last few months as I have prepared for this life-changing surgery. I have accepted that I will let go of this part of my body and accept a new normal and gain a future less likely to include breast cancer. I truly look forward to going through this transformation and learning more about myself than I have ever known. And I look forward to the end result, that weight off of my shoulders, or should I say my chest.
As I sit here, 13 days away from my surgery date, I feel the typical nervousness that one would before having surgery but I am also excited. I will not have to live in fear of breast cancer. I hope to dedicate my life's work to helping those who deal with this awful disease and this surgery is my way of making sure that I am around, for a very long time, and able to do just that. 13 days before the big day and I am ready. I've had beautiful photographs taken by a friend's business (www.eyeforlovephoto.com), that I will always cherish. With the help of Keep A Breast, I was able to make a plaster cast of my chest that will be painted at a later day. I have purchased everything that I can think of to make me as comfortable as possible throughout recovery. I am ready and positive.
If you would have told me at the age of 13, when I bought my first bra, that in 10 short years I would undergo a skin-sparing prophylactic bilateral mastectomy with reconstruction, I would have stared at you blankly. I would have never even known what any of those words meant.
I am disappointed that I will begin school this fall with nearly empty expanders but that's just the way life goes sometimes. I will get my expanders filled throughout the semester and once I am done expanding I will wait until winter break to undergo my exchange surgery. It isn't how I had initially hoped that it would happen but in the end, it will all get done and that's what matters.
I feel so blessed to have the amazing support system that I do, and I look forward to continuing to share my story with those who have joined me on this journey. This will most likely be my last post until I feel up to blogging after surgery. Thank you for allowing me to share my inner-most feelings and for the unwavering love and support.
As I sit here, 13 days away from my surgery date, I feel the typical nervousness that one would before having surgery but I am also excited. I will not have to live in fear of breast cancer. I hope to dedicate my life's work to helping those who deal with this awful disease and this surgery is my way of making sure that I am around, for a very long time, and able to do just that. 13 days before the big day and I am ready. I've had beautiful photographs taken by a friend's business (www.eyeforlovephoto.com), that I will always cherish. With the help of Keep A Breast, I was able to make a plaster cast of my chest that will be painted at a later day. I have purchased everything that I can think of to make me as comfortable as possible throughout recovery. I am ready and positive.
If you would have told me at the age of 13, when I bought my first bra, that in 10 short years I would undergo a skin-sparing prophylactic bilateral mastectomy with reconstruction, I would have stared at you blankly. I would have never even known what any of those words meant.
I am disappointed that I will begin school this fall with nearly empty expanders but that's just the way life goes sometimes. I will get my expanders filled throughout the semester and once I am done expanding I will wait until winter break to undergo my exchange surgery. It isn't how I had initially hoped that it would happen but in the end, it will all get done and that's what matters.
I feel so blessed to have the amazing support system that I do, and I look forward to continuing to share my story with those who have joined me on this journey. This will most likely be my last post until I feel up to blogging after surgery. Thank you for allowing me to share my inner-most feelings and for the unwavering love and support.
Thursday, May 3, 2012
Contribute.
I have not been able to post much since I have been preparing for finals. However, a lot of people have asked if I need help with anything, monetarily, supplies, or anything at all. Fortunately my medical bills are covered. I have great insurance and only need to pay a copay (which is very small) when I am admitted. As far as supplies go, I pretty much have everything that I need and anything that I don't already have I will be getting shortly so there's no need there either. If you do feel the urge to give there are two organizations that have been wonderful to me through the last few months.
www.facingourrisk.org and www.keep-a-breast.org
In addition, (and MUCH more important than myself and my needs), a good friend of mine has suffered from many complications after giving birth to her son a month ago. The bills have piled up, her husband has to miss work to help. My friend Anna is such a beautiful and strong woman, with a wonderful husband and three perfect children. They need any help they can get right now and understandably so. So if you are able to, please consider giving anything you can. And if you are unable to give, please keep her and her family in your thoughts and prayers as she has a long road to recovery. Below is a link to their fundraising page.
http://fundrazr.com/campaigns/4Ixd2
I appreciate everyone's willingness and desire to help! If anything, if you can take a moment to keep me in your thoughts, I really appreciate it. The power of prayer and positivity does wonders! And knowing that I have so many wonderful people supporting me has changed my life!
The only update I currently have is that they are in the process of scheduling my surgery. They have to coordinate my own schedule and both of my surgeons' schedules. If they have not contacted me by May 11th, I am to contact them. I do know that I can expect to have my mastectomy in June.
I did see my plastic surgeon recently and I did not get the news that I was hoping for. Unfortunately, I will not be having my exchange at the end of the summer. I will have my mastectomy and be completely finished with filling my expanders by the time I begin school in August. And then in December when I am on winter break, I will have my exchange and be good to go for school in January. And then hopefully soon after I can have the finishing touches done. While I am not happy that I have to wait so long to have my exchange, I know that every thing happens for a reason and 6 months of my life is so small compared to the years I am giving myself by going through this.
