Celebrating 10 Years

This week marks the anniversary of 10 years since my ovarian cancer diagnosis and surgery. Wow!  If someone would have told me that I would still be here, 10 years later, I really would not have believed them.  I have been spending a lot of quiet time lately reflecting on this past decade.

My mom, my sister (and her family), my brother, my father, my aunt, my friends Barb and Craig, and my doctors are the people who carried me for the first few years after that painful time.  My life was literally uprooted. I was without any control, real or imagined.  My faith in God was never in doubt but I quickly realized that what I thought I knew about His plan for me was completely wrong. I never lost my love for Him, I adore Him with all of my being!

At this point in my life I am more peaceful, because I know that eternity is real.  My mom is in heaven and I am yearning for time with her.  I miss her so much it hurts sometimes.  Comfort comes from knowing that she is truly with Jesus, she is safe, she is joyful, she is at peace.

Since my diagnosis I have met some amazing people, forged new and lasting friendships, endeavored in a completely unexpected direction by starting a cancer ministry, and have reconnected with precious friends from long ago.  I have also sadly suffered losses of relationships with people whom I love and hold dear to my heart.  My body is broken but my spirit is strong.

I am grateful for this rickety body, ha!  It doesn't work how I want it to but my heart and soul know that Glory awaits for us all, if we want to accept it.

I pray for you and ask you pray for me.  Please pray for our cancer ministry, Facing Our Immortality.  Please pray for my family, my friends, my doctors, our ministry's religious sisters and my sweet kit kat Marilyn. Pray for each other and ask God to help you.  Develop a relationship with Him so that you don't feel alone.  He loves you.  

Thank you for taking time to catch up with me today.  I hope that you can find joy in your days and your life. Thank you for caring.

Peace and Blessings to you and yours.

Love,
Denise 

Pain

HOPE - Join Us For Tonight's Conference Call

How do we embrace HOPE?

Join us tonight to talk about HOPE with Sr. Anne Marie Walsh, of The Society of Our Lady of The Most Holy Trinity (SOLT).  We started our monthly cancer wellness and spiritual exercise group last fall and it is truly blossoming.

To view our session, please link here.

Peace and Blessings,

Denise

Bone Marrow Biopsy Tomorrow

I must admit I am feeling a little anxious about tomorrow's bone marrow biopsy. I have not written on my blog in a long time and I hope all of my readers haven't forgotten about me.  :-)  The reason for the biopsy is that my absolute neutrophil counts are not recovering after taking breaks from Zejula.

My most recent lab showed them at .3, dangerously low.  Praises to God that I have not contracted any infections since this all started a few months ago.  My fatigue level is extremely high.  I feel like I have no air, no energy and just want to sleep all the time.  My patience is a little weaker than normal.  My body is just not really lovin' me right now, ha.

I had a pulmonary embolism in early August.  Xarelto failed me, Lovenox gives me liver toxicity and after a second pulmonary embolism in October, I am now on Fragmin.  In the midst of all of these issues with blood clots I have had serious issues with my blood counts from Zejula. 

Up until a few months ago we were able to manage my neutropenia by taking breaks from Zejula.  The dose was even lowered to the lowest level of 100 mg per day but my counts cannot stay at a safe enough level to remain on Zejula.  I have excellent care at Anschutz (primary care, gynecology oncology and hematology oncology).  They really want to help me, they care.  I trust them.

We need to rule out secondary cancers.  It would be very unlikely that I have a secondary cancer or new cancer in the bone marrow, I really do believe that.  I was told that it is more likely to be an immune disorder of some sort.  Obviously whatever it turns out to be I pray it is treatable so that I can both resume Zejula or some form of maintenance treatment and that I can get some energy back.

I must always state how grateful I truly am for the time I have on earth, and even though this goes without saying, I want people to know this.  It will take a few weeks to really know what is going on.  When I get results, I'll let you know.

I pray you have a Happy Thanksgiving.  I have so many things to be grateful for, especially family, friends, and the love of God.  Peace to all!

God Bless you!

Upcoming Facing Our Immortality Retreat In June

Sr. Anne Marie Walsh, S.O.L.T. will be travelling from her convent in Iowa to lead our next retreat for women with or recovered from a cancer diagnosis.  I am feeling so blessed to have been able to work with Mother Cabrini Shrine to facilitate this very special event.

Women who have attended our event in the past experienced profound renewal of their faith and a deeper understanding of their purpose.  It's a chance to heal wounds and spend time in community with other women living this situation.

Please register by May 1, 2018 if possible!  Sr. Anne Marie is not charging a stipend but if you can find it in your heart to make a donation towards travel expenses, she would greatly appreciate it.

God Bless you,
Denise Archuleta
https://facingourimmortality.org/
facingourimmortality@gmail.com 

Healing Horses Workshop For Colorado Cancer Patients and Survivors

Please share with anyone in the Denver/Colorado Springs Area.

Promise Horse Ranch is excited to start a new program for cancer patients and survivors which integrates the healing properties of therapeutic riding.

The facility has an indoor arena and is located in the beautiful town of Franktown, CO.

https://www.facebook.com/promiseranchtherapeuticriding/

Please share!

GOP Tax Bill Will Dramatically Hurt Cancer Patients

This is copied from the Cancer Support Community Website.  Urgent situation!

Dear Denise,

Right now, members of the United States Senate are debating over a tax reform bill which will raise the federal deficit by $1.5 trillion over 10 years. It will benefit the wealthiest Americans at the expense of patients in need, and it will be voted on TONIGHT. We need to tell Congress that this bill doesn't work for cancer patients and their families. 

