Not Heard Again Counts Too Low For Gemzar Today

​I literally have no voice.  The pharmacist had agreed to lower my Gemzar, but they actually didn’t. Somehow I am supposed to be calculating doses “per meter squared” which is why somehow it is my wrror?!!! No! I clearly stated I wanted less than what the oncologist was intending … 25% of standard dose was my original request.  

She talked me into “650”.  I was given “750”.   

My intention was, because I needed a platelet transfusion in the past, to start LOW and work my way up. Sounds reasonable to me. 

I had my Gemzar last Tuesday, I was sick over the weekend but fended off ongoing fevers with Tylenol.  I literally cannot have the “plan” to be ER visits every week. I was avoiding the ER for many reasons but would have gone in if the Tylenol didn’t help.  It is Extremely difficult to isolate the differences between sickness from neutropenia versus side effects of Gemzar.  

My oncologist was patient and counselled me in a more specific way so that I make the righr choices but I literally am not going to agree to live in the ER.  We can do better and I thought that my request to lower my Gemzar even further was a safe alternative.  Appearently my opinion and voice are muted. I am extremely depressed.  

I think people in the oncology field assume patients expect ER visits. They don’t want to think about how to better plan avoiding ER visits, especially for patients like me. I am SINGLE!  I HAVE TO WORK! It is NOT MY FAULT that I have had such crappy medical care!

I have a few good friends but literally no family who can be with me during this time for regular ER visits. 

Why is my voice not heard? 

My burden for just having a place to live is overwhelming me. My rent was raised by $111.00 per month. If I have no apartment I have nowhere to live. Can you imagine me couch surfing or living in my car or transitional housing during chemo?

Does the medical community want me to die?  I love my NEW oncologist.  I really do.  I love the care team, but why??????? How many more little mistakes though? My bone marrow order said I have lung cancer.  I was restaged to grade IVB without Any conversation.  I hate the medical system.  I guarantee you if I were married or had money this would not be happening.  

I don’t want to do hospice in a nursing home, when it comes to that.  In order to reveive HOME hospice I need a HOME.  Can you imagine me finding a “roommate” at this point?  

No Gemzar today, onviously, because all my coumts are low. I have antibiotics now if fever returns.  My previous gynonc should be paying my rent.  He’s the one that let my cancer spread for a year.  My CA125 steadily rose every month for a year and there was a scan showing tumor growth. Then he punished me for complaining about that. I am going to publish my records.  An attorney may not value my life, but at this point I have no choice.  Letting recurrences go untreated while receiving REGULAR gynonc appointments is completely unacceptable.  I need to not have to work right now.

Why aren’t doctors asked to atone for their sins.

I am starting to think that there is literally a demon attacking me.  Nobody listens to me.

I wanted a lower dose of Gemzar last week, was told it was lower, but it wasn’t.  My request was clear, whether I calculated based on body weight or not.I am not a pharmacist, how would I know the difference?  

Very depressed, not feeling like Servivorgirl. 

Over The Years With My Baby Girl

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Trying Gemzar

​Hello friends,

Peace. It’s been a nerve-wracking two weeks. My oncologist will allow me to try Gemzar at a reduced dose. I’ll be receiving bevacizumab during some of the treatment cycles. I pray I get through just one and see a big drop in my CA125.

I’m disappointed that my voice regarding PARP inhibitors was ignored.  My bone marrow is very weak, but praise God there is no sign of MDS or chemo-induced leukemia. If they would have listened and tried Gemzar last February I would have had a stronger bone marrow. If they wouldn’t have MISSED my recurrence we could have attacked my recurrence in 2021. Getting unstuck from the traumas has been hard, but progress is being made.....just in small doses. I need to keep my eyes on God (this last sentence added after confession Sunday before Mass.)

I had a melt-down yesterday because I’m already overwhelmed with too many appointments, a surprise appointment yesterday and realizing I can’t work and do these treatments.  I don’t know how this will work.

I’m receiving EMDR treatments, just getting started. Yesterday I was receiving EMDR while processing the trauma of my mom’s death in 2013.  There was not only trauma from her sudden loss but of course family stuff. It’s common, I think, for families to have differences when a central figure dies. All these things together are overwhelming. I wish healthcare providers better understood PTSD. The entire healthcare system is in a state of trauma.  It’s very sad.  

There are rays of sunshine that peak through the clouds but it’s not looking good right now.

The elephant in the room is my life and I’m trying to sustain myself as I attempt Gemzar.  The only other time I received Gemzar I ended up very sick in the hospital, and required a platelet transfusion.

I will be so happy if it works. But if I end up in the hospital without a significant drop in my CA125 we may need to stop. I don’t know.

I start Gemzar next week.  

Peace,

Denise

Restaged

I saw it in writing, I’m officially downgraded to stage IVB. Sigh. I had a bone marrow biopsy last week and will know more about the results next week. I have hopes to receive some treatments, such as a micro-dose of Gemzar.  My bone marrow is really weak. I trust God and my oncologist, 🙏🏻. 

It is a relief that we are in Easter season.  I must remain focused on Him as much as possible.  I have things I want to do still. 

I feel like the little girl who ran away from home for an afternoon, I just don’t want to be here, I want to be in nature. I miss my loved ones. It’s in God’s hands but I still pray.  

Dear Lord please use my suffering for your good works and divine will. I am sharing a copy of an intercessory prayer to St. Peregrine. Please pray this for anyone with cancer or a serious illness. 

O great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.

For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you. 

(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.

Amen.

Happy Easter

​He is Risen!  

Happy Easter

How Great Thou Art

Lynparza Too Toxic… Sigh

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Darny warny woo.  Lynparza too toxic, on hold again.  I see my new oncologist next week. I’m praying we can try to zap my ovarian cancer back with a reduced dose of gemzar. I had gemzar just one time a few years ago but ended up in hospital needing a platelet transfusion.  

Bad memories arise.  Missing a year of treatment because of bad medical surveilance drags on me.  Please pray that I stay focused on my salvation.  I cannot turn back the clock. God’s will is always in charge.  

If it is His will that there are no further options I want to spend some time in an RV seeing the sights.  I want to focus on God, prayer and those whom I love. I desire to serve, help my dad and those I can.  

I dislike pain though, a lot. 😣  Ok, well God is good always. This is another one I love, my friend’s sweetie… Zelda! 

Love, Denise

Lynparza On Hold Again, Sigh

​Hello friends.  My lynparza is on hold again, as of March 7th, because of a low ANC (.3).  Not doing any gsf as of now and will get labs drawn next Tuesday.  Pain still there, my little cross.

I went to confession last night and felt great Joy.  It’s lent, my favorite liturgical season. Today, in contrast, I experienced a few struggles with my environment and work.  Sometimes I just need to be away from people, not a good reflection of my spiritual state, but I have confidence that much of my struggle rests in neurological triggers not yet subdued. 

Whether it’s a noxious smell, rushing or fears of job loss, there is a need for me to complete the upcoming EMDR treatments.  I really want to be alone when I have anxiety (others would pry like me to do that as well… ha). I am praying the EMDR treatments will improve my quality of life.  I have so much to be gateful for and need to remember our struggles can bring grace.

The current inability to stabilize my cancer brings back bad memories of when the radiologist missed the increased cancer activity on my CT scan (Jan 2021).  There is still some “what if” questioning that appears out of nowhere. The only way I can have peace with those medical mishaps is through Christ, but to achieve THAT I need quiet time. I long for a silent retreat. 

Lots of ups and downs.  Thank you for listening to my rambles.  It helps to write it out.  We can’t control what is tossed in our direction.  We can make good choices but sometimes we’re simply overwhelmed.  We react instead of choose.

God is an all loving God who forgives in abundance.  People…. not so much.  Ha.  The lenten lesson that resonates with me this week is “only see Jesus”.  It was hard to do that today. Tomorrow is new. God Bless you.

Thanks, love Denise ❤️

Lynparza Ups And Downs

​Good morning. Feeling unsure but placing all of this in God’s hands. We are in Lent and my inner joy is growing! I’ve been coping with ovarian cancer for over a decade and am very blessed to have been granted this time. I am needed right now by someone and am grateful to God that I can be helpful. Financial stress is huge right now but it’s not eliminating my joy. I still have an apartment, so I’m happy. 

I had to take a break from Lynparza due to neutropenia and anemia. My CA125 creeped up a little and I have more pain. I’m now on a modified dosing schedule and pray I can maintain myself with that. I love my new oncologist.

My prior adverse reaction to a bone marrow stimulant has made me very leary of it’s use but appearantly you can have doses of it when prescribed oral treatments, you just need to hold oral meds on the day of the injection. So intervention with gsf is reserved for emergency only as it caused my RA to flare badly, I don’t know why. Sigh. 

Missing my Marilyn so much! Home feels empty without her.  Thank you for listening.  

Love,

Denise

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Missing My Marilyn

​I cry when I come home, missing my Marilyn.  Thank you Lord for the precious moments offered from you to me and my kitty. Let us also pray for the soul of Tyre Nichols and for his grieving family. Our pets have childlike hearts, if only our hearts stayed sweet. Love and God Bless you.

RIP My Marilyn Girl

​My only reason for wanting to stay on earth has passed away.  My cat precious Marilyn, sweet Marilyn Monrovia, was laid to rest on December 26, 2022. Please say prayers for her sweet feline soul.  She had kidney disease and was ready to go.  💔💔💔  She is no longer suffering. 

Marilyn, who will forever be part of my eternity, had been with me since 2012, after adopting her at age 5.  We were meant to be together.  I loved her deeply, she listened to me and comforted me throughout my cancer battles and personal struggles. Jesus sent us to each other. I adored her, loved caring for her, holding her, playing with her and simply admiring one of God’s most loving and beautiful creatures.  She never abandoned me.  

I hear the silence, it’s unbearable. Her purrs are gone.  Her kisses are gone.  Her heartbeat is gone. The warmth of her little body napping on my lap is gone. The little games she liked to play at night when it was time to sleep are no more. I’ll never see her waiting on the window sill for me to come home. When I open the door there is no sweet wonder at my feet. No more toys and chasing games in the apartment. No more loving watching her watch the birdies. No more playing with her on the balcony. No more seeing her happy when she ate her favorite treats. No more watching her watch big cats on tv. I feel empty inside. There is no life in my apartment now.

What IS forever are the precious memories in my heart and treasured photos and videos of her, as one of God’s unique creations. His precious Marilyn was given to me and I was honored to love her all these years. I will always love you Miss Marilyn ❤️💔❤️💔❤️💔❤️💔 Say hi to God for me. 

Merry Christmas and Happy New Year

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Our Lady Of Guadalupe, Pray For Us

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Happy Thanksgiving

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The Dark Day Is Light Again

​Praises to Jesus for my priest.  Reminded this evening that life is not resting here but in The Kingdom of Heaven. Our Holy Saints are closest to Him and by my remaining in prayer for their intercession, the pains of this world will dissolve.

Life here is fleeting, for my life and your life is intended to exist in Heaven, eternally. It will only be through a more focused life of prayer that I can remain in this state of peace. That is my desire. 

All Glory and Honor to the Father, The Son and the Holy Spirit.  

Amen