Wednesday, February 01, 2017
Breast Cancer Avoidance
In 2012 as I was preparing for a consultation with a breast cancer surgeon for a prophylactic bilateral mastectomy (PBM), my ovarian cancer returned. Due to my recurrence the option of preventative surgery was taken off the table.
I remember at the time my mom had done some research on the BRCA migration within the Ashkenazi Jew population, noting that there was a pocket of people in Southern Colorado/Northern New Mexico carrying the mutation. I am linking that article along with a few other articles on this fascinating research.
I recently was told that our grandmother on my paternal side was of Ashkenazi Jewish heritage, which confirms my dearly departed mom's hunch that my gene was inherited on that side of my family. Now to offer respect to people of the Jewish heritage, I am not exactly sure if our ancestry is actually Ashkenazi or Sephardic, as this is a whole new thing for me to absorb, but there are articles reflecting both populations in terms of the BRCA 1/2 mutation migrating to southern Colorado.
Here is an excerpt from the article in the Smithsonian: http://www.smithsonianmag.com/science-nature/the-secret-jews-of-san-luis-valley-11765512/
"When Wright was told that the mutation was characteristic of Jewish people, she recalled a magazine article about the secret Jews of New Mexico. It was well known that during the late Middle Ages the Jews of Spain were forced to convert to Catholicism. According to a considerable body of scholarship, some of the conversos maintained their faith in secret. After Judaism was outlawed in Spain in 1492 and Jews were expelled, some of those who stayed took their beliefs further underground. The exiles went as far as the New World."
My mom used to tell me that grandma had maintained some rituals that were thought to be Jewish, but could not recall what they were exactly. I am desperate to find out. Those rituals were what made my mom curious as to the heritage of my father's mother, whom was otherwise a spanish Catholic.
At the bottom of this post I will share a few
interesting links on the subject.
Now that I have a window of opportunity for surgery once again, I am scheduled for a PBM this February. My wonderful gynonc was very supportive and successfully facilitated the process. With warning that the breast surgeon may want to convince me otherwise, I met with her and defended my position. Understandably breast surgeons are careful to be certain that patients are emotionally ready to undertake such a drastic surgery as opposed to surveillance (annual breast MRI/MAMMOGRAM). I have been under surveillance since 2010 or 2011, not exactly sure, and I am tired of it.
I just don’t want to have to deal with a second cancer and the surveillance is starting to get depressing and burdensome. It is very expensive and the worry is not completely addressed. The breast surgeon did say that if I stayed on surveillance, breast cancer should be caught in an early stage, but early stage is too many stages. I feel good about my decision, and because I did want this in 2012, confidence about this choice is strong. I am grateful beyond measure that insurance will cover the procedure.
Secondly it is important to discuss genetic testing. In 2010 my test was completed by Myriad Genetics, whereby which pre-approval and coverage for such a test was hard to come by. Today things are different and there are a greater number of testing options available. Thanks to a support group via Colorado Ovarian Cancer Alliance I was informed about a new test by Myriad called HRD testing. This test can better predict the ability of parp-inhibitors to effectively treat cancer in women with a BRCA1/2 mutation.
"By predicting response to PARP inhibitors, myChoice HRD can help physicians select the appropriate therapy for their patients. Both a positive and a negative HRD result can help drive treatment decisions. An HRD positive result indicates the patient is more likely to benefit from treatment with PARP inhibitors such as olaparib and rucaparib, while an HRD negative result indicates that the patient is less likely to respond to PARP inhibitors, and can be spared the time and toxicity associated with an ineffective treatment. myChoice HRD seeks to offer physicians the ability to personalize treatment plans for patients." Myriad Genectics
Peace and an Abundance of Blessings
Friday, January 20, 2017
Cancer Moonshot Webinar Link
UPDATE: Here is the link to the webinar on January 25th: https://youtu.be/ci6GIRh0OmA
As a woman who knows that ovarian cancer comes and goes throughout survivorship I feel very threatened by the push towards removing the Affordable Care Act. I do rely on Medicare to provide coverage for my healthcare. Millions of people suffering with cancer and other long term chronic illnesses feel the same.
