Yesterday I heard yet again another story about a young
woman with ovarian cancer. She
went in for a scheduled cesarean section and in doing so the doctors found a tumor on
her ovary. What started out as an exciting and precious day with the joy of
having a healthy new baby became conflicted with the knowledge of ovarian cancer. What I understand to be true is that
she had no symptoms and was feeling healthy and strong. That is what makes this
disease so deadly, often when you do get symptoms, the cancer is in the later
stages making it a tough battle to fight. It is important to “get your annual exams and screenings and
know your families medical history," says former Olympic gymnast and gold medal
winner Shannon Miller who just recently battled ovarian cancer. The Mesothelioma Cancer Alliance interviewed Shannon about her
recent battle with ovarian cancer which I posted below.
What I found most interesting from this article was that she was just
going in for a routine check up, almost didn’t go and was NOT having any
symptoms even though she had a tumor on her ovary the size of a baseball. www.mesothelioma.com/blog/authors/staff/from-olympic-gold-to-ovarian-cancer-our-interview-with-former-us-gymnast-shannon-miller.htm
Monday, August 6, 2012
Monday, July 2, 2012
Awareness
It may seem strange how open and forward I have been about talking about my brca1 mutation and the preventative measures I have chosen to take but I believe bringing awareness about this subject can and will save lives. My mom took the initiative to get tested for the brca gene mutation after taking a good look at the cancer in our family linage, which included her own breast cancer. She has always been proactive about her health, having regular exams and having self awareness of her body, but now with the knowledge of the brca1 mutation the doctors watch her closely. She was immediately advised to have her fallopian tubes and ovaries removed which lead to the awareness of her fallopian tube cancer that was not yet detected. That was almost two years ago now. After chemotherapy, a total hysterectomy and a good solid year, she was back to her energetic self again. Although she felt great, she complained about random abdominal pain and pressure. She continued to insist that she get tested until they find out what was wrong. My mom has always taught me over the years that you must be an advocate for your own health. "Follow your gutt feelings and ask for tests to be done," she would say. The doctors tested her CA 125 levels. This is a test that measures a certain protein in the blood, a tumor marker, and if it measures a high number CAN be a detection of ovarian/fallopian tube cancer. For more information about this test and what it is go to: http://www.medicinenet.com/ca_125/article.htm
From there she had a body scan, an MRI, and a brain scan. They found she has a tumor on her lung, cancer cells in the fluid of her lung and some microscopic cancer cells in her abdominal region. The fallopian tube cancer had surfaced again. Apparently, some dorm-it cells were not killed in the chemotherapy treatment two years ago and decided to make an appearance again in new locations. She is currently taking two different chemotherapy drugs that are in the second stages of a drug trial that are specifically for ovarian and fallopian tube cancer patients and have proven to be very effective with brca1 patients. Her spirits are high and she is feeling strong and optimistic. Again, the awareness of having the brca1 mutation and being an advocate for her own health has continued to save her life. Following my Mom's lead, my sister and I also took the direct proactive measure and had our fallopian tubes and ovaries removed therefore cutting our chances of getting ovarian and fallopian tube cancer to 1-2%. Those are odds I surly can live with.
I'm not saying the whole world should run out and get this test done- it's not necessary for everyone and can be expensive if your insurance does not cover it. Just be aware and take note if:
1. There has been multiple cases of breast cancer and/or ovarian and fallopian tube cancer in your family, especially if they were under the age of 50 years old.
2. If you are from a Ashkenazi Jewish descent. Rearchers have discovered that woman from an Ashkenazi Jewish descent are more likely to have the brca1 or 2 mutation then the general population. It's as many as 1 and 40 (2.65%) compared to the general population of 1 and 500 (.02%).
If you want more information about this test and weather it is right for you, just ask your doctor who can put you in contact with a genetic counselor. Awareness is the key and has made all the difference in the world to MY family.
Most importantly, to my Mom who continues to amaze me everyday with her wisdom, strength and insight. You are an inspiration and a hero to me and to so many others. Thanks for being wonderful you. I love you.
