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.