Toddler Size Taxol All Around

​Hello friends,

Such a sleepy night but I wanted to tell you I love you.  I am back on Taxol, but the doses are smaller and administered weekly.  My infusion nurse calls them toddler doses.  I will also remain on Avastin. 

The reason for toddler taxol is because I'm allergic to neulasta.  The lower dosage on a frequent basis is less likely to tank my neutrophils. Well, it's not in my hands but in the way I have been grilling people, you'd think it was. I'm a mess, I was blindsided by the bladder tumor. 

A radiology report from a year ago didn't mention an important abnormality and now I probably have cancer on or in my bladder.  My "ptsd" is in full swing, feeling like I'm back in 2008 all over again. Thanking Jesus for my gynonc. 

Well I am super sleepy.  I want to start sharing my journey again.  It feels less hopeful only because my body is beaten up from years of medication.  My heart is not beaten up and I still have a few vacations to take, if I can get someone to take me.   Ha.

Love and more to come.  God Bless you. 🌸❤️🌸🙏🏻🌸❤️🙏🏻

A Brand New Day

Today was a great day!  I had the pleasure of speaking with a health professional to discuss my anxiety.  I learned another coping skill and feel more empowered to cut off an episode at the pass.  

I had not been able to sleep several nights this past week, haunted by things at the hospital. I recognize that certain things are triggers that can draw me down into a rabbit hole and in spite of my love for Jesus and prayer, I am vulnerable to succumbing to those triggers.

I felt so welcome today, everyone was just so nice. I thanked the Lord over and over for His grace today. I thanked the Lord for all the people who helped me today and that someone listened. God Bless them.

Psychological care is a vital component of our overall healthcare plan as people with cancer, cancer survivors and for caregivers. I know I will always need psychological support. 

If you feel like you need mental health care, please talk with your doctor or nurse. God Bless you.

12 Years Praise To God

I love the Lord and when I went to confession a few weeks ago I offered in full, to Jesus, ALL of my sorrow and anxiety and pain to Jesus for the repose of the soul of my dear sweet brother. May he REST IN PEACE. 💔 I know that God wants for me to focus on HIM because if I focus on the pain of the world, the pain of my life, my soul will suffer in the end. I pray for his sweet kids. I also pray for my sister, and her kids, as she lost her husband last December.💔

I strive to NOT WASTE my suffering but I don't always remember to do so.

I think this post reflects on the dangers of keeping grudges. Don't do this to yourself and please do not hold them against others, especially ones who really do love you. Learn to forgive, please.

A priest recently reminded me that doing the work of God can make people very angry, but not to let that stop me. I suffer from family estrangement because I refused to follow hateful orders. I was told not to take calls from my uncle (US Veteran) who suffers from bipolar and PTSD. He was off his meds and causing a lot of trouble. I was not given an explanation just told not to take his calls.  In my heart that was wrong, and I took his calls. He was suicidal, God saved his life (with my help) and I lost my aunts' love. They hold a grudge against me still for helping him. This is the only thing I can publicly discuss where I think it will help you. I can't tell you how emotionally messed up I feel sometimes because of this but I know God did not want me to ostracize him.  It wrecks me for a few hours, then I remember God loves each person equally, and we are supposed to love each other.  I did the right thing.

My loving sister stuck with me all the way during front line treatment, through all of my suffering and I will forever be GRATEFUL to her for that.  My mom put up with so much of my rage  ( I lived with her) because of the medical errors that happened prior to my diagnosis.  I never got the psychological help I needed to deal with the anger. I am so sorry mom (she is in heaven and no longer has to deal with any suffering).  

I no longer hold a grudge against my doctors in California (pre-cancer) but what continues to happen is the emotional pain gets triggered every now and then. My brother died of cancer and now I am flooded with the memories of all the rage I had back then. I am slowly coming around.

Remember, I was told many times I was too young to have ovarian cancer, while I WAS TELLING MY SYMPTOMS OVER AND OVER, I WAS IGNORED. Of course I had rage for several years.  That was why I named this blog "Nobody" has ovarian cancer.  I no longer have rage, hold no grudge, but the memories come back sometimes, like now. My mom suffered because of me, but I got no help. The massive steroids made me a wreck too, which did not help.  I was so messed up by the steroids that I was fearful to walk outside, the clouds were too dark and I was afraid of dogs. I was a hot mess during front line treatment.  It took two years of my own begging to get a psychologist!

The cancer community did not want to admit that this gross medical error occurred on the part of PCP and OBGYN community, so I never received the psychological support that I needed to manage the rage.  I hate myself for that.  Fast forward to today, I still have anxiety and depression, but it is well-managed. I am not perfect and still to this day most medical staff do not want patients with anxiety.  I feel it all the time. They are so cheery when a patient they like arrives. Look up anticipatory anxiety.

I have to re-think my purpose for living because God is all good, all loving, all merciful and all Truth.  He has me here.  I would have in a second given myself to save my brother or Pat.  I mean that, truly.  God what do you need of me and I pray for you to give me grace to fulfill your will. 

I pray for Thy grace to flow over those whom I love, who have let me go, but if your will is for me to be without them, I will have to accept that. I need you to help me live with that for I cannot bear it.

I am sorry that this post is not the cheery FB positive cheeky happy post you were expecting.  I wish I had some positive photo of me surrounded by a bunch of people wearing teal shirts that say "you go girl" but I don't. I do however still show that loving photo of my sister and I on my last day of front line chemo.  I love you Mandy.

Maybe other cancer survivors or other people with chronic or life threatening conditions who are also single will read this and simply understand.  I have no husband holding my hand when I go to the clinic. I feel vulnerable. Nobody's face lights up when they see me. I need to change so that they do. I will try.

If you are a person who is loved and surrounded by your whole family and lots of friends who adore you, be grateful.  Be grateful they don't hold grudges against you forever. You are abundantly Blessed.  

To the ones who care about me and love me, You mean everything to me. To the ones who have let me go, I love you too.

Be forgiving. 

God Bless you all.

The Command To Be Perfect

Hello friends,

As you may know, Sr. Anne Marie Walsh of SOLT and I host a free monthly spiritual exercise group/support group for people wounded by cancer.  This includes patients, spouses, loved ones, cancer survivors and for those who have lost a loved one due to cancer.  Our group also hosts retreats on a periodic basis to help those who would like to take special time away from day to day distractions and focus on their relationship with Jesus, in light of their situation related to cancer and health.

Tonight we are hosting a call with Sr. Anne Marie about "The Command To Be Perfect".  This will be a very interesting spiritual exercise because our society, especially in more advanced cultures, really alters what is meant by perfect and we are simply incapable of reaching "perfection".

I went on a retreat in Iowa at Domus Trinitatis about two weeks ago and must say it was truly challenging for me spiritually.  I was experiencing more of our Lord's suffering than joy but continue to reflect on that in total and strive to apply this to my current life as I focus on being closer to Him.

The link to tonight's session is on our website and can be found by clicking here. 

This past year has really been challenging physically. I won't bore you with all the details but let's just say I am really struggling physically.  If I didn't have a true Love for God, the Saints and our Blessed Mother who knows where I would be.  I always stay grateful that I am alive to tell about it.  I really do understand how fortunate I am. 

Thank you for listening and I hope you have some time to visit our website at https://facingourimmortality.org/.

Peace and Blessings,
Denise
aka Servivorgirl!

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.

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