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Wednesday, December 19, 2012

Dexa Is Bad... mmmmkay

I'm obviously having a hard time. I admit. I have had the MOST AMAZING journey. I'm so thankful and grateful. Unfortunately, I did have a bump and a pause for two weeks but that happens with almost every patient in chemo some point along the way. I fell in between the cracks though. I've had 5 different chemo nurses instead of one or even two... And now in my last treatment, I was even given  steroids when I understood I wouldn't be getting them. When I reacted, the response felt like such a slap. I'm especially upset because it's completely uncharacteristic of the usual care I've seen here. Most every nurse I've encountered has shown utmost patience, care, and respect. In my latest, I just feel like a number. Not an individual. I voiced concern about treatment as an individual.

After realizing I'd just received a bag of Dexa-methasone before a Taxol treatment AFTER being told previously that I don't need cocktail drugs before receiving Taxol, I asked the nurse why I needed it. Her response was, "You got Dexa because you demanded it."

My response: "I don't demand things. I'm a patient here who takes interest in my treatment. I ask questions, I want to make sure I understand what's happening in my treatment."

Nurse's response: "It says in your medical file that you demanded Dexa even though you don't need it. You know Dexa is bad for you. There are serious side effects."

Me: "Listen, I've had some very bad issues with nausea after treatment and I've expressed fear about dealing with it. You connected the Dexa but you didn't ask me about my reaction to the last treatment. How are we supposed to know if I need it or not?  I had no idea it said that in my chart and it was written by another nurse, why not just ask me how I feel before giving it to me especially if you think it's bad for me?"

Nurse: "You demanded it. It's in your file. Do you know there's a nurses strike going on for the past two weeks? We're understaffed as it is and not only do we not have enough nurses to deal with our  regular stress, today we have double the usual patients AND the ER stole one of our nurses to help down there. I shouldn't even be working today, I should be on strike!"

Me: "Well that explains why I'm getting Dexa. I'm sorry about the strike, and I support the nurses 100%. I'm getting chemotherapy here and I feel that I've been bounced from nurse to nurse and not really explained this issue with the Dexa. It really bothers me that I'm getting a bag of steroids if I don't need them just because a nurse wrote that in my file... I don't understand it."

Nurse:  We're overworked... we don't have time... blah blah blah


  1. Erika, I am so sorry you experienced insensitivity in your treatment. I had thyroid cancer and I know that when I experienced insensitivity from medical staff it was very hard to get over it. Even though overall I received good care...
    You inspired me throughout my treatment and you gave me so much strength.
    I know that when you are ready you will move past this and find in yourself even more strength then you imagined.
    I pray for you everyday.

  2. It is simply remarkable when medical staff argue against us. We ourselves need help, or we are helping someone who needs medical care and you are FIGHTING me? ARGUING with me? Hello?
    It's so Kafka-esque. Wishing you lots of loving care to soothe the adrenalyn rush of shock.

  3. I would have asked for her supervisor. No one should be treated like that.

  4. I had a nurse mess up my port connection and drip blood on my favorite comfy yoga pants (that I would wear for treatment). I said "Ouch, you're dripping blood. Is this in right? It doesn't feel right." Way too casually and without even bothering to look me in the eye, she said "it's no big deal". Um, EXCUSE ME?? It's a PORT! To my heart! It is the biggest deal! Not to mention, droplets of blood stains on my favorite comfy pants. I insisted she take another look, and roughly she reconnected it. It was as if I was annoying her. I couldn't believe it.

    I am happy to see that we speak up for ourselves! WE MUST BE OUR OWN ADVOCATES. As much care and wonderful treatment we do receive, there is always one or of luck and health to you!

  5. Hi Erika

    Finally I found your blog.I read what you wrote on Aish Kodesh and it made a deep impression on me . made me notice each breath so to speak made me stop....I am praying for you each day. I appreciate it that i can get in here and hear how you are . We miss you at Le Leche. I met with Guinat today and she was correcting me etc. and said Erika does it so well.We miss you .I don't have anything brilliant to say exept that I am thinking of you, I read your blog and my heart is full. I send you lots of love may Hashem give you strength and a speedy refua shlayma
    love Lauren

  6. I recently had surgery at Hadassah Har Hatzofim and I think that too many of the nurses in the dept. I was in lacked the most basic sense that their job involves making sure the patient is comfortable and feels OK. Your nurse sounds like a witch, but I realize now that that is not at all unusual.

    The message I got loud and clear from the doctors and some of the nurses in the dept. I was in was this: You are a slab of meat, not a human being. We don't care what you want. Just get out of the way and let us do what we want to, even if it's not what you want.

    I don't support the nurses' strike or any doctors' strike, because no matter how justified their demands may be, they are endangering their patients. I saw claims during some doctors' strike or other that no one had died as a result of the strike, but frankly, there is absolutely no way in the world that they can know that.