It began, quite simply. My mother wanted me to get the BRCA testing and I did it just to shut her up and leave me alone. You guessed it, she went on about it more than once.
You can't just walk into your Dr.'s office and say "I want the BRCA testing." I had to first make an appointment with my primary care physician~~when I went I took my mother's results with me~~to show the risk I already had.
My primary care then referred me to an oncologist. She then requested the test to be done.
I was thinking I would probably have to go to the University of Illinois Medical department to have this done. Fortunately for me, I was able to have the blood drawn at my local hospital.
There are a couple BRCA genes and right now, I don't even remember which one or comprehensive or whatever I was tested for.
Fill out a little paperwork, draw your blood, send it off, wait for the results.
So, I waited.
Don't remember it taking all that long for the results to come back.
The day after I got the results, we were headed to Grand Bend, Ontario Canada to race with IHRA Nitro Jam~~hence the name nitrogypsy I have.
Imagine if you will~~you have to inventory your whole rig~~top to bottom, side to side; the dog has to have her paperwork, you have to have your paperwork, your meat has to say "product of USA"; you don't know if your rig will be inspected once you get to Canada; you make sure your crew has all their paperwork~~it's your first time into Canada. And then on top of it, you get these positive results that say you are at high risk for ovarian and breast cancer. HBOC~~hereditary breast/ovarian cancer.
Needless to say, it was a STRESSFUL weekend!!!!
Once there, I tried to immerse myself in the usual things~making sure my crew had food, making sure the dog was walked, making sure guys on other crews were fed, making sure the car was working o.k., the list can go on.......
That didn't work too well.
Thank goodness God Speed Ministry was put in my path!! Renee has been a savior!!! She has let me cry on her shoulder, listened to me rant, rave, moan, groan and never once has she told me to put on my big girl panties!!
One morning while there, I walked past her service, it was just ending, and so I talked with her at length. This was the first time she let me cry on her shoulder. She just let me let it all out.
She said something that I have told over and over "it was a gift wrapped in trash." Boy, did she ever hit the nail on the head with that one!! Just because it was crappy news, just because there was something I could do, just because the medical community had the knowledge to administer this test~~didn't make it any easier to hear. Good new wrapped in trash.
Medical knowledge has come so far~~it's great that we can find a way to predict what might happen. In my case, it wasn't if it was going to happen, it was when. I could not go through what my grandmother and my mother went through.
Everyone seems to think I am a strong person. I have news for them, I just like to be in control of things, that does not make me strong, it just makes me controlling. I am trying to be better at letting things go.
Wednesday, May 25, 2011
Sunday, May 22, 2011
Backstory, pt. 2
I guess now it's time to meet my mom, Claudia.
She and I have had our ups and downs, as any other mother/daughter relationship has down through history.
She has been my ally, confidante, enemy, friend, and many more things through our 45 years together.
She is the one who brought me to my decision to have a BSO.
Honestly, I did it all to shut her up.
She was on the frontlines watching her mother die of this horrible disease. She knows firsthand what it's like to watch someone die. For this reason, she is one of the strongest people I know.
For some reason, I have never told her this~~I guess it's way over due.
We all moved from Maryland to Illinois between my freshman and sophomore years of high school. Personally, I am torn between it being the worst decision my parents ever made to maybe one of the best.
It wasn't know at the time that my mom was having an affair. Yep, an affair. I said it. It took me from the time she left in 1983 to a visit to her home in 1991 to finally ask her why she did this to us, our family. Some of it was her, some of it was my dad, none of it was me. And for some reason, I never felt it was my fault. I was 17 when my parents divorced and I stayed with my dad, there was never any question as to it.
She married the man she had the affair with. Still, to this day, I will never understand why she chose someone with five, yes 5 kids, who ranged in age from grade school to high school when she had one kid that was already in high school.
She help raise these five kids, is still married to the man and I still don't like him and he knows it. I tried, believe me, I tried to like him over the years. But he is a very controlling person. I don't think he has ever been physical with her, but he sure is emotionally controlling.
But, thanks to him, and I will never admit it to anyone, she is still alive. Granted, I feel it's only for narcissistic reasons that he nursed her through her cancer, but she is still alive. If she died, there would be no one to care for him. He is a very needy person.
When she called me to tell me she had O.C., I really can't honestly tell you what I felt. It's been over three years now since her diagnosis and chemo treatments and in the years since, she has also had breast cancer. Fighter!!
She had already gone through menopause naturally. In her surgery, they took out everything they could--fallopian tubes, ovaries, appendix and everything else she didn't need. They didn't know how far the cancer cells had grown. She was stage 3c. What that means, in general terms, is that the cancer has spread to outside the ovaries, into the stomach lining, maybe the liver, into the lymph nodes. Five year survival rate is between 20%-50%. Not really great odds if you ask me.
Now I know why every time she gets her CA125 blood test, it's a party!!!
CA125 is an enzyme that is a marker. You can't detect O.C. just from the blood test, you need to have transvaginal ultrasounds in addition.
A woman's yearly exam does not screen for O.C., only cervical.
My mom is a mom, grandmother, wife and many more things. In my journey here, you will get to hear much more about her.
She and I have had our ups and downs, as any other mother/daughter relationship has down through history.
She has been my ally, confidante, enemy, friend, and many more things through our 45 years together.
She is the one who brought me to my decision to have a BSO.
Honestly, I did it all to shut her up.
She was on the frontlines watching her mother die of this horrible disease. She knows firsthand what it's like to watch someone die. For this reason, she is one of the strongest people I know.
For some reason, I have never told her this~~I guess it's way over due.
We all moved from Maryland to Illinois between my freshman and sophomore years of high school. Personally, I am torn between it being the worst decision my parents ever made to maybe one of the best.
It wasn't know at the time that my mom was having an affair. Yep, an affair. I said it. It took me from the time she left in 1983 to a visit to her home in 1991 to finally ask her why she did this to us, our family. Some of it was her, some of it was my dad, none of it was me. And for some reason, I never felt it was my fault. I was 17 when my parents divorced and I stayed with my dad, there was never any question as to it.
She married the man she had the affair with. Still, to this day, I will never understand why she chose someone with five, yes 5 kids, who ranged in age from grade school to high school when she had one kid that was already in high school.
She help raise these five kids, is still married to the man and I still don't like him and he knows it. I tried, believe me, I tried to like him over the years. But he is a very controlling person. I don't think he has ever been physical with her, but he sure is emotionally controlling.
But, thanks to him, and I will never admit it to anyone, she is still alive. Granted, I feel it's only for narcissistic reasons that he nursed her through her cancer, but she is still alive. If she died, there would be no one to care for him. He is a very needy person.
When she called me to tell me she had O.C., I really can't honestly tell you what I felt. It's been over three years now since her diagnosis and chemo treatments and in the years since, she has also had breast cancer. Fighter!!
She had already gone through menopause naturally. In her surgery, they took out everything they could--fallopian tubes, ovaries, appendix and everything else she didn't need. They didn't know how far the cancer cells had grown. She was stage 3c. What that means, in general terms, is that the cancer has spread to outside the ovaries, into the stomach lining, maybe the liver, into the lymph nodes. Five year survival rate is between 20%-50%. Not really great odds if you ask me.
Now I know why every time she gets her CA125 blood test, it's a party!!!
CA125 is an enzyme that is a marker. You can't detect O.C. just from the blood test, you need to have transvaginal ultrasounds in addition.
A woman's yearly exam does not screen for O.C., only cervical.
My mom is a mom, grandmother, wife and many more things. In my journey here, you will get to hear much more about her.
Friday, May 20, 2011
Some backstory, pt. 1
The first entry was why I made this decision, now maybe I need to do some backstory on my life.
My grandmother, Zelda, was diagnosed with ovarian cancer when I was still very young, around seven years old. She lived about 18 months after her diagnosis.
