CDC Symptom Diary Card

Friday, September 15, 2017

Facing Our Immortality Retreat: Nov 2-5 of 2017

Please help support: Facing Our Immortality Retreats via Go Fund Me

Blessings to all of my readers.  I pray you are well and that your treatments are enhancing your lives as you continue to experience whatever comes towards you.  If you have been in a hurricane disaster zone I pray for your recovery and that you can continue to receive your medical care uninterrupted, This was such a tragedy for people in Texas and Florida.

I am still on Zejula but at a reduced dose.  The 300 mg per day dosage debilitated me because of the side effects. I took a 30 day break and resumed on a lower dose of 200 mg per day in the beginning of August.  So far it is manageable but it's only been 2 weeks.  My intestines are damaged and I probably have quite a bit of scar tissue from the original surgery to remove my cancer in 2009. I was not getting enough sleep and felt like a zombie, literally.

I am already disabled so the extra side effects were are unwelcome.  I go back and forth because the truth is that I don't want to experience side effects that mimic front-line treatment when I am on maintenance therapy.  However, I do have confidence in Zejula so it is a matter of finding a tolerable balance.

Avastin will be too hard on my kidneys if I resume but it is still an option if my current regimen cannot be continued.

I was a little lost this past year on a personal level. I wanted to be a postulant in consideration for the sisterhood but was devastated when I found out I am too old. It really threw me for a loop because the truth is I have no career goals, I just want to serve God. I want what remains of my life to be put to the Lord's use but hearing Him is difficult at this time. I don't know why.  I am overwhelmed with the world sometimes and have so much gratitude that I can do what I do.  That I get to mass every week is a true blessing!

So some other things fell in my lap, like participating in pro-life events and groups.  I cannot work but wouldn't mind adding to my newsletter writing for small fees.  I love animals and spent a little time volunteering online to help rescue animals abandoned due to Hurricane Harvey.  I am a lector at my parish.  I am sleeping 12 hours per day again.

I see my dad once per month, praise God, and a cousin once per month as well. I see a great aunt and uncle from Kansas every other month when they visit Colorado.  My sweet kit kat Marilyn is still beside me guarding me against the blues every day.  My days are filled with prayer and I hope to do some soapmaking as the fall season draws near.

I am all turned around though.  Searching for a real purpose/vocation has been my biggest burden since day one with ovarian cancer.  I am sure you all can understand this. I am single and not having a family can be depressing.  I want someone to take care of.  I want to help others.  I also want to go to a beach for awhile...ha!

I just don't know now what God wants me to do.  I thought it was to be in the sisterhood and I was wrong.  So now I am lost again.  Please pray for me to find my purpose and to be able to fulfill it.

Please also share this upcoming retreat with anyone in south Texas who wants to attend our retreat.  I have a dedicated website for the retreats: Facing Our Immortality

God Bless you!


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 Inspire.com 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
REVISED SJR17-031
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Kagan and Tate, Hooton,

SENATE SPONSORSHIP HOUSE SPONSORSHIP
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Senate Committees
House Committees
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SENATE JOINT RESOLUTION 17-031 CONCERNING RECOGNIZING "NATIONAL OVARIAN CANCER AWARENESS MONTH".

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.
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