“Hope can be a powerful force. Maybe there’s no actual magic in it, but when you know what you hope for most and hold it like a light within you, you can make things happen, almost like magic.” — Laini Taylor

My face rash is not too bad now. I never had bad acne, so I am now thinking of all those kids back in high school who must have suffered so much and I was oblivious. My hands still have the rash and some things are more difficult to do. Unfortunately, my feet are still an issue and being unable to walk has really been frustrating. I have tried every remedy and nothing seems to be working. I called the drug company again and they said that my body may adjust in a months time. I can still hope. My visit to UCLA was shorter than normal, but my mind played tricks on me and I was nauseous even though I didn’t get any IV chemo. My doc is suggesting that I stay on this reduced dose and see another doc at Cedars for a back up trial plan. Unfortunately, my tumor marker went up a tiny bit, so we have to wait and see. This creates all sorts of uncertainty and frustration. If I can take one more pill, could this work better? The drug company has no info since this is an off label use. All I can do is to be positive and hope that it will work AND stop causing the foot pain. Even though we are trying so hard to maintain and upbeat attitude, the visual of me shuffling around the house and wincing in pain with every step has caused Alex to have his bad dreams. He has come to our bedroom in tears and just wants to be told that everything will be okay. I can only tell him the truth that I will do everything I can to be here for him. I am so thankful to have such a wonderful support system, but I know for all who surround me with love that it is frustrating to not be able to do anything. I think a cancer diagnosis is not about the doing, but about the loving. Knowing that I am surrounded by people who care, pray, and think about me (and my family), I feel comforted. Yes, I do secretly wish that someone had a magic answer for this foot pain, but I will figure it out as I go along as I usually do. I managed to walk through the Parthenon in the heat of summer with my feet issues, so I will figure something out for a trip to the grocery or a walk on the beach. I honestly cannot believe that it has been 3 years of this craziness. It is all a bit blurry. So, I will continue to take things day by day. I will be on a “countdown” since this drug is known to work in 4 weeks. Only 2 more to go and I am hopeful I will have answers. Next week, back to the blood test again since this drug has now impacted all my blood counts for fun. Nothing like the other chemo, but something I need to monitor. Looks like a weekend full of sunshine. I know I will find mine and hope you find yours.

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5 Responses to ““Hope can be a powerful force. Maybe there’s no actual magic in it, but when you know what you hope for most and hold it like a light within you, you can make things happen, almost like magic.” — Laini Taylor”

  1. terry fierle Says:

    To so many of us u r our sunshine

  2. Lisa Says:

    Hi Joanie,

    I’m sending positive thoughts & love all the time to you!

    Hugs!!!

    Lisa

  3. Ruthie Says:

    Joanie I think of you and your “rock star” husband and Alex often. Yes, you are surrounded by friends and family that share their love and positive thoughts with you and “your boys.” The power of positive thinking can only help, and besides it feels good too 🙂 love and hugs to you! xoxoxo Ruthie

  4. Linda Kirsch Says:

    The sunshine is there for you. We’re sending prayers and love to you too.

  5. Tonya Cohen Says:

    My girls and I are sending you only upbeat positive prayers and thoughts. YOu have the courage of a lioness! xoxoxo..Ton

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