CDC Symptom Diary Card

Thursday, June 01, 2017

Ode To Rabbitgal and Update on Zejula

Dear Friends,

I have had to take a break from all things ovarian cancer for a little while because my bestie died in April. Her screen name was Rabbitgal, after a little pet bunny that she cherished several years ago. She and I were diagnosed just two weeks apart, each stage IIIC.  Both of us were BRCA1+. Devastating.

I believe her cell subtype was different from mine, and her course with cancer was much more difficult.  She concurrently battled a round of breast cancer and all that treatment took a huge toll on her kidneys.  When cancer returned, her body just could not tolerate treatment any more. She really suffered for awhile, it was heartbreaking. When she decided to accept the loving care of hospice everything changed and eventually she left this world in peace, surrounded by her husband and son.  

We used to meet for tea or a visit to the museum up in Seattle, on a regular basis.  We were able to share our battles and talk about how ovarian cancer impacted our lives, about how other women in the community were coping with cancer and about what we saw in the future for the treatment of cancer.  She genuinely, deeply cared about the individuals in our online discussion group.  

I miss her. I don't really have another friend like her, she was quirky, artsy, accepted me for my silliness and big ideals.  She did not persecute me for my belief in the Lord, she liked it that I had a vision for the expansion of faith based cancer retreats for women. She had a huge heart and made us all laugh with her dark sense of humor.  

Once she made me go shopping for new clothes because I always wore the same thing, HA. It was so funny! She made fun of my hair because I always let it be wild.  I kind of feel lost, she was a sister to me.  Perhaps I have survivor's guilt, which is expected.  

I always asked God to take me instead of her because she had a son, a husband, and benefited others much more than I.  She was smarter, more inquisitive and it upsets me that she is no longer here to share these gifts with us.  This feeling is managed by daily prayer, for without it, I would be deeply depressed. We don't have answers but we can have faith.

Rabbitgal documented her history in much more detail than I and I recommend that you take a look at her Friday's Corner posts.  She wanted for women and their spouses/family to use that as a guide to make their lives better when living with ovarian cancer. Go on and join the ovarian cancer support community, look for a member named Rabbitgal.  You will be inspired, I promise.

I miss you Rabbitgal, my dear sister and friend! May you rest in peace with God and may your son and husband be receiving the comfort of the Lord as they go through this most difficult time of grief.

On a side note:
I have started a maintenance therapy using a newly approved medication called Zejula/Niraparib.  This means I have stopped the Avastin once again and will take this new medication daily.  The side effects have me concerned, only because I have a history of low counts prior to cancer.  Plus nausea.....ugh ugh ugh ugh.  Did I say ugh?

My gynonc is fabulous and he is excited about Niraparib.  He said that the research is very promising and that it has been a long time since we have had a new class of drugs approved for maintenance treatment.  

Go to Zejula to learn more about this new PARP inhibitor that appears to increase progression free survival.  

Peace and Blessings
Me on the left and Rabbitgal with her spunky hair, on the right!

Rest In Peace friend!

Wednesday, April 12, 2017

Colorado Passes Joint Resolution Recognizing National Ovarian Cancer Awareness Month April 11, 2017

Thank you to the Bill sponsors:

Here is the bill text. I will publish official certificate once signed by the Governor.

Regular Session Seventy-first General Assembly STATE OF COLORADO
LLS NO. R17-1111.01 Joel Moore x4497
Kagan and Tate, Hooton,

Senate Committees
House Committees


WHEREAS, Ovarian cancer remains the leading cause of death from gynecologic cancer among women in the United States; and
WHEREAS, "National Ovarian Cancer Awareness Month" honors all those affected by this cancer and renews our commitment to fighting an illness that takes the lives of many in the United States; and

WHEREAS, Women are often diagnosed with ovarian cancer when it is already at an advanced stage--a problem that can be attributed to a lack of effective early detection technologies and vague symptoms associated with the disease; and

WHEREAS, By learning more about risk factors, knowing the symptoms, and maintaining regular physician consultations, women have their best chance at early detection of ovarian cancer; and

WHEREAS, Through dedicated research, treatment outcomes have improved for many, and a foundation is being built for the development of evidence-based screening, which can help diagnose the disease at the earliest possible stage when the likelihood of a cure is high; now, therefore,

Be It Resolved by the Senate of the Seventy-first General Assembly of the State of Colorado, the House of Representatives concurring herein:

That we, the members of the General Assembly, hereby:

(1) Declare each September to be "National Ovarian Cancer Awareness Month" in Colorado; and

(2) Encourage the citizens of Colorado to wear teal on the first Friday of September every year in honor of ovarian cancer awareness.

Be It Further Resolved, That copies of this Joint Resolution be sent to the Colorado Ovarian Cancer Alliance; the Great West Division of the American Cancer Society; the American Cancer Society Cancer Action Network; HERA Ovarian Cancer Foundation; the Colorado Cancer Coalition; Cancer League of Colorado; the Susan Danapoli Ovarian Cancer Society; the Colorado Medical Society; the Colorado Section of the American Congress of Obstetricians and Gynecologists; and the Colorado Department of Public Health and Environment.
-2- 031 

Wednesday, March 22, 2017

The Trump Administration and the Environment — Heed the Science — NEJM

The Trump Administration and the Environment — Heed the Science — NEJM: Medicine and Society from The New England Journal of Medicine — The Trump Administration and the Environment — Heed the Science

"The quality of the environment is an important determinant of population health. The key stakeholder here is the public, which aspires to have a cleaner, healthier environment. Gallup poll data show continued public concern about the environment, a preference for environmental quality over economic growth, and a majority belief that climate change is a “real problem.”23 In many ways, Trump’s campaign rhetoric on the environment recalled that of Ronald Reagan in 1980. But by the time of his 1984 reelection bid, Reagan had replaced his initial EPA leadership with leaders supportive of environmental goals; their accomplishments would include removal of lead from gasoline and the first EPA funding for studies related to global climate change. The Heritage Foundation, the conservative think tank, opposed Reagan’s warming toward the EPA but argued that his initial EPA leadership had been mistaken in reducing scientific efforts and that evidence was necessary for intelligent approaches to environmental management.24 The new administration would do well to take that lesson to heart." 

As a whole-life democrat, dedicated champion for women's gynecological cancer-care needs, supporter of life from conception to natural death, as #servivorgirl, I support wholeheartedly the New England Journal of Medicine's position piece against the Trump administration's proposed EPA budget cuts.  Our President is willfully making decisions and supporting legislation that will directly hurt the environment, cost jobs and hurt the health of the people in America. He is all about the money honey.

Even if you have not experienced cancer you can understand that the environment can and often does cause some forms of cancer, as well as many other illnesses. It is safe to project that our air, our water, our food sources and sources of sustenance for wildlife will become more toxic. The increase in toxicity will increase cancer rates as well as the number of people with other environmental related illness, which will increase the burden on healthcare and increase the population of people with an inability to work full time.  This will hurt our future, our children and our children's children.

It will ultimately cost more to deal with the consequences of Trump's EPA recommendations and his goal of saving money in the budget will all be for not.

Please share this article with your friends, especially those who do not believe in climate change.  They need to see that Trump's administration is making a serious mistake.

Thank you,