I don't remember being told she had cancer. I don't even remember being told she was sick. I knew she was going to see a lot of doctors and was very sick, but I don't have any memory at all of being told she was sick and how sick she was.
She lived in Glen Daniel, West Virginia all her life, as far as I know. She was a school teacher at Fairdale Elementary School, teaching second grade, at least from my memory it was second grade.
We lived in Maryland, very near John's Hopkins Hospital. I remember her and my grandfather visiting what seemed like very often, but you have to keep in mind I was seven, now I am 45 and looking back and sometimes our memories say one thing when it was really another.
I remember visiting her once in the hospital there. I have a vague memory of what seemed like a lot of people in a small, what was probably a visitor's room. I think she had an i.v. and a hospital gown. I don't know what I felt, but this is the vision that I have carried with me as I have grown older.
I remember later on, after the disease had ravaged her body, of her being at home to die. We would take the train from the station in Baltimore to the station in Prince, WV. I don't remember anything eventful on these train rides, but I remember taking the train. My uncle Tony, my dad's side, would pick us up or drop us off, probably another family member would share in this, but he is the one I remember. One morning, we were going back home and the train was very late, Uncle Tony stayed with my mom and I until the train came. I remember seeing the creek and not ever realized there was one until that morning~~I guess we always got on the train in the dark.
I remember her in the hospital bed with a green oxygen tank next to her; I remember it being early spring and taking daffodils to her that I had cut from the hillside where they lived.
I don't know how many of these trips we made or even how many trips my grandmother and grandfather made from WV to MD, but I remember them.
I remember being at my paternal grandmother's house when the call came in that my grandmother Worley had passed away. I am sure I was very upset, she was my grandmother and I loved her dearly.
I have lots of great memories of being at her home, going with her to her school and being in her class, going to Coal Marsh Baptist Church, going to Lake Stephens every summer.
This year marks the 100th anniversary of her birth. Wish I could remember in what month she was born, will have to get with my mother on that one.
What I am leading up to, in a very round about way, is that I have these memories and I didn't think they made much of an impact on my life, that is until I had to confront my own diagnosis of BRCA positive and my mom getting O.C.
Family history, our memories, what we perceive as our memories, all have an impact on what we choose, why we choose what we choose, even if we don't realize it.
My grandmother, Zelda, was diagnosed with ovarian cancer when I was still very young, around seven years old. She lived about 18 months after her diagnosis.
I don't remember being told she had cancer. I don't even remember being told she was sick. I knew she was going to see a lot of doctors and was very sick, but I don't have any memory at all of being told she was sick and how sick she was.
She lived in Glen Daniel, West Virginia all her life, as far as I know. She was a school teacher at Fairdale Elementary School, teaching second grade, at least from my memory it was second grade.
We lived in Maryland, very near John's Hopkins Hospital. I remember her and my grandfather visiting what seemed like very often, but you have to keep in mind I was seven, now I am 45 and looking back and sometimes our memories say one thing when it was really another.
I remember visiting her once in the hospital there. I have a vague memory of what seemed like a lot of people in a small, what was probably a visitor's room. I think she had an i.v. and a hospital gown. I don't know what I felt, but this is the vision that I have carried with me as I have grown older.
I remember later on, after the disease had ravaged her body, of her being at home to die. We would take the train from the station in Baltimore to the station in Prince, WV. I don't remember anything eventful on these train rides, but I remember taking the train. My uncle Tony, my dad's side, would pick us up or drop us off, probably another family member would share in this, but he is the one I remember. One morning, we were going back home and the train was very late, Uncle Tony stayed with my mom and I until the train came. I remember seeing the creek and not ever realized there was one until that morning~~I guess we always got on the train in the dark.
I remember her in the hospital bed with a green oxygen tank next to her; I remember it being early spring and taking daffodils to her that I had cut from the hillside where they lived.
I don't know how many of these trips we made or even how many trips my grandmother and grandfather made from WV to MD, but I remember them.
