I gave a good confession, received Anointing of the sick and holy communion. I am in disbelief and my emotions are all over the place. My heart is broken, once again. My new treatment sanctuary is no longer safe. There was no reason to receive a high dose of Gemzar, yet it happened. None of it makes any sense to me. Why?
My last resort, Gemzar, had worked in the past but with serious consequences. I was hospitalized because of toxicity in 2020. It is ok to give Gemzar at a reduced dose when there is a history of toxicity, that is what I asked for and it was even noted in the plan to do Gemzar at a reduced dose. It is written in the medication protocols as to how to reduce the dose when there is a history of toxicity. Nobody listened. I am invisible.
I wrote it in messages and it was part of multiple discussions. I needed surgery on May 5, 2023 on my left knee to remove septic tissue. I have been on IV antibiotics since May 3, 2023 and will continue daily IV antibiotics for several weeks. My chemotherapy is on hold until cleared by infectious disease doctor. I literally do not understand why my doctors ignore my requests. Who would have been hurt if I were to have received the 25% or 50% of Gemzar? Not one person other than me if it didn't do any good.
My experience with Gemzar in September of 2020 showed a remarkable drop in CA125, which is why I had been asking for Gemzar since March of 2022 (after a year of untreated cancer growth). The only problem was the dosing and managing my severe adverse reactions to GSFs (which stimulate the bone marrow to produce WBCs). I ended up receiving a half dose of Granix on May 5, 2023 prior to my knee surgery. ON Saturday my spine was on fire and I was literally howling in pain. I needed morphine. We learned maximum GSF should be 25%, per me, the patient. I want to do more Gemzar at 25-50% because there was a significant drop in CA125 from my infusion on Aril 25, 2023. Maybe if the oncologists actually had cancer they would understood what it means to listen when the patient says no. (this blog post is updated because I felt so betrayed by my doctor that I had to vent. I still feel betrayed but felt it was important to scale down the emotion. How can I trust someone who lies to me?) This blog is my voice, my life and my experiences. When I write about my treatment it is the treatment facts and my experience/feelings related to that. I have a right to tell my story. I am still very hazy from the hospitalization. I don't want to drag anyone down I just want to live.
05/18/23 I am severely depressed because I have to wait another 6 weeks before I can go in a pool, lake or reservoir to swim. I'm allowed to use a SUP or kayak, but only if I can keep my left knee dry/sealed. Water is my heaven. I now have stage IV cancer (which was never even discussed with me, I read it in a report) and my oncologist is ruining even the last moments of my life. Does this happen to other cancer patients or am I the lucky one. I really am lost. I will hope to have a new oncologist but will have to move. I have no money to do that. I don't understand.