Specifically, we are concerned about the following provisions:

·If enacted, the bill could trigger "sequestration"-which happens when new spending is not offset by cuts to spending elsewhere. Sequestration causes automatic spending cuts which includes a $25 billion cut to Medicare.  Half of doctors would lose money administering drugs under these cuts, as Medicare would not be able to reimburse them adequately, and doctors who administer drugs more often, such as oncologists, would be hit the hardest.

·The Senate version of the legislation currently includes a repeal of the individual mandate that was imposed by the Affordable Care Act (ACA or Obamacare). The individual mandate is critical to ensure a balanced marketplace in which healthy people with low health care costs purchase insurance coverage alongside people living with illness who have higher health care costs. A repeal of the individual mandate will create chaos for our health care system as this delicate balance will no longer exist. The Congressional Budget Office predicts that 13 million Americans would lose health insurance over the next 10 years as a result.

·The tax legislation as drafted by the House of Representatives wouldeliminate the medical expense deduction. Currently, patients who spend more than 10 percent of their household income on medical expenses can deduct expenses above that amount from their taxes. Cancer patients can incur significant expenses, making this change highly problematic to millions of families nationwide. 

Overall, this bill will leave our nation in debt and it is critical that the final bill does not contain either a repeal of the individual mandate nor a repeal of the medical device tax deduction. These components will harm patients in need. Reach out to your Senators NOW and urge them to oppose the tax bill while it includes these provisions. 

 Call Now! 

Sincerely,

Elizabeth Franklin
Executive Director, Cancer Policy Institute
​Cancer Support Community

Go Fund Me Fundraiser For Our Retreats

Good Morning,

If you can find it in your heart, please contribute to our campaign.

The upcoming "Facing Our Immortality" retreat for women with cancer provides essential information and spiritual exercises to console and empower women to cope with their suffering and grow closer to our loving God, Jesus Christ.

It is being held in Corpus Christi, Texas, at Our Lady of Corpus Christi Retreat Center.  Some women may need help with expenses and we do need assistance with travel.

We have openings too, so please contact me if you are interested in attending!

Anything will help. God Bless you!!!!

https://www.gofundme.com/facingourimmortality

Peace and Blessings,

Denise Archuleta

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!

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 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. Update May 2023. Zejula was a terrible medication, I could not tolerate the myelosuppression and nausea.  


Peace and Blessings

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

Rest In Peace friend!

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

Thank you to the Bill sponsors:

Senator

Jack Tate

Senator

Daniel Kagan

Representative

Edie Hooton

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

Kagan and Tate, Hooton,

SENATE SPONSORSHIP HOUSE SPONSORSHIP

Senate Committees

House Committees

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.

-2- 031 

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,
Servivorgirl

GOP Health Care Proposal Does Not Support Life

Text from report completed by "The Congressional Budget Office"

"Later, following additional changes to subsidies for insurance purchased in the nongroup market and to the Medicaid program, the increase in the number of uninsured people relative to the number under current law would rise to 21 million in 2020 and then to 24 million in 2026. The reductions in insurance coverage between 2018 and 2026 would stem in large part from changes in Medicaid enrollment—because some states would discontinue their expansion of eligibility, some states that would have expanded eligibility in the future would choose not to do so, and per-enrollee spending in the program would be capped. In 2026, an estimated 52 million people would be uninsured, compared with 28 million who would lack insurance that year under current law."

In case you haven't heard, the GOP plan to replace the Affordable Care Act is a disaster.  I don't think the citizens of this country voted for a government that would reduce the number of people covered for health insurance.  We need everyone covered under an affordable, quality plan.  I personally support a Single Payer System.

Please contact your local US Representatives and let them know your opinion on this very important issue.

As a Whole-Life Democrat I view their changes to be anti-life and pro-corporation/pro-CEO. Republicans claim to be Pro-Life, but in this instance they fail massively. For example, within the provisions, CEOs of pharmaceutical companies will get to write off their incomes thusly placing themselves on corporate welfare.  Tax breaks benefitting other companies in the health care industry do not directly benefit patients but rather go back to the companies relying on their "good will" to pass along the savings.  

I don't know about you but when was the last time a CEO passed the company savings onto their end-users.  This profit driven healthcare system has to go, in my opinion. 

It would be wiser to simply improve the ACA to lower the premiums and remove some of the barriers that prevent health providers from participating in the ACA.  My dream of a single payer system may never come true but I can live with simply renovating the existing Obamacare plan to make it better for patients, providers and insurance companies.  


Here is a link to the CBO report.  https://www.cbo.gov/publication/52486

Here is are links to contact your US Representatives and voice your opinion:

https://www.senate.gov/general/contact_information/senators_cfm.cfm

http://www.house.gov/representatives/


PS:  On the mend from my prophylactic bilateral mastectomy.  I can't believe how much pain I am still have though..ha.  I want to share a thorough post on the results of my pathology as well as my view on being pro-active when BRCA mutations are concerned.  I think I dodged a bullet. God was nudging me and I am so glad that I listened to Him.

Peace and Blessings,
Denise Archuleta

Upcoming Surgery and Interesting INFO on BRCA Migrations To Southern Colorado

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

My Choice HRD

"Jewish Ancestry In the San Luis Valley"

"Lethal Gene That Emerged In Ancient Palestine"

"The Next Exocus? New Mexico's Crypto-Jews Seek Liberation"

Facingourrisk.org

Peace and an Abundance of Blessings

Cancer Moonshot Webinar Jan 25th Please Register

Cancer Moonshot Webinar Link

Webinar Info: 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! Denise Archuleta