Once I am finished with finals (May 16th), I will write a longer post going through some of my experiences in the last month or two. There's never a dull moment with me!
Thank you again for all of the love and support!
www.facingourrisk.org and www.keep-a-breast.org
In addition, (and MUCH more important than myself and my needs), a good friend of mine has suffered from many complications after giving birth to her son a month ago. The bills have piled up, her husband has to miss work to help. My friend Anna is such a beautiful and strong woman, with a wonderful husband and three perfect children. They need any help they can get right now and understandably so. So if you are able to, please consider giving anything you can. And if you are unable to give, please keep her and her family in your thoughts and prayers as she has a long road to recovery. Below is a link to their fundraising page.
http://fundrazr.com/campaigns/4Ixd2
I appreciate everyone's willingness and desire to help! If anything, if you can take a moment to keep me in your thoughts, I really appreciate it. The power of prayer and positivity does wonders! And knowing that I have so many wonderful people supporting me has changed my life!
The only update I currently have is that they are in the process of scheduling my surgery. They have to coordinate my own schedule and both of my surgeons' schedules. If they have not contacted me by May 11th, I am to contact them. I do know that I can expect to have my mastectomy in June.
I did see my plastic surgeon recently and I did not get the news that I was hoping for. Unfortunately, I will not be having my exchange at the end of the summer. I will have my mastectomy and be completely finished with filling my expanders by the time I begin school in August. And then in December when I am on winter break, I will have my exchange and be good to go for school in January. And then hopefully soon after I can have the finishing touches done. While I am not happy that I have to wait so long to have my exchange, I know that every thing happens for a reason and 6 months of my life is so small compared to the years I am giving myself by going through this.
Once I am finished with finals (May 16th), I will write a longer post going through some of my experiences in the last month or two. There's never a dull moment with me!
Thank you again for all of the love and support!
Friday, March 30, 2012
Clear.
I had my MRI on March 19th and five very long days later, I received my results. My scans were normal! There is no cancer and that is wonderful news as I may now move forward with scheduling my surgery and I will be able to keep a little extra tissue in the area as a result!
I am so grateful for the prayers and thoughts! Thank you so much!
I will post more about the experience soon. Law school comes first and my plate is full! Next on the agenda, I will be meeting with my plastic surgeon on April 23rd where we will go through my reconstruction plan and hopefully set the initial surgery date!
Until my next post, I will leave you with this:
"Let others lead small lives, but not you. Let others argue over small things, but not you. Let others cry over small hurts, but not you. Let others leave their future in someone else's hands, but not you." - Jim Rohn.
I am so grateful for the prayers and thoughts! Thank you so much!
I will post more about the experience soon. Law school comes first and my plate is full! Next on the agenda, I will be meeting with my plastic surgeon on April 23rd where we will go through my reconstruction plan and hopefully set the initial surgery date!
Until my next post, I will leave you with this:
"Let others lead small lives, but not you. Let others argue over small things, but not you. Let others cry over small hurts, but not you. Let others leave their future in someone else's hands, but not you." - Jim Rohn.
Wednesday, February 15, 2012
Love.
After Valentine's Day, I feel as if I should write a little something about love. Love is a word that means many different things to people. For some, love brings about thoughts of romance, for others a favorite food item. It's a word that is often thrown around haphazardly and attached to many different things and/or people. This may sound absolutely absurd but what comes to my mind is cancer. I have never, in my very short 23 years of life, seen a love like I did when my mom was diagnosed with breast cancer. The amount of love that I saw between my mom and dad during that time was absolutely amazing. The closeness between my mom and I during this time was also something that I cherished then and that we have maintained since. After almost 33 years of marriage, my mom and dad are still so sweet together and it melts my heart when I think of the way they have always been by each others' sides. When we almost lost my dad a few years ago, my mom was in Sacramento, she hopped in her car and drove like a bat out of hell to be with us, but most importantly to be with my dad in his time of need. So when she was faced with her mastectomy, her chemo, and her recovery, my dad was there; he loved her through it. In addition to the love between my dad and my mom, and the love between a daughter and her mom, the love from strangers and the love from friends, blew my mind. People who had never met my mom would ask about her constantly, people brought gifts, people wanted to do anything they could to help. While I hope that one day breast cancer will be a thing of the past, until then and with my surgery soon to be out of the way, I hope to raise awareness, help as many people as I can, and love others through this awful disease. Since my blog's inception, I have been blessed with many new friends: younger and older women going through the same process, women who have lost loved ones, and women who are just curious. Speaking out has been a very rewarding experience thus far and I am so glad that I did this. The love that has made its way into my life as a result, I'm sure, is only a fraction of the love my mom felt, but it has changed me. On the days that I feel anxious or I doubt my decision, I remember how much love surrounds me and the support that I have behind me. So thank you, to all of you. I hope that at least, even if just once in their lifetime, each person on this planet has the opportunity to feel a love like the love I saw between my mom and dad, like the love between my mom and I, and the love felt by so many others. It never ceases to amaze me that such a beautiful thing can come from such an awful disease.
Also, in light of very recent events, I hope that people will stop and remember that those around us may be here one second and gone the next. Do not ever take those you love for granted. Cherish every living, breathing moment that you are blessed to have. Be kind, be thoughtful, take in the beauty that is around you.
And lastly, I felt it necessary to post this video. It has been one of my favorite songs since I first heard it. And once I saw the video, I am pretty sure that I sat at my desk and sobbed for a solid hour. They did such a fabulous job in capturing the emotions that I have attempted to convey to my readers and the lyrics to this song really hit home. Enjoy!
Sunday, February 5, 2012
Choices.
"All men and women are born, live, suffer and die; what distinguishes us one from another are our dreams, whether they be dreams about worldly or unworldly things, and what we do to make them come about... We do not choose to be born. We do not choose our parents. We do not choose our historical epoch, the country of our birth, or the immediate circumstances of our upbringing. We do not, most of us, choose to die; nor do we choose the time and conditions of our death. But within this realm of choicelessness, we do choose how we live." -Joseph Epstein
Life is about making choices when you can. I did not have a choice to be BRCA1+. But I do have a choice to do something about it. I was very hurt by some of the responses that I received from people that I have known for years. I am not easily hurt by peoples' words, however, when I hear "self-mutilation", that hurts. I am not self-mutilating and I am not a "scared" and "weak" person. I am making a choice to give myself a long, happy, and healthy life.
I do not feel as though I must justify my decision but I really want people to understand that this decision was not easy to make. I have spent about four years researching and contemplating all of my options and this is simply the best decision I can make for myself. Is it the right decision for every woman who is high risk? No. But for me, it is the right choice. I am not doing this because I am a weak person, I am not doing this because I am scared. I am doing this because I watched my mom fight like hell through her cancer treatments. I watched her become weak from the chemotherapy and all she wanted to do was be strong. The experience I had with taking care of my mom was emotionally draining but it brought us closer together and I learned so much about her and myself. However, I do not want my husband, my family, or my children to have to see me like that. I do not want to put anyone I love through that, nor do I want to put myself through that. THAT is why I am doing this. I have knowledge of my susceptibility. My mom, my grandmother, and great grandmother did not. I feel blessed to have this opportunity to make a better future for myself and for those I love. Cancer can really be just a word to me, not a sentence.
So, please, before you judge the choices others make, be sure that you know the reasons behind those choices.
Tuesday, January 31, 2012
F.O.R.C.E.
FORCE: Facing Our Risk of Cancer Empowered is an organization that I have utilized since I received my BRCA1+ results. I am pretty sure that I have read every last word on the website. Needless to say, FORCE has been an invaluable resource in my life for the last four years and I know that it will remain so. The organization is based in Florida but there are local chapters around the United States. San Diego had previously had a chapter but then it ceased to exist due to a lack of people being able to allot enough time and whatnot.
I will rewind a bit. I initially learned about FORCE at the genetic counseling appointment with Kris Kalla where I found out my BRCA1+ results four years ago. She suggested that I check out the organization and further educate myself. I did just that. I read all of the latest research available on the website, statistics, I learned what it meant to be a previvor, and I read other peoples' stories. I was overwhelmed. But the knowledge that I gained from FORCE has been a blessing and the women I met through the website have been so helpful.
Now we'll fast forward to a week ago. I received an envelope with the FORCE emblem on it. I ripped it open and found a single sheet of paper. There was an upcoming meeting/dinner on January 26th to meet with other FORCE members and the woman who created the organization, Sue Friedman, was also going to be there. I immediately RSVP'd to the event and asked my parents to attend with me.
Thursday, January 26th came quickly. I spent my morning meeting with my surgeon and spent the rest of the day feeling quite emotional about all of the decisions that I am making. We arrived at the restaurant where the meeting was being held and sat at a table with about 20 other people. I immediately felt at ease. We all shared our stories and it was absolutely wonderful. Then something very emotional happened. I could not stop staring at the woman sitting almost directly across from me. She looked extremely familiar and her voice was one that I remembered distinctly. I turned to my mom and asked if she recognized her and she said she did but that she could not figure out from where. And then it clicked. It was Kris, the genetic counselor who delivered my BRCA1+ results to me. After seeing her a few times in 2008, she left Kaiser and I began seeing a new genetic counselor, but I always had a special attachment to Kris. Back to the dinner. When I had the chance, I reintroduced myself and attempted to remind her of who I was. She remembered! It brought tears to my eyes. She had the job of giving me unpleasant test results and she was absolutely amazing when she did. We caught up and I really look forward to keeping in contact with her. Without her, I do not know if I would be in the place that I am now. When she went through my family history with me (13 women, 9 are BRCA1+, and 7 of the 9 have had cancer), she did her best make me feel as though this did not have to be my future; that I would be taken care of. I will always be grateful to her.
Anyway, the dinner lasted about 3 hours. A few of the women that I was talking to were older and were breast cancer survivors. They were amazing. As BRCA+ women, they assured me that if they had the knowledge that I did, they'd make the same decision that I have made. They assured me that the physical pain after the surgery would subside, that I would still look great, and that my emotional health would actually improve because I would no longer be worrying about cancer constantly. There was another young woman there, she was 25, she had already had her mastectomy and had her tissue expanders in still. It was so helpful to speak to someone my age, who was in the same situation as I, and made the same decision. After I expressed my fears to her, which consist mostly of the physical, end result, she offered to show me hers. Her process was not even over, she still had her expanders in, and she looked amazing. The only difference is that her surgeon did a NSM (nipple-sparing mastectomy), so she did not have the incision scars across the face of the breast like I will. Honestly, part of me wishes that I could have a NSM after seeing her results, but then I remember why I am going through all of this; to cut out as much risk as possible. In addition to that, I do not have a choice. The surgeons at Kaiser will not do a NSM. Regardless, seeing that the shape can look natural and the fact that I have seen nipple reconstruction look extremely natural, I feel really good about the reconstruction process as a whole. The scars that I will have will be prominent when I do not have anything covering my chest but luckily my skin scars well, so I can only hope that they will be light. Also, I will still be able to wear things that I wear now, small bathing suits, low cut tops, etc. I am finally accepting that the discomfort I will face is such a small price to pay for the gift of life.
Several of the women spoke of losing their mothers, their sisters, close friends and as I sat there with my mom, who is a survivor, I could not help but feel extremely blessed. On January 31, 2008, exactly four years ago today, my mom underwent her bilateral mastectomy. I will never forget the strength and grace that she showed through her battle with this ugly disease. Every day I am reminded how lucky I am to have my mommy with me today. The fact that she is still here to watch me grow into a woman and to see me achieve my dreams, is something that a lot of people do not have because breast cancer took that opportunity away from them. I am so incredibly proud to be a survivor's daughter and I am so lucky to have such a strong role model.
All in all, the experience at that FORCE dinner was exactly what I needed. So many things happened, I heard so many stories, and it felt wonderful to know that I had the support of women who have been through it. I was reminded exactly why I am on this journey.
Like I have said before, if you or someone you know seems to have a family history of breast and/or ovarian cancer, check out www.facingourrisk.org to read more and address any concerns you may have with your doctor. This organization has done wonderful things for myself as well as many other families that I know.
“Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle.” – Christian D. Larson
Friday, January 27, 2012
Kudva.
It is not an elective surgery when the alternative is cancer. -Unknown
Dr. Kudva. What an incredible woman. As I had previously shared, I was not comfortable with the first general surgeon that I met with. I expressed that to my plastic surgeon who then referred me to a new general surgeon who he said I would absolutely love. I attempted to make an appointment but she was completely booked. I was told that I would be placed on a waiting list, but the very next day I received a phone call, she had an opening two days later, January 26th. So, I took the appointment despite having to miss class.
Honestly, I was extremely nervous going into this appointment. I knew very little about Dr. Kudva. All I knew is that my plastic surgeon highly recommended her and that she could potentially say no. I have heard of doctors that did not feel comfortable doing a prophylactic mastectomy on younger women, so naturally, I feared the worst. I was early to my appointment (despite missing my exit in Otay Mesa and having to turn around at the Mexican border, oops). Dr. Kudva was running late. I sat in the exam room for about 45 minutes before she finally knocked on the door and entered. What a surprise! She was immediately warm and comforting. She did not sugar coat anything but made me feel at ease and ultimately agreed with my decision; I made a wise decision. My nerves subsided almost immediately. We talked about the process and I expressed my fears. She assured me that she would do her best to keep my incisions as small as possible and that she could actually leave a little more tissue than I had previously thought. All good news.
Then we talked about the reconstruction. I learned a lot more about the process and I had a change of heart. Assuming that my plastic surgeon will agree to it, and I am sure he will, I am going to have immediate reconstruction. That means I will have the mastectomy and in the same surgery, my plastic surgeon will insert my tissue expanders. The risk of infection and tissue death is higher, but it must be noted that a lot of the statistics are with regard to patients who have cancer and are not in good health. Dr. Kudva assured me that I would be more than okay as far as pain is concerned and that most of my troubles would potentially be emotional ones. Having the tissue expanders already in place when I wake up from the mastectomy will make the process a bit easier to handle. She then went on to ask me about my medical history, my lifestyle, and my relationship status among other things. It felt good to finally speak to a female doctor about this. I felt as though Dr. Sinow understood why good results are so important to me, but unless you are a woman, I don't think you could ever fully understand. I expressed to Dr. Kudva that yes, losing my breasts will be difficult because I have always felt that they make me a woman and honestly I love mine, but they are just not worth the risk. And then she said something that really resonated with me. She stopped me and said "your breasts do not make you a woman, they do not define you" and then she pointed to her heart and said "this is what makes you a woman and that is all you need". Now typically I am not very outwardly emotional, at least not with people I am unfamiliar with, but I could not help but tear up. She was right. And I needed to hear that. I will carry those words with me throughout this process and on into the future.
We ended the appointment after about 30-45 minutes and I left feeling extremely positive and far more comfortable than before. She ultimately agreed to do my surgery, she agreed to work with my plastic surgeon in scheduling a date that works with their schedules but also with mine so that I will not have to miss school, and she assured me that I am making a wise decision, especially with my family history.
So what's the next step? I will be getting a breast MRI shortly and assuming that the scans are clear, a final surgery date will be set and I will proceed with the rest of my pre-op appointments. I am really looking forward to seeing my plastic surgeon and discussing more specifics regarding my reconstruction: size, type, etc. I could not be more grateful for the team of amazing doctors that Kaiser Permanente has provided me with. Everything is falling into place and as each day passes, this decision becomes more real and I find myself feeling upbeat and positive about it.
Dr. Kudva. What an incredible woman. As I had previously shared, I was not comfortable with the first general surgeon that I met with. I expressed that to my plastic surgeon who then referred me to a new general surgeon who he said I would absolutely love. I attempted to make an appointment but she was completely booked. I was told that I would be placed on a waiting list, but the very next day I received a phone call, she had an opening two days later, January 26th. So, I took the appointment despite having to miss class.
Honestly, I was extremely nervous going into this appointment. I knew very little about Dr. Kudva. All I knew is that my plastic surgeon highly recommended her and that she could potentially say no. I have heard of doctors that did not feel comfortable doing a prophylactic mastectomy on younger women, so naturally, I feared the worst. I was early to my appointment (despite missing my exit in Otay Mesa and having to turn around at the Mexican border, oops). Dr. Kudva was running late. I sat in the exam room for about 45 minutes before she finally knocked on the door and entered. What a surprise! She was immediately warm and comforting. She did not sugar coat anything but made me feel at ease and ultimately agreed with my decision; I made a wise decision. My nerves subsided almost immediately. We talked about the process and I expressed my fears. She assured me that she would do her best to keep my incisions as small as possible and that she could actually leave a little more tissue than I had previously thought. All good news.
Then we talked about the reconstruction. I learned a lot more about the process and I had a change of heart. Assuming that my plastic surgeon will agree to it, and I am sure he will, I am going to have immediate reconstruction. That means I will have the mastectomy and in the same surgery, my plastic surgeon will insert my tissue expanders. The risk of infection and tissue death is higher, but it must be noted that a lot of the statistics are with regard to patients who have cancer and are not in good health. Dr. Kudva assured me that I would be more than okay as far as pain is concerned and that most of my troubles would potentially be emotional ones. Having the tissue expanders already in place when I wake up from the mastectomy will make the process a bit easier to handle. She then went on to ask me about my medical history, my lifestyle, and my relationship status among other things. It felt good to finally speak to a female doctor about this. I felt as though Dr. Sinow understood why good results are so important to me, but unless you are a woman, I don't think you could ever fully understand. I expressed to Dr. Kudva that yes, losing my breasts will be difficult because I have always felt that they make me a woman and honestly I love mine, but they are just not worth the risk. And then she said something that really resonated with me. She stopped me and said "your breasts do not make you a woman, they do not define you" and then she pointed to her heart and said "this is what makes you a woman and that is all you need". Now typically I am not very outwardly emotional, at least not with people I am unfamiliar with, but I could not help but tear up. She was right. And I needed to hear that. I will carry those words with me throughout this process and on into the future.
We ended the appointment after about 30-45 minutes and I left feeling extremely positive and far more comfortable than before. She ultimately agreed to do my surgery, she agreed to work with my plastic surgeon in scheduling a date that works with their schedules but also with mine so that I will not have to miss school, and she assured me that I am making a wise decision, especially with my family history.
So what's the next step? I will be getting a breast MRI shortly and assuming that the scans are clear, a final surgery date will be set and I will proceed with the rest of my pre-op appointments. I am really looking forward to seeing my plastic surgeon and discussing more specifics regarding my reconstruction: size, type, etc. I could not be more grateful for the team of amazing doctors that Kaiser Permanente has provided me with. Everything is falling into place and as each day passes, this decision becomes more real and I find myself feeling upbeat and positive about it.
Monday, January 16, 2012
Plastic.
January 12th was a big day. I met my plastic surgeon, Dr. Sinow, who will be doing my reconstruction. My first impression of him was a good one and after sitting in his office for over two hours, I felt completely at ease with both him and my decision.
We spent a short amount of time discussing personal topics such as law school, my relationship status, why I wanted to go through with the surgery, etc. He informed me that a large portion of the surgeries he performs are for mastectomy patients and that given my genetic mutation he would advocate that I make the decision I have made. The rest of the appointment was spent talking about my options for reconstruction and the process itself.
The reconstruction may be done in one of three ways: implants, TRAM flap, or back flap. I do not have any fat or excess tissue in my lower abdomen therefore I am not a candidate for the TRAM flap reconstruction and doctors typically won't perform a back flap reconstruction unless the patient has gone through radiation and it tends to be more of a last resort. So, it was quickly established that I will be undergoing implant reconstruction. He went through great care to explain, very thoroughly, the process of the reconstruction, what I should expect, and any potential risks. I've come to realize that this is going to be an extremely long process but I suppose that what I will endure in the coming months will be nothing compared to what I would have to endure if I were to get sick in the future.
Obviously the first step will be to undergo the mastectomy. I have not yet chosen my surgeon for that surgery, as the first one I saw did not leave me feeling comfortable. My plastic surgeon suggested a different surgeon and I will be meeting her at the beginning of February. Once I have the mastectomy I will heal for two weeks. Some people do opt for immediate reconstruction while in the operating room for their mastectomy, however the risk of tissue death and infection is anywhere from 30-50% and would delay the healing process. Dr. Sinow said that I am a great candidate for immediate reconstruction due to my health and weight, however, I do not want to take on that high of a risk. So, once I heal from the initial surgery, the reconstruction will be begin. My first surgery will be to insert small, saline-filled tissue expanders, under the chest muscle. The expanders will be injected with saline fluid every few weeks for about three months. This is to create a breast mound and create more tissue to work with once the permanent implants are inserted. After the three months pass, I will then undergo surgery to have my permanent implants put in. I have yet to decide between saline, silicone, or silicone gel. Each have their benefits and each have their downsides. I'm leaning toward silicone, but fortunately I have time to research my options and make an informed decision. After I heal, another two weeks or so, I will undergo a final surgery to make any necessary adjustments and to have the finishing touches added to my new ladies.
Most of my concerns have been superficial, that I would not be able to wear bikinis like I do now, or low cut tops, or that my scars would show in a wedding dress, however that won't be the case. Dr. Sinow assured me that I will be able to do all of those things without a problem. Because I am a smaller woman, the incisions and the subsequent scars will be small and limited to the breast itself, not extending across my chest at all. Big positive! Another positive is that by breaking the reconstruction up into several surgeries, the recovery time is much shorter. Dr. Sinow told me that I will be able to run after each surgery by week two, which is very important to me.
I've been trying my damnedest to find the silver lining in this whole process; aside from the obvious health benefits. Many people have asked questions regarding "why" I would do something so radical at such a young age, honestly, I see no other option. Sure, I will never be the same physically, but I am secure enough with myself to know that I am more than a pair of breasts. I feel very confident in my doctor and his ability to give me the best results possible. I've seen photos and aside from prominent scarring, most reconstructions very closely resemble real breasts. I have also been asked several times about dating. It is not a secret that after 4 1/2 years, I am now single. People have asked, what if a man can't understand why you aren't "normal". The way I see it is that, if I am dating someone, not only will I be very upfront about my body when the time is right, but that if a man cannot accept that part of me and embrace it, not only is he not a man, he is also not deserving. I am going forward with this surgery to make sure that I am around for a very long time. I do not want to live in fear and I do not want my loved ones to live in fear. If I did get sick in the future, not only would I not want to go through that, but I would be heartbroken having to put my family through that. What about law school? Well, a majority of the process will occur during my summer break, so long as everything goes as planned. I have an amazing job opportunity with a retired judge who will be helping me by providing me with a job that will be easy on me while I am recovering. A portion of the process will interfere with the Fall 2012 semester, however I am very fortunate to have amazing friends and family who have offered to help me carry books, drive me to school, etc.
So what's next? I am scheduled to have a breast MRI at UCSD medical center this month. This is to make sure that I am healthy prior to surgery. When you undergo a prophylactic mastectomy, so long as the breast is healthy, they are able to leave a little more tissue than they would on a cancerous breast. After that, I will be meeting a new general surgeon for a second opinion. I've heard nothing but wonderful things about her and I hope that she will take my case. Then I will be meeting with my plastic surgeon again to make final decisions regarding the reconstruction process. Once that is done, the surgeons will coordinate their schedules and we will set a date!
Thank you again for all of the loving messages, phone calls, and support. I would not be able to do this without all of you. This has been an extremely taxing decision to make but with each day that passes, I realize that this will only bring positive results. Sure, it's going to hurt, but I can handle that. What I cannot handle is living with cancer on my mind. I want to deal with this on my own terms, not breast cancer's terms.
We spent a short amount of time discussing personal topics such as law school, my relationship status, why I wanted to go through with the surgery, etc. He informed me that a large portion of the surgeries he performs are for mastectomy patients and that given my genetic mutation he would advocate that I make the decision I have made. The rest of the appointment was spent talking about my options for reconstruction and the process itself.
The reconstruction may be done in one of three ways: implants, TRAM flap, or back flap. I do not have any fat or excess tissue in my lower abdomen therefore I am not a candidate for the TRAM flap reconstruction and doctors typically won't perform a back flap reconstruction unless the patient has gone through radiation and it tends to be more of a last resort. So, it was quickly established that I will be undergoing implant reconstruction. He went through great care to explain, very thoroughly, the process of the reconstruction, what I should expect, and any potential risks. I've come to realize that this is going to be an extremely long process but I suppose that what I will endure in the coming months will be nothing compared to what I would have to endure if I were to get sick in the future.
Obviously the first step will be to undergo the mastectomy. I have not yet chosen my surgeon for that surgery, as the first one I saw did not leave me feeling comfortable. My plastic surgeon suggested a different surgeon and I will be meeting her at the beginning of February. Once I have the mastectomy I will heal for two weeks. Some people do opt for immediate reconstruction while in the operating room for their mastectomy, however the risk of tissue death and infection is anywhere from 30-50% and would delay the healing process. Dr. Sinow said that I am a great candidate for immediate reconstruction due to my health and weight, however, I do not want to take on that high of a risk. So, once I heal from the initial surgery, the reconstruction will be begin. My first surgery will be to insert small, saline-filled tissue expanders, under the chest muscle. The expanders will be injected with saline fluid every few weeks for about three months. This is to create a breast mound and create more tissue to work with once the permanent implants are inserted. After the three months pass, I will then undergo surgery to have my permanent implants put in. I have yet to decide between saline, silicone, or silicone gel. Each have their benefits and each have their downsides. I'm leaning toward silicone, but fortunately I have time to research my options and make an informed decision. After I heal, another two weeks or so, I will undergo a final surgery to make any necessary adjustments and to have the finishing touches added to my new ladies.
Most of my concerns have been superficial, that I would not be able to wear bikinis like I do now, or low cut tops, or that my scars would show in a wedding dress, however that won't be the case. Dr. Sinow assured me that I will be able to do all of those things without a problem. Because I am a smaller woman, the incisions and the subsequent scars will be small and limited to the breast itself, not extending across my chest at all. Big positive! Another positive is that by breaking the reconstruction up into several surgeries, the recovery time is much shorter. Dr. Sinow told me that I will be able to run after each surgery by week two, which is very important to me.
I've been trying my damnedest to find the silver lining in this whole process; aside from the obvious health benefits. Many people have asked questions regarding "why" I would do something so radical at such a young age, honestly, I see no other option. Sure, I will never be the same physically, but I am secure enough with myself to know that I am more than a pair of breasts. I feel very confident in my doctor and his ability to give me the best results possible. I've seen photos and aside from prominent scarring, most reconstructions very closely resemble real breasts. I have also been asked several times about dating. It is not a secret that after 4 1/2 years, I am now single. People have asked, what if a man can't understand why you aren't "normal". The way I see it is that, if I am dating someone, not only will I be very upfront about my body when the time is right, but that if a man cannot accept that part of me and embrace it, not only is he not a man, he is also not deserving. I am going forward with this surgery to make sure that I am around for a very long time. I do not want to live in fear and I do not want my loved ones to live in fear. If I did get sick in the future, not only would I not want to go through that, but I would be heartbroken having to put my family through that. What about law school? Well, a majority of the process will occur during my summer break, so long as everything goes as planned. I have an amazing job opportunity with a retired judge who will be helping me by providing me with a job that will be easy on me while I am recovering. A portion of the process will interfere with the Fall 2012 semester, however I am very fortunate to have amazing friends and family who have offered to help me carry books, drive me to school, etc.
So what's next? I am scheduled to have a breast MRI at UCSD medical center this month. This is to make sure that I am healthy prior to surgery. When you undergo a prophylactic mastectomy, so long as the breast is healthy, they are able to leave a little more tissue than they would on a cancerous breast. After that, I will be meeting a new general surgeon for a second opinion. I've heard nothing but wonderful things about her and I hope that she will take my case. Then I will be meeting with my plastic surgeon again to make final decisions regarding the reconstruction process. Once that is done, the surgeons will coordinate their schedules and we will set a date!
Thank you again for all of the loving messages, phone calls, and support. I would not be able to do this without all of you. This has been an extremely taxing decision to make but with each day that passes, I realize that this will only bring positive results. Sure, it's going to hurt, but I can handle that. What I cannot handle is living with cancer on my mind. I want to deal with this on my own terms, not breast cancer's terms.
Tuesday, January 10, 2012
Positive.
December 24, 2007 is a day that I will never forget. That was the day that my sweet mom informed our family that she had been diagnosed with breast cancer. After speaking with her physician and examining our family's history of female cancers, as we have lost many women in our family to both breast and ovarian cancer, my mom was tested for a genetic mutation (of which we were previously unaware) that as early as 1990 was being linked to cases of breast cancer where there was a strong family history of female cancers. The proteins that suffer from the mutations are referred to as BRCA 1 or BRCA 2. So, shortly after her diagnosis, my mom's genetic test came back as positive for a BRCA 1 mutation.
April 15, 2008. My mom was in the midst of her battle with breast cancer. She was fully recovered from her bilateral mastectomy and enduring the harshness of chemotherapy treatments. The next step was to meet with a genetic counselor to discuss my risk of developing breast cancer and to be tested for the BRCA mutation. That day I had one tube of blood drawn and went home to sit and wait.