I remember being at my paternal grandmother's house when the call came in that my grandmother Worley had passed away. I am sure I was very upset, she was my grandmother and I loved her dearly.
I have lots of great memories of being at her home, going with her to her school and being in her class, going to Coal Marsh Baptist Church, going to Lake Stephens every summer.
This year marks the 100th anniversary of her birth. Wish I could remember in what month she was born, will have to get with my mother on that one.
What I am leading up to, in a very round about way, is that I have these memories and I didn't think they made much of an impact on my life, that is until I had to confront my own diagnosis of BRCA positive and my mom getting O.C.
Family history, our memories, what we perceive as our memories, all have an impact on what we choose, why we choose what we choose, even if we don't realize it.
Wednesday, May 18, 2011
Why I chose what I chose
Seems funny I would choose to name my blog Teal Ribbon and use a purple background~~fact is, I like purple better, simple and plain.
Teal ribbon is for ovarian cancer. My grandmother had it and made it only 18 months~~give or take~~my mom had it and three years later we cheer every time her test results come back and they show negative results. I have not had cancer~~ovarian or any other for that matter.
Last summer, summer of 2010, I had the BRCA testing and was found to be positive for the BRCA gene, right now I don't remember which one~~there are two~~but suffice it to say that the risk of cancer, both ovarian and breast was so great that I decided to have surgery.
For my family, the decision was a "no brainer"~~we weighed the pros and cons of menopause VS. cancer and menopause won out. My surgeon told me about two surgeries I could have: the surgery I had was a prophylactic bilateral salpingo oophorectomy. The surgeon took out both of my ovaries and fallopian tubes. INSTANT menopause!! I opted not to have the second surgery she asked me about: prophylactic bilateral mastectomy--that would have involved removing both breasts and reconstruction surgery. Prophylactic, for those who don't know, just means preventative.
Doing just the BSO took my risk of ovarian cancer down to almost something like 2%--I don't have the organs that would cause the cancer. It took my breast cancer risk down to almost 25%--a percentage I can live with, for now.
It's kind of odd to tell people about this surgery. They tend to think hysterectomy. Well, it's kind of like a hysterectomy in reverse--the surgeons take the uterus and cervix in a hysterectomy and leave the ovaries and fallopian tubes if they can; in my case the surgeon left my uterus and cervix and took the ovaries and fallopian tubes.
Menopause.....what can I say?
It's what I have to deal with now.
But, thankfully, not cancer.
Teal ribbon is for ovarian cancer. My grandmother had it and made it only 18 months~~give or take~~my mom had it and three years later we cheer every time her test results come back and they show negative results. I have not had cancer~~ovarian or any other for that matter.
Last summer, summer of 2010, I had the BRCA testing and was found to be positive for the BRCA gene, right now I don't remember which one~~there are two~~but suffice it to say that the risk of cancer, both ovarian and breast was so great that I decided to have surgery.
For my family, the decision was a "no brainer"~~we weighed the pros and cons of menopause VS. cancer and menopause won out. My surgeon told me about two surgeries I could have: the surgery I had was a prophylactic bilateral salpingo oophorectomy. The surgeon took out both of my ovaries and fallopian tubes. INSTANT menopause!! I opted not to have the second surgery she asked me about: prophylactic bilateral mastectomy--that would have involved removing both breasts and reconstruction surgery. Prophylactic, for those who don't know, just means preventative.
Doing just the BSO took my risk of ovarian cancer down to almost something like 2%--I don't have the organs that would cause the cancer. It took my breast cancer risk down to almost 25%--a percentage I can live with, for now.
It's kind of odd to tell people about this surgery. They tend to think hysterectomy. Well, it's kind of like a hysterectomy in reverse--the surgeons take the uterus and cervix in a hysterectomy and leave the ovaries and fallopian tubes if they can; in my case the surgeon left my uterus and cervix and took the ovaries and fallopian tubes.
Menopause.....what can I say?
It's what I have to deal with now.
But, thankfully, not cancer.
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