Another trip to the ER

Well, the chemo is winning in this battle. Unfortunately, it isn’t doing anything to kill the cancer. Since Friday afternoon, I had a low grade fever which I read was one of the side effects of the chemo pill.  Then, Saturday fever was higher and my mouth sores were out of control. I tried all my rinses, mouth washes, secret remedies-none worked. I had been communicating with my doc who was in NYC. On Sunday, I called my nurse to see if she could recommend anything. When I said fever, she said call the doc asap. I called the on call line and got my doc. I had not been able to eat solid foods since Friday, but kept drinking and drinking. My tongue was so swollen with sores that I could barely talk.  I still cannot talk. After his call to Hoag Irvine ED, I was off to see if I had blood infection or whatever. All I wanted was my ability to swallow to come back and my tongue’s swelling to reduce. At the ER, doc told me that I had sores all lining the back of my throat.  Overall, I have now become one of those people that the side effects are taking over my body parts. I am too young to have this happen.

I always have hope, but my body is not strong now to fight. I cannot have this and I am demanding a new option for chemo which allows me to live and possibly kill my cancer. It is now the moment of truth. My cancer is spreading, my side effects are too much, I need honesty and a better plan for my quality of life. We are going to UCLA today and I hope to get some answers. It is difficult when my eyes are cloudy from pain and if I take the damn pain pills, my stomach will be more messed up. I cannot have my son think I am too sick and worry so much that he is not sleeping. I need my days to be as normal as possible and this chemo is not the answer. The reality is that I am out of known options that should work, but there has to be a brain somewhere on my team to think outside the box and understand the behavior of my crazy cancer cells. I am confident in my team, but now I am at the top of their list. If not, I will put myself up there. Even though I have no voice, I am screaming on the inside that this is unacceptable. I have lists of ideas luckily from my Rock Star husband who never gives up the search to find what others are doing all over the world!  Of course, this always makes me look like I am the fake doctor when he is in fact the brains behind the ideas.

My days need to be about quality instead of my constant cancer crisis. I need my son to enjoy his days with me instead of seeing me being unable to get out of bed.  We all keep focusing on our cruise and photos showing that I did it! One day at a time. I hope this pain goes away and hope there will be more answers today.


3 Responses to “Another trip to the ER”

  1. margie Says:

    I’m thinking of you through this, and love you very much!

  2. Diane Says:

    I hope you get the answers you deserve and that this pain subsides soon. I continue to pray morning and night and usually several times during the day for you. Love you Joanie..

  3. Ellen Says:

    Thinking of you, Alex & Jim and sending boatloads of prayers and positive thoughts your way, every day. Love you kiddo!

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