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The Relay for Life of Frederick County does an annual radiothon with 106.9 The Eagle. This year, as a very small and insignificant part of the committee, I was asked to come by and share my story on the radio!
February 28th, tune in. I'll be at Frederick Memorial Hospital talking live on the air (I think). I'll try to get a more definite time, but I am thinking early evening after work.
Please please please donate to ACS. Its so important that we remain more persistent in our pursuit for a cure. Donate here, or anywhere you feel called to do so.
http://relay.acsevents.org/site/TR/RelayForLife/RFLCY13SA?team_id=1327014&pg=team&fr_id=53218
This is a huge debate. Should parents test their children for known genetic markers for various illnesses? Should I test my two children, ages 5 and 3, for BRCA? Is it beneficial to know sooner rather than later? Is it taking away a person's rights to do with their body what they choose to test someone to young to make their own choice?
TIME magazine debates this very topic in their latest issue. Article- Click Here You will have to create a free account to read beyond the first couple paragraphs.
Genetic tests available include: Alzheimer's, Colon Cancer, Diabetes, Breast Cancer, Autism, Obesity and Early On-Set Alzheimer's.
Would you test your child?
We, Ray and I, chose not to test our children and stand firm behind that decision. Here is our reasoning, it's not beneficial. If one of our children has the BRCA mutation, the consequences will appear most likely much later in life, at least well after 18. And if, in the rare event, they were diagnosed with a cancer related to the mutation before 18, we would not, and I would argue no doctor, would do prophylactic surgery or any preventative measures on a child under the age of 18. I have actually hear of women under the age of 30 being turned down for prophylactic surgery. Because of this, and secondarily, we believe in a woman's and man's right to choose and make decisions for their own body, we have opted not to test. Rather, we will explain their risks and leave the decision in their hands when the time is right. To each their own, as there are compelling arguments on all sides of this debate. This is just own choice for our family and our circumstances.
The American Cancer Society is working on one of it's biggest research projects ever- A ground breaking study that will have an enormous impact on our ability to prevent cancer and create more birthdays!
Tell people about it!
#beaCPS-3Champion
What is CPS-3?
The American Cancer Society will be enrolling participants in CPS-3, their newest research study. CPS-3 (Cancer Prevention Study-3) is a landmark research study that offers those who have NEVER been diagnosed with cancer, the unprecedented opportunity to advance cancer research by participating first-hand in a cancer research study. The study will help researchers to understand the lifestyle, environmental & genetic factors that may cause or prevent cancer.
What is a CPS-3 Community Champion?
CPS-3 Community Champions educate their friends, family and community about CPS-3 and help to promote and drive community enrollment and participation in this lifesaving study.
Who can be a CPS-3 Community Champion?
EVERYONE! can be a Champion and help get the word out. Whether you are cancer free, a caregiver, a cancer survivor, an avid fundraiser for a cure, or interested in honoring friends or loved ones, you can be a champion. No fundraising is involved.
General Responsibilities:
- Work with local staff to promote CPS-3 enrollment to your personal and professional network
- Engage a minimum of 25 qualified individuals in the study
- Participate in the CPS-3 conference calls weekly
- Communicate progress regularly to designated lead
- Understand the long term commitment participants are making to the study
- Follow the research protocol for the study as laid out by ACS
Time Commitment:
2 month time frame, 1-2 hours per week
If interested, in being a Champion, please contact Laurie Frey at laurie.frey@cancer.org or by calling 301-514-2783
I know, that's funny, right? My DEXA scan was normal and it doesn't appear that I have any signs of osteoporosis! Now if only my legs would heal.....
I got back to the Orthopedist Dec. 17th for a follow-up/plan of action. I have been in the walking boot for 4 weeks and I still can't walk much without it before the pain set in. Sometimes its my ankle, sometimes its my shin, sometimes it outside of my knee. All probably from the high and low fractures.
At this point, I hope I can run the Race for the Cure in May! LOL. Swimming and biking until then and trying to love it.
I went today for my DEXA scan to confirm or rule out osteoporosis. It was super quick, and painless. You don't even need to get undressed. I should have the results tomorrow or Monday. I am hoping for the best!
On another note, today is my mother's 62nd birthday. I miss her so much.
I was dreading this day for a while now. I have been unable to effectively stop the pain in my legs after running. I have been seeing an orthopedist who treated me for tendinitis, shin splints and finally ordered an MRI to get a full picture of what was happening. I have multiple fractures and pre-fractures in both shins. I cannot run for at least two weeks while the fractures start to heal. I have to go 14 consecutive days without pain over a 3/10. Should I have pain, I have to start over the two week period. Today doesn't count since I am in pain. I have a walking boot on my left leg. Funny enough, you can't wear two boots, so despite having fractures in both legs, I have the boot on the one that hurts right now since I had to pick just one. Just call me Captain Lieutenant Dan!
While I can't run for my life, I will bike and swim for my life. I MUST keep my weight under control as with menopause I am at increase risk for heart disease. Further, this could all be related to my menopause. The doctor is seeing signs of osteoporosis. He said he just doesn't see this extent of injury in women my age with my stature. I am going to be regimen in my hormone and vitamin therapy daily. I am also going to look into calcium pills, and Boniva (think Sally Field commercials). When I go back to the gynecologist, I am going to ask about tweaking my hormones again. (I called today and they are probably going to order a bone density scan to rule out or confirm osteoporosis)
I have having a hard day emotionally. I feel like, while I am glad I made the decision to have an oopherectomy, and I do feel it saved my life, I am frustrated with the after effects. I am frustrated with not being able to do the activities I want to do.
It has been too long since I wrote. I am happy to report that there is absolutely nothing to report. I think about this blog often, but I just don't have any new information I am burning to get out there.
Recently, I have been thinking about my tattooing and my options. I could go with nipples. I could get flowers. I could leave my albino breast alone. Ray really doesn't care one way of the other. I personally don't either....right now. But I have been looking more and more into mastectomy tattoos.
I think I like the idea of having a nipple on one side and a special meaningful tattoo on the other. I could post pictures of examples, but then I would have to change this to an "adult only" blog. So instead, I am going to urge you to look up on google, or Pinterest or wherever; mastectomy tattoos.
Ray is talking with an artist we have used before. I want the right artist for me and someone that understand the significance of this piece and also understands my story. I need someone that is comfortable working on a breast and can work around an implant.
My idea is a vine with flowers representing each day the children were born, my mother's birthday and Ray's. These are the people I started this journey for. The vine would be vertical along my side with an angel representing my mother at the top near my neck and the word courage just below the crease under my breast. All of this would be intertwined to create one piece. I am very excited about it. Although I have NO idea when it will get done. We don't typically have tattoo money laying around.
The nipple on the other side is free through insurance and I have to schedule that with the licensed nipple tattooer at my surgeon's office. What have my other previving friends done?