From there she had a body scan, an MRI, and a brain scan. They found she has a tumor on her lung, cancer cells in the fluid of her lung and some microscopic cancer cells in her abdominal region. The fallopian tube cancer had surfaced again. Apparently, some dorm-it cells were not killed in the chemotherapy treatment two years ago and decided to make an appearance again in new locations. She is currently taking two different chemotherapy drugs that are in the second stages of a drug trial that are specifically for ovarian and fallopian tube cancer patients and have proven to be very effective with brca1 patients. Her spirits are high and she is feeling strong and optimistic. Again, the awareness of having the brca1 mutation and being an advocate for her own health has continued to save her life. Following my Mom's lead, my sister and I also took the direct proactive measure and had our fallopian tubes and ovaries removed therefore cutting our chances of getting ovarian and fallopian tube cancer to 1-2%. Those are odds I surly can live with.
I'm not saying the whole world should run out and get this test done- it's not necessary for everyone and can be expensive if your insurance does not cover it. Just be aware and take note if:
1. There has been multiple cases of breast cancer and/or ovarian and fallopian tube cancer in your family, especially if they were under the age of 50 years old.
2. If you are from a Ashkenazi Jewish descent. Rearchers have discovered that woman from an Ashkenazi Jewish descent are more likely to have the brca1 or 2 mutation then the general population. It's as many as 1 and 40 (2.65%) compared to the general population of 1 and 500 (.02%).
If you want more information about this test and weather it is right for you, just ask your doctor who can put you in contact with a genetic counselor. Awareness is the key and has made all the difference in the world to MY family.
Most importantly, to my Mom who continues to amaze me everyday with her wisdom, strength and insight. You are an inspiration and a hero to me and to so many others. Thanks for being wonderful you. I love you.
Wednesday, March 7, 2012
"I LOVE YOU"
As I was walking to my car, leaving a play establishment with my kids, I noticed a woman with dark brown hair with bright colored streaks in it. We were the only two cars left in the lot and I had parked one spot over from her. I felt compelled to chat with her so I buckled my kids in their seats and said hello. For those who know me well, you may remember stories I have told about what happens when I make chit chat with strangers- I probably shouldn't do it but my personality got the better of me and I approached her. I commented on her hair and how I liked it and we started to talk. She told me her hair grew back thin from the chemotherapy and radiation she had from having breast cancer. Come to find out she is BRCA2. With me having BRCA1 we instantly had a connection. She got breast cancer when she was only 30. She shared briefly how hard it was to be too weak to care for her 18 month old baby while going through treatments and her double masectomy. She had just had a FULL hysterectomy 8 weeks ago that she said was recommended by her doctors because of the gene mutation and having had the cancer in her breasts. I shared with her my decision to have the preventative surgeries but had to keep it short because of my vocal 3 year old who was ready to go home and have lunch. I gave her a hug and while walking back to my car, intending to say something like, "It was great meeting you"or "I love that we met- what a coincidence", instead blurted out -" I LOVE YOU!" Then said "I mean- I love that we met- um..." I put my head down and closed the car door and drove off laughing. We did exchange email addresses but I have the feeling I won't be hearing from her anytime soon. I DID love the interaction we had though. It reminded me that even though we are all on our own journeys, maybe even feeling a little isolated at times on this big ole planet we live on, that we are all some how connected more than we realize. So I say, let's all just be a little nicer to one another. You don't have to tell strangers that you love them but a smile goes a long way.
Friday, February 17, 2012
Getting to the Place of Certainty
I decided to start to talk about my journey with brca1 about 8 months after finding out I was positive for the mutation. When I started my blog I had already gone through the stages of what I was going to do with this new information and had already made some plans. People often asked me about the process to getting to that place of certainty. So with that said, I will attempt to fill in a few of the holes missing from this journey I began over a year ago now.