Now that Donal Trump has officially been sworn in as our President we must forge ahead as one unified voice standing up for all of the vulnerable and explore our representatives in government to provide legislation that protects affordable healthcare for ALL!
More opinions encouraged...
Peace and Blessings!
Wednesday, December 07, 2016
I came across an article about depression amongst medical students that needs to be shared. Unfortunately I am not surprised by this information. Students should be inspired and supported to perform at optimum levels, not browbeaten to prove their worth.
I used to work in healthcare as an occupational therapist before losing that career to rheumatoid arthritis. Healthcare settings can, certainly not always, be very abusive. I witnessed this first hand. This atmosphere is never good for patients.
Not everyone in the healthcare industry should be a person who provides patient services. There are alternative fields within healthcare, such as lab work, that are less directly involved with patients. But to take an eager, skilled, bright student and beat them down as part of medical boot camp is unethical in my mind. This approach to training kills students, doctors and patients.
Please pray for your medical care team.
Peace and Blessings,
Study: More than a quarter of medical students are depressed, suicidal
Sunday, November 20, 2016
In the wake of the Presidential Election those of us with serious and potentially life threatening diseases are very concerned about what changes may come to the Affordable Care Act.
Pray that politicians know the heart of Jesus as they make critical decisions that will effect the health and outcome of millions of Americans across the USA. God asks us not to worship money and unfortunately money worshippers are running the healthcare system. This has to change. A for-profit healthcare model does not work.
Here are two links that you may find helpful today.
The first is the link to The Divine Mercy Chaplet on You Tube. I am praying this daily, and it will help you to learn this prayer. It is beautiful, calming and connects you in a special way to our Lord.
The Divine Mercy Message and Devotion
The second is the link to Healthcare.gov https://www.healthcare.gov
Plus: I am nominated for a Best Health Blog contest by Healthline.com. I could use your vote
Hi Denise, Congratulations! Nobody Has Ovarian Cancer: The Soft Whispers of a Fierce Blow is nominated for Healthline’s Annual Best Health Blog Contest! Check it out here:
Every year we take a look at the top health blogs to honor & recognize them. This year things may look a little different, as we’ve updated the contest and taken strides to make sure everything runs smoothly & everyone has a good time voting for their favorites! The contest has a nomination period, starting now, until November 21st. After that, you can vote once per day for your favorite blog up until December 12th when the winner will be announced. Once voting begins, we’ll send you a reminder email so you can share with your followers. Remember, the blog with the most votes will receive a $1000 cash prize! Let me know if you have any questions. Congrats and good luck! Maegan -- Maegan Jones
Thank you Meagan Jones for the nomination.
God Bless You All
Tuesday, October 18, 2016
Do you sometimes feel like this? Doing something other than the intended activity??? In this clip I thought I was taking a selfie...ha!
I was up all night with never ending flushes of hot flashes and night sweats. I am not sick, that I know of. Today it has been one hot flash after another, after another, after another. My ears won't stop ringing, I am exhausted beyond measure. I can't get comfortable in my own skin today. Not sure what is going on. I had an infusion of Rituxan and IVIG in the last few weeks, maybe that is it?
I can't focus. So I write in my blog hoping that it will help.
When I feel like I do today I rely on prayer and reflecting on my retreat experiences, along with looking through photos of happy times with loved ones. I don't have the energy to walk outside today.
This little clip was taken at a retreat center near Carroll, IA. I drove Sr. Anne Marie back home from our retreat for women with cancer. She had injured her back. It was an honor. Tiring indeed, but well worth it because I had precious 1:1 time with our Sister in Mary. I knew that she would bring along an abundance of protection for us with her guardian angels.
My mind and heart wander frequently to the memories of our retreat because those times nurtured my spirit and replenished hope for my future, no matter how it is revealed.
Please say a prayer for all those suffering with pain and angst from cancer or any other chronic condition, for those people are in need of light.
Be the light.
God Bless you!
Visit Sr. Anne Marie's retreat: