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