Since I have come forward with not only having the brca1 mutation but also what I am going to do about it, I have been getting responses like, "I would do the same" or "smart decision" etc... But I must say, as black and white as it might seem- it wasn't always like that for me. I am a person that is a big believer in Eastern medicine. Every month or so I am treated by a Ayurvedic/Chiropractic practitioner that does energetic clearings on me to prevent and heal illness and keep me balanced. I believe in the work and the possibities that surround it. I had to look at the big picture and if I could prevent the cancer from growing in me-for sure. I read articles on line and talked to doctors with both a Western and Eastern perspective. That's when the marathon training came into play. I would run and think about all the angles and choices I had. You see, the doctors won't tell you what to do -you are not sick- it is preventative suggestions. My options are: yearly MRI's with mammograms, ultra sounds, blood tests that keep track of hormone levels; the medication Tamoxifen or having a double mastectomy and hysterectomy. With this all in my head, like Forrest Gump, I would run and run and run and sort out my thoughts. I then started sharing my thoughts with a few people. I don't know what I was thinking or looking for. Was it justification for a decision I had already made deep inside, or was it to hear myself work it out? Either way I needed to go on this ride and a ride it was. One person said if I were going to chop my breasts off they would hold me down and knock some sense into me. She said that I need to print up a picture of a mastectomy and stare at it every morning for a month before I made such a choice. I heard "free boob job" and "It must be a Californian thing"-(in regards to choosing the double mastectomy with reconstructive surgery). Then there was the opinion that with proper testing they would catch it early so why rush into anything or what if they come up with a cure in the meantime. Speaking to friends and family that are also positive for the mutation was comforting yet because they are on their own journey themselves of course will have their own paths that most likely be different than mine. Simply in the end I needed to take all the information and make a choice just for me and trust it. It was a beautiful lesson for me to trust myself that I would do what is right for me and my family know matter what anybody else thought. I actually feel my soul shines a little brighter through it all with this inner confidence I nurtured-as silly as it may sound.
Bottom line-all the options kind of suck. What is most important to me? Certainty. What would make it certain I would not get ovarian/fallopian tube cancer or breast cancer, have my family see me go through chemo and radiation from these cancers or possibly have it take my life? Have the surgeries. I'm not saying I am safe from getting any other cancer or that "my time" for some other reason might not come along sooner than later but what I know for certain is that I will not be another Brca1 breast /ovarian cancer statistic and for me, my husband, daughter and son that sounds pretty good.
I know most of you that are following this blog do not share this similar journey but I believe we all have had to go through challenges that has lead to a fork in the road where we have to make some heavy decisions. All I can say is we all have the answers with in us. Quiet the mind, find peace and listen-then trust the answers.
Since I have come forward with not only having the brca1 mutation but also what I am going to do about it, I have been getting responses like, "I would do the same" or "smart decision" etc... But I must say, as black and white as it might seem- it wasn't always like that for me. I am a person that is a big believer in Eastern medicine. Every month or so I am treated by a Ayurvedic/Chiropractic practitioner that does energetic clearings on me to prevent and heal illness and keep me balanced. I believe in the work and the possibities that surround it. I had to look at the big picture and if I could prevent the cancer from growing in me-for sure. I read articles on line and talked to doctors with both a Western and Eastern perspective. That's when the marathon training came into play. I would run and think about all the angles and choices I had. You see, the doctors won't tell you what to do -you are not sick- it is preventative suggestions. My options are: yearly MRI's with mammograms, ultra sounds, blood tests that keep track of hormone levels; the medication Tamoxifen or having a double mastectomy and hysterectomy. With this all in my head, like Forrest Gump, I would run and run and run and sort out my thoughts. I then started sharing my thoughts with a few people. I don't know what I was thinking or looking for. Was it justification for a decision I had already made deep inside, or was it to hear myself work it out? Either way I needed to go on this ride and a ride it was. One person said if I were going to chop my breasts off they would hold me down and knock some sense into me. She said that I need to print up a picture of a mastectomy and stare at it every morning for a month before I made such a choice. I heard "free boob job" and "It must be a Californian thing"-(in regards to choosing the double mastectomy with reconstructive surgery). Then there was the opinion that with proper testing they would catch it early so why rush into anything or what if they come up with a cure in the meantime. Speaking to friends and family that are also positive for the mutation was comforting yet because they are on their own journey themselves of course will have their own paths that most likely be different than mine. Simply in the end I needed to take all the information and make a choice just for me and trust it. It was a beautiful lesson for me to trust myself that I would do what is right for me and my family know matter what anybody else thought. I actually feel my soul shines a little brighter through it all with this inner confidence I nurtured-as silly as it may sound.