April 30, 2008. After 15 days I found myself, 19 years old, sitting in a room at Kaiser Permanente with my mom and our fabulous genetic counselor (more about her in another post) awaiting the verdict. During the two weeks I was waiting for results I had begun to research what it would mean for my future should I test positive. I knew that I had a 50% chance of having the mutation and I knew that should I test positive, I would have to make big decisions regarding my future. I remember sitting in the room with my mom, she kept telling me "well, maybe you'll be negative", but I had a feeling I would not be receiving such news. Our genetic counselor entered the room, opened up a purple folder that contained the test results, and informed me that I was BRCA 1 positive. She gave me numerous pieces of literature and discussed steps that I could take to reduce my risk. I really cannot remember anything she said in the moments immediately following the news, other than agreeing that I would receive special breast MRIs and regular clinical breast exams to make sure that if any cancer did develop, it would be caught at an early stage. I also began seeing a gynecological oncologist to discuss my increased risk for ovarian cancer. After many appointments with many doctors, I felt confident that we had implemented the best surveillance plan for me.
As a BRCA 1 carrier, I face an 87% chance of developing breast cancer in my lifetime. The general population faces a 7% risk. I also face a 44% chance of developing ovarian cancer, while the general population faces a <2% chance. (These statistics vary based on what source is referenced, however these are representative of what I have consistently heard).
January 9, 2012. Today I sit here, about four years from the day that my mom tested positive for the BRCA 1 mutation. In the last four years I have spent days on end researching the risks that I face, networking with many organizations, and speaking with other young women who also face the same risk. After four long years of deliberation, I have made a very big decision. This year, assuming all goes as planned, I will undergo a prophylactic bilateral mastectomy and complete reconstruction. With this surgery I will reduce my cancer risk by 90%. I can live a normal life without having to worry excessively.
I have struggled with whether or not I wanted to broadcast my decision to the masses and after a lot of deliberation and with the support of family and close friends, I have decided that openly discussing my journey may help others. I know that this decision is not for everybody and I know that not every one can understand why someone would make such a radical choice, but I truly feel as though this is the right thing for me and if only one person learns something from reading this, I have done my part in raising awareness.
I will not let an increased risk of cancer define who I am. I am a previvor.
If you or someone you know has a family history of breast and/or ovarian cancer there are several resources available and they are resources that I utilize actively.
www.facingourrisk.org
www.bebrightpink.org
www.youngsurvival.org
April 15, 2008. My mom was in the midst of her battle with breast cancer. She was fully recovered from her bilateral mastectomy and enduring the harshness of chemotherapy treatments. The next step was to meet with a genetic counselor to discuss my risk of developing breast cancer and to be tested for the BRCA mutation. That day I had one tube of blood drawn and went home to sit and wait.
April 30, 2008. After 15 days I found myself, 19 years old, sitting in a room at Kaiser Permanente with my mom and our fabulous genetic counselor (more about her in another post) awaiting the verdict. During the two weeks I was waiting for results I had begun to research what it would mean for my future should I test positive. I knew that I had a 50% chance of having the mutation and I knew that should I test positive, I would have to make big decisions regarding my future. I remember sitting in the room with my mom, she kept telling me "well, maybe you'll be negative", but I had a feeling I would not be receiving such news. Our genetic counselor entered the room, opened up a purple folder that contained the test results, and informed me that I was BRCA 1 positive. She gave me numerous pieces of literature and discussed steps that I could take to reduce my risk. I really cannot remember anything she said in the moments immediately following the news, other than agreeing that I would receive special breast MRIs and regular clinical breast exams to make sure that if any cancer did develop, it would be caught at an early stage. I also began seeing a gynecological oncologist to discuss my increased risk for ovarian cancer. After many appointments with many doctors, I felt confident that we had implemented the best surveillance plan for me.
As a BRCA 1 carrier, I face an 87% chance of developing breast cancer in my lifetime. The general population faces a 7% risk. I also face a 44% chance of developing ovarian cancer, while the general population faces a <2% chance. (These statistics vary based on what source is referenced, however these are representative of what I have consistently heard).
January 9, 2012. Today I sit here, about four years from the day that my mom tested positive for the BRCA 1 mutation. In the last four years I have spent days on end researching the risks that I face, networking with many organizations, and speaking with other young women who also face the same risk. After four long years of deliberation, I have made a very big decision. This year, assuming all goes as planned, I will undergo a prophylactic bilateral mastectomy and complete reconstruction. With this surgery I will reduce my cancer risk by 90%. I can live a normal life without having to worry excessively.
I have struggled with whether or not I wanted to broadcast my decision to the masses and after a lot of deliberation and with the support of family and close friends, I have decided that openly discussing my journey may help others. I know that this decision is not for everybody and I know that not every one can understand why someone would make such a radical choice, but I truly feel as though this is the right thing for me and if only one person learns something from reading this, I have done my part in raising awareness.
I will not let an increased risk of cancer define who I am. I am a previvor.
If you or someone you know has a family history of breast and/or ovarian cancer there are several resources available and they are resources that I utilize actively.
www.facingourrisk.org
www.bebrightpink.org
www.youngsurvival.org
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