Bottom line-all the options kind of suck. What is most important to me? Certainty. What would make it certain I would not get ovarian/fallopian tube cancer or breast cancer, have my family see me go through chemo and radiation from these cancers or possibly have it take my life? Have the surgeries. I'm not saying I am safe from getting any other cancer or that "my time" for some other reason might not come along sooner than later but what I know for certain is that I will not be another Brca1 breast /ovarian cancer statistic and for me, my husband, daughter and son that sounds pretty good.
I know most of you that are following this blog do not share this similar journey but I believe we all have had to go through challenges that has lead to a fork in the road where we have to make some heavy decisions. All I can say is we all have the answers with in us. Quiet the mind, find peace and listen-then trust the answers.
Thursday, January 19, 2012
East and West-Rest is Best
I am a fan of both Eastern and Western medicine and feel there is definitely a place for both in America. With that said, about 2 1/2 weeks post surgery I visited my ayurvedic/energetic/chiropractic doctor. She reminded me of the stress that a body goes through when having a surgery and how anesthesia can stay in the body weeks after possibly giving me the symptoms I am feeling. She adjusted me, cleared me and reminded me to rest and honor the healing. I had the worst migraines and felt exhausted for the next 2 days after her treatment but have not had a headache since.
I saw my surgeon 3 weeks post surgery. She said my incisions looked good and I am right on track with my healing. She said that my "brain fuzz", which by the way comes now twice a week or less, is because of exhaustion. Ask any new mom and they can relate to the loss of thoughts or like me forgetting where the button is on the TV to turn it on. She said even though I might be sleeping well at night, my body has been through a lot and needs more rest. Ok- so maybe the light jog I went on last week should have been a walk (or a nap). Oh well- lesson learned. When a doctor says you can resume "normal" activities, you must remember "normal" is subjective to each any every person. In the end what I learned from both doctors is that I need to slow down and be patient with the healing. I won't resume my "normal" activities of kick boxing, running, and swim training. I am taking it easy these days and find walking and just being a mom to a 3 and 5 year old enough movement and energy for me and when I'm really being good I'm in bed by 9:45.
I feel that there IS an amount of "leveling out" that a body has to go through while adjusting to the fact it is not producing any estrogen and progesterone and possibly that is contributing to some of my symptoms. My surgeon tells me that all of the estrogen and progesterone should be out of my body 8 weeks post surgery. Who knows- maybe it will be a relatively smooth transition. I feel at peace knowing I have my 2 doctors, that practice 2 very different styles of medicine, available for help if I need it.
I saw my surgeon 3 weeks post surgery. She said my incisions looked good and I am right on track with my healing. She said that my "brain fuzz", which by the way comes now twice a week or less, is because of exhaustion. Ask any new mom and they can relate to the loss of thoughts or like me forgetting where the button is on the TV to turn it on. She said even though I might be sleeping well at night, my body has been through a lot and needs more rest. Ok- so maybe the light jog I went on last week should have been a walk (or a nap). Oh well- lesson learned. When a doctor says you can resume "normal" activities, you must remember "normal" is subjective to each any every person. In the end what I learned from both doctors is that I need to slow down and be patient with the healing. I won't resume my "normal" activities of kick boxing, running, and swim training. I am taking it easy these days and find walking and just being a mom to a 3 and 5 year old enough movement and energy for me and when I'm really being good I'm in bed by 9:45.
I feel that there IS an amount of "leveling out" that a body has to go through while adjusting to the fact it is not producing any estrogen and progesterone and possibly that is contributing to some of my symptoms. My surgeon tells me that all of the estrogen and progesterone should be out of my body 8 weeks post surgery. Who knows- maybe it will be a relatively smooth transition. I feel at peace knowing I have my 2 doctors, that practice 2 very different styles of medicine, available for help if I need it.
Monday, January 9, 2012
Post Surgery 2 1/2 weeks
There is a lot of spelling that goes on in our house with having a 3 and 5 year old around. Last week I attempted to spell the word sister to my husband like this - c-i-c-t-e-r. I repeated it 3 times and began to get frustrated at him for not understanding what I was spelling. Hooray! And so it begins my first symptom of menopause-"brain fog". The lack of estrogen in my body ( and it being surgically induced rather than gradual probably doesn't help) can create symptoms like this one. I know we have probably all had days or moments like this but in my case it has not left me for a week and happens all through the day. I find it difficult to connect thoughts, come up with words, and focus. I sometimes can't remember why I got up to move and my short term memory has suffered too. I did a little research on this and some claim it to be the result of night sweats and lack of sleep but (knock on wood) I have not had those symptoms-it is simply the lack of estrogen. Thank goodness I don't hold a job that requires me to make important decisions or speeches in front of large groups of people. It has been comical though and I take it all in stride knowing this too will pass. Hormone replacement therapy in small doses for a short amount of time is an option. There are also homeopathic remedies that I am actually going to explore first.
Other physical side effects I have noticed on a smaller scale have been headaches, feeling a little nauseous and light headed. I have found that tylenol and something light to eat takes care it.
Yesterday I started to feel anxious and a little irritable. I could see it coming on and starting to fill my body and mind. Before I lost my "perspective" on things I knew I needed to do something. I have been feeling good since my surgery and found if I limit heavy lifting, twisting and bending I feel great. So- I decided to go for a jog. I put on my music and jogged for just over 3 miles. Besides my achey knees it felt great and seemed to do the trick. I highly recommend exercise for (everyone) but specifically woman going through menopause. Here's a link that goes in to the benefits of exercise for menopausal woman. http://www.acefitness.org/fitfacts/fitfacts_display.aspx?itemid=91
Overall recovering from this surgery has not been bad. I find if I listen to my body and respect where it is in the healing process than I am good. It's important to call or email your doctor post surgery for any questions or concerns you may have with healing or your emotions. It's not always a good idea to go on line and see every symptom that may happen during menopause-it can be over whelming and why put symptoms in your head that you may never get.
One last note- Not being able to pick up, hug, or play with my kids or climb into a bunk bed to read them a book during my recovery has made it even clearer to me that I made the right decision with this surgery. My recovery has only been 2 or so weeks-having cancer and going through treatments would have been a hell of a lot longer.
More on those thoughts later...:)
Other physical side effects I have noticed on a smaller scale have been headaches, feeling a little nauseous and light headed. I have found that tylenol and something light to eat takes care it.
Yesterday I started to feel anxious and a little irritable. I could see it coming on and starting to fill my body and mind. Before I lost my "perspective" on things I knew I needed to do something. I have been feeling good since my surgery and found if I limit heavy lifting, twisting and bending I feel great. So- I decided to go for a jog. I put on my music and jogged for just over 3 miles. Besides my achey knees it felt great and seemed to do the trick. I highly recommend exercise for (everyone) but specifically woman going through menopause. Here's a link that goes in to the benefits of exercise for menopausal woman. http://www.acefitness.org/fitfacts/fitfacts_display.aspx?itemid=91
Overall recovering from this surgery has not been bad. I find if I listen to my body and respect where it is in the healing process than I am good. It's important to call or email your doctor post surgery for any questions or concerns you may have with healing or your emotions. It's not always a good idea to go on line and see every symptom that may happen during menopause-it can be over whelming and why put symptoms in your head that you may never get.
One last note- Not being able to pick up, hug, or play with my kids or climb into a bunk bed to read them a book during my recovery has made it even clearer to me that I made the right decision with this surgery. My recovery has only been 2 or so weeks-having cancer and going through treatments would have been a hell of a lot longer.
More on those thoughts later...